Welcome to the adult CF clinic. Your going to die.

I dont actually know anyone else with Cystic Fibrosis, I was always taught at clinic not to make friends with others because of cross-infection. My mam however knows a few parents of kids with CF.

One of them has recently semi-migrated to the Adult clinic I attend. I have a vague recollection of my first time in adult clinic, and a chat that went something along the lines of "do you know all the implications of having CF?". This covered things such as bone deterioration, diet, fertility and life expectancy. I agree that this talk is probably necessary to on one hand explain to you the harsh realities of life with CF, its the way it is done that is problematic. Being told that your probably going to die in not many years time isnt something to be said lightly, but it is, really, your just told. There is no forwarning and no backup afterwards, you just get on with it. Really, I think as is the case in many other CF clinics, there should be a permanently based psychologist there to help you through your life. I spent a good 8 years of my life being seriously fucked up by having CF and not being able to cope with it. I came out OK in the end but I do feel that if I had had the correct support from the start, things would have been very different. The idea that the only treatment someone with CF needs is to make sure they can breath and eat properly is very misguided and last century.

So she had this talk, without any support, and was absolutely devastated. And has no idea how to handle it. A bit shit really.

Payment by Results

My CF nurse from Sunderland was here earlier this week to flush out my Port-a-Cath. She was talking me through a recent conference she'd been to, updating me on the up's and down's of CF research and thinking. She also mentioned that the government was considering changing the way treatment for CF is funded, and that the CF Trust was offering support for this new way of payment. The new method is called Payment By Results, and is being trialled at certain CF 'regional centres'.

It was explained to me that payment by results means that funding for CF treatment in an area is sent to the main regional centre, instead of the current situation where each regional or sub-regional CF centre claims a budget from their local PCT.

What might this mean for the North East? I am led to understand that each region would have one large CF centre, in this case at the Newcastle RVI clinic. The Sunderland pediatric clinic would be abandoned along with all the specialist staff it encompasses. As I have talked about before, I currently straddle between both clinics, having my main check-ups at Newcastle and my day-to-day care such as starting injections and flushes by the home visit nurses from Sunderland. Newcastle do not believe in home visit nurses.

The current mantra from the government is choice within the NHS. Although we know that compared to the past the current choice is highly limited, and in reality is not choice at all, this current review, to me, does not seem to be heading in the direction that the government say they want. I cant choose to go to another regional centre and use home visit nurses.

I cant help but think that this is making things far too complicated. As a patient the money should follow me, not a specific clinic, GP surgery or hospital. If I get an order for injections to start from my specialist at the RVI in Newcastle, I should be able to travel to London if I wish, walk into a CF centre there and start them. Whoever provides the service for me gets paid, wherever in the country. That would be the 'National' part of NHS which never actually applies. So, if I get a flush from Sunderland, and a nebuliser from Newcastle, they both get seperate payments no matter who is my over-riding authority.

Frankly the thought of loosing my CF nurse scares me.

As it happened the latest CF Today magazine popped through the letterbox a couple of days ago, and featured this article:

The development of Payment by Results for Cystic Fibrosis presents us with an exciting opportunity to ensure that all providers of care for people with CF will receive an equal and appropriate level of funding, so that they can provide all that is necessary for an excellent standard of care, no matter where someone with CF lives in the country or which CF Centre they attend.

Payment by Results or PbR for short is a method of payment that links 'activity' to funding received, in other words money follows the patient through their hospital journey, paying for all aspects of treatment and care received along the way. This differs from current arrangements whereby most services are paid 'block' sums of money that do not reflect the level of care received and do not take info account the growing number of patients with CF, new treatments etc.

In 2007 the Department of Health circulated a consultation paper on the future of PbR for specialised services and introduced the concept of development sites with the trialling of new approaches to PbR for complex conditions such as Cystic Fibrosis. The Department of Health acknowledges that rather than making payments based on an individual 'episode' of care there may be an opportunity to develop an alternate method of payment.

The Cystic Fibrosis Trust responded to this consultation paper and proposed payment based on an annual 'banded' tariff, meaning that care is funded annually, based upon the severity of your condition and the level of input / treatment required to look after the patient as prescribed by their clinical team.

The Department of Health Designated Cystic Fibrosis as a development site for PbR in January 2008 and we have been working very closely with them ever since. In April 2008 we launched the PbR Development Project and following a meeting of clinical and finance representatives from Cystic Fibrosis centres around the UK, we nominated eight adult and seven paediatric pilot sites to work with us on a costing exercise to determine what the annual 'banded' payments will be.

Following completion of the costing exercise a report will be produced that will be presented to the Department of Health, with the aim of implementing PbR for Cystic Fibrosis in 2010/2011.

Our hope is that for the first time, funding for the care of patients with Cystic Fibrosis will be provided at an agreed, equal and appropriate level for all, resulting in the provision of an excellent standard of care for everyone.

It reads largely like NHS speak to me. I will be writing to the author to try and question some things and find out more information.

The future is now

I have a job now.

It certainly hasnt been an easy road to even finding out whether I am allowed to work, never mind getting a job itself. I was previously given a big piece of mis-information by a number of individuals and employment charities that as soon as you begin any kind of work, be it 15 hours per week permitted work (so a trial), a few hours, or full time, you would DEFINITELY loose your Disability Living Allowance benefit. After 2 weeks of phoning the job centre every day to try and make an appointment with my local disability advisor I found this was not true. Gaining employment is not considered a change of circumstances (much as those benefit fraud tv shows would have you believe otherwise). Between me not having a job, and the next day having a job, the impact of my Cystic Fibrosis on my life has not change, and it never will, so it should not pose a benefits problem. Wish someone had told me that in the first place...

I am now working under permitted work rules (under 16 hours per week, a maximum of £88.50 per week), so utter shite really. Incapacity benefit really has no place trying to control the lives of the chronically disabled in the same way it does for the temporary long term sick. I think that it generally works for its original purpose, which was for example, a builder who breaks his arm, and will, after a period of maybe long recovery, be able to pick up a career in the same industry. There is no need for major support, or for re-training in another job, the problem is most definitely temporary. For the long term disabled, this just is not the case and another, way way wya more flexible approach must be taken.

Permitted work is a very black and white thing. After a year working on your minimum wage, minimum hour job, you can no longer work. You have 2 options, you are either suddently well enough to work full time, and thus drop off benefits completely, or you are not well enough to work at all (even if 15 hours happens to be your limit), and have to stop working completely. This is so annoying because, i really want to work, I have moved myself into the dreaded area which used to be the 10% tax rate in order to work a few hours a week, and will no doubt loose quite a bit of money in savings interest because of this. I may have been better off not working at all once my fuel costs for getting to and from work (50 miles per day) have been taken off. I am unsure if I would be able to work more than I am now, I cant choose to gradually move my hours up, and slide the amount of benefit I get down, if I want to try, I have to risk everything. I know this is what the average person in the street does, but generally the only thing stopping the average person from getting a job is lack of skills, not a physical impairment which they have no control over, and thus my risk of losing everything is far higher.

I am actually quite happy with my job at present even though financially it isnt great. Im not sure what i'll do in the future though. Being unemployed is very depressing.

The future

Its been some time now since I graduated from University. I took some time out to recover from the stresses of it and re-analyse what exactly to try and do with my life from now on. Ive managed to keep myself reasonably busy and my mind active but I feel now is the time to move on.

Ive been on incapacity benefit for at least 5 years now, since I dropped out of University the second time. A few months before Christmas I decided to have a run down to the local job centre and see the Disability Employment Advisor. I sat and explained the situation, that I need 2 weeks of injected anti-biotics every 3 to 5 months, which knock me off my feet and will result in my being unable to work, that I have a higher chance of getting things like the flu than the average person and so am more likely to fall ill, making me a less employable person than a norm. He talked about courses they offered, which amounted to skill and confidence boosting ones, ones which werent too useful to me, I dont lack basic skills, and I dont currently lack confidence. Then he moved on to the financial benefits of me working, which to be frank werent actually that beneficial considering the jobs the job centre likes to push.

In reality money is not my major issue. The last time I spent a significant time out of education and on benefit I got into the benefit/depression trap. Its not nice but at the same time its hard to escape from. This time around I have no intention of letting myself and my relationships go. What I went to the job centre looking for was re-assurance than I would have some kind of support when my disability gets in the way of future employment, how to present my disability positively in interview, links to disability friendly companies etc. I didnt really get this.

My next port of call was a charity called the Shaw Trust. They offer services ranging from general advice to a job brokerage service. Where as I found the job centre offered a solely end game and skill based approach, the Shaw Trust, I feel, offered a more holistic approach, helping you along in an understanding way, not only presenting the facts about the benefits and work systems, but helping you understand how may overcome your personal problems to gradually ease into, or back into, work.

When I graduated from University I had a final chat with my tutor who suggested that it would be great if I could get some experience working in my field of expertise, either doing voluntary work, or part time work. I was under the impression from the regular correspondance from the Department of Work and Pensions that under no circumstances could I do this. This is wrong. I am actually allowed to do this. Unfortunately my tutor is out of the country at the moment so I cant pursue this course currently.

As it happens, I injured myself playing Golf just before Christmas. Yes, Golf! And was out of action for some time because of that, so nothing came of my previous plans on looking for work. Im back in action now though. The job centre has a new Disability Advisor. He was surprisingly much better than the previous one. More understanding, more positive and also working with instead of against the Shaw Trust. Ive also been back to the Shaw Trust and plan to try something called permitted work soon. This allows you to work for up to a year, less than 16 hours per week and £80something per week to see how you get on.

The situation isnt perfect. Everyone on incapacity is lumped into the same scroungers nametag, yet people's lives are rarely as simple as portraid in the media. People end up in this situation for many reasons. Id also say the help available is definitely not as good as it could be. Ill blog about that soon.

Dont be silly, hospitals dont give out medication

Im currently having injections.

Injections consist, essentially, of two different sets of requirements. Firstly, is the equipment required to administer them, touched on here. Secondly is the medication itself.

There are 3 different ways of medicating for injections. The method I have always used involves getting the medication in its base form, then mixing with other solutions and drawing into syringes. Although the process initially looks complicated, it takes around 10 minutes of preparation per set of injections, and I have 3 sets of injections per day.

On most occasions, unless I am particularly ill, I will decide on experience when I need some more injections to keep me as healthy as possible. This does not necessarily conside with me being diagnosed with a specific infection, you tend to learn to feel when one is coming on way before it can be medically picked up. With this in mind, when I am ready for injections I will phone up my nurse, let them know and explain what I am feeling, and if in agreement treatment starts ASAP, with my nurse (previously) bringing the relevant supply of equipment and medication.

Things have now changed, and as with all my medical equipment, Sunderland General Hospital is now refusing to supply any medication to specialist patients. My GP, at present, doesnt appear to be directly responsibly for the supply of my medication either. The situation currently is that my Cystic Fibrosis nurse, who is a prescribing nurse, writes out a prescription for all my medications, which I then have to take to a pharmacy of my choice. Unfortunately, because of the specialised nature of my medication, I have to give the pharmacy two weeks notice for them to be able to get them! I find this frankly stupid as the medication is obviously sitting around in some kind of NHS warehouse in the region, previously my CF nurse could obtain medication in less than 24 hours. My usual pharmacy is Lloyds Pharmacy. We decided that because of the sheer volume of medication I would need, it would be easiest to use there delivery service. I was told to make sure I was home on a specific day, although no guarantee on time. As it happened we had a delivery the day before, the specified day, and a week later with an assortment of drugs and no explanation.

So how does the old and new system compare for me, the patient? or even for the NHS. The old system was nothing but simple, for me at least. I phoned up, discussed injections, and if agreed my nurse would turn up a day or two later with all the equipment and medication I would require, would put the needle in, give me my initial tester dose of medication, check I was ok, and that was that. Now, after the phone call, I had to wait for the prescription to arrive in the post (paid for by NHS), then I had to drive to the pharmacy (polluting as I went), then I had to listen to the pharmacist complain about the quality of the prescription. As it turns out, they did not even supply some of the correct medication makeup which has complicated the creation process, frustrating. The pharmacy used normal taxi's to transport the drugs to me, costing them money, and no doubt increasing the amount they charge the NHS for their services, and more pointless pollution and waste.

Why?

In the end, the money is coming from the same place, whichever seemingly more complex 'pathway' it happens to be transferred through.

Flabby Arms

A family friend was, until recently, very over weight. And I mean very.

She hasnt particularly had an easy life, but has started to pull things together over the last couple of years and through doctors advice has changed her diet and enrolled in a gym. She lost alot of weight. Unfortunately, she has been left with large flaps of skin hanging down from her arms and other places which means she cannot get into the majority of clothes for her body size.

Apparently, the removal of this skin is available on the NHS, but only for people who reach a specific body mass index, or below. She has been using this point as a huge reason to loose more weight. She hasnt been able to reach it though, no matter how hard she has exercised. So, the NHS has now said she cannot have the operation.

This may seem fair enough, it could be too dangerous for someone over a certain weight to go under the knife and have the operation. It should be pointed out that, obviously, not everyone is built the same, and that the lady in question has quite a ... stocky? build, minus her over-weightness or not, some people are naturally slight, others arent. From what I have been told, BMI does not take this into account. This was confirmed in a recent conversation with her personal trainer at the gym, who after being told of her target BMI for the operation, explained that with a body of her type, she was NEVER going to make the target, even if she was in perfect health.

What a fuck up.

Good News

I picked up my results from Uni on the 3rd July.

And, I passed, woohoo! Got a 2:1, way better than I expected!

Thank you Northumbria University.

Here, take this

This, in some ways, relates to problems I had getting sharps boxes when Sunderland General hospital started refusing to give them to patients, insisting that they instead get them from a GP.

Some relevant posts:
Sharps boxes by me
At the sharp end by Dr Crippen

For the last 19 years, when I have needed injected anti-biotics, both anti biotic, and the apparatus to administer them was provided by my Cystic Fibrosis nurse, who obtained them from Sunderland General hospital. This also applied to materials used to flush out my port on a monthly basis.

For some reason, I assume purely financial, the hospital (or trust, I'm not sure how the hell its structured these days) is now refusing to supply any material related to injections or port flushes, they will now only supply the drugs. Everything else is to be supplied by my GP...kind of.

My CF nurse now has to contact the central supply department at some other GP surgery in Sunderland, who then send the equipment to my own GP surgery, who until now have sent the drugs to yet another GP surgery which was deemed more local for me. This GP surgery, although technically closer, has no patient parking (aside from officially disabled) at all, which meant I had to park 5 minutes walk away. Not a problem really, except that what I thought was going to be a bag of nebuliser supplies, turned out to be a box so large I had my arms at full stretch just to be able to pick it up. It was heavy too.

I appear to have gotten slightly ahead of myself here. When I returned from holiday a few weeks ago I had a couple of voicemail messages left on the phone, saying there was a box of equipment waiting for me to pick up at the local GP surgery. Normally, these boxes are nebuliser equipment, so I assumed that nebuliser equipment would be in the box. As stated above, I was wrong. The box actually contained:

100 bungs - these go on the end of the needle in a port when I have injections to facilitate needle-less injection through a syringe.
100 5ml syringes - I have zero need for 5ml syringes
100 Alaris 13mm SS Vial Access Device - I have no idea what these do
100 orange blood taking needles - no need for these either
12 0.9mm x 25mm port access needles - I use these
200 10ml syringes - use lots of these
100 green needles
100 blue needles
100 sani cloth saches
200 sani cloths in a tub

Some of these things I do use, others I have never seen in my life before. I gave my CF nurse a call as soon as I got home to see what this was all about. So, the 5ml syringes, alaris 13mm access devices and blood taking needles were all a mis-order, which the central ordering service had been made aware of, but ended up ignoring for some reason. The other stuff is technically stuff I use, but.

Take for example bungs. I use a maximum of 24 of these per year. The bungs expire in 3 years time. I am never going to use all these bungs before they expire. Waste. All the other items are harder to gauge, but there is a good chance I will not use all of them.

In the past, my CF nurse brought almost exactly what I would specifically need for each treatment, plus a couple of extra 'just in case spares'. These, I assume, would come from a box in the supply cupboard which multiple nurses use for a number of different patients. Much less chance for waste. I asked why, if I was now going to be forced to get equipment from the GP instead of the hospital, we could not just request exactly what we needed when injection time came around. Well, that's because now, it takes at least 2 weeks from my nurse telling the central supply centre I need equipment, and it actually turning up for me to pick up. Why does it take 2 weeks? Who knows.

It has gone from one days notice to 14, ugh! Also, why do I need to get huge boxes of everything? We are already absolutely crammed for space with varies drugs and medical equipment, we are running out of space to put the stuff in. Apparently, they are only allowed to give out whole boxes, and will not sort out individual requirements because, although this is coming from a GP, it is not a prescription service. Seriously, why should it really make any difference? In the long run, all of the money they are wasting giving me things I am never going to use will waste even more money.

I'm not sure where I am going to take this. I am not happy that yet another service has been corrupted and made worse for the sake of money saving. Next time I have my port flushed I will be having a more in depth discussion with my CF nurse about specifically who has decided to do this, which PCT, which trust etc, then I can take this further.

Choices

Dr Crippen had a post about the new NHS Choices a few days ago. I notice that you can post your own comments about particular hospitals and such.

It is titled "No bias, no censorship", and then goes on to say "We'll publish your comments...as long as they meet moderation rules".

Well, it is censored then isnt it?

In summary

My results should be appearing on the doorstep soon. To say I am nervous at present is somewhat of an understatement.

While I wait it has left me to mull over the ups and downs of the last 8 years, and the general ups of the last 2 years.

As Ive written about in the past, my previous experiences at Northumbria University, although partly of my own doing, but not really in my direct control, were not particularly positive. The resources available to deal with a student with all of life affecting disabilities was lacking, not that staff did not try, just experience and resources were not quite up to it.

When I returned, my head of year, and later on my dissertation tutor, although not particularly clued up on my disability specifically, had a much more positive attitude to 'getting me through' the year(s) and getting my honours degree. This, coupled with my own more positive attitude helped alot. It did not however, solve all problems. Set in stone university systems about how, when and why work extensions were given was always a bone of contention. The policy seems to set quite stringent maximum extension lengths, so whether you are continually ill for 1 week, or 6 months, your extension will not be set flexibly to accommodate your specific circumstances. My circumstances being very specific meant I often hit up against this wall. It seems to have turned out that the people who I have alot of contact with, such as lecturers of specific subjects, dissertation tutor, department admin staff who I have know for over 7 years, all understand the circumstances I have been studying under, and try to support me. From conversations with some of these people, help has often been blocked at inter-departmental meetings for me because the people who I had had no contact with had the power to veto, and not knowing me, did not necessarily grasp the circumstances, or were totally unsympathetic. I cannot blame the department or head of it for not knowing exactly how to deal with me initially. At the start, I was asked exactly how it would affect me and what I would need. An impossible question to answer, cystic fibrosis often affects me in random unexpected ways. My needs have developed as my course has progressed, sometimes the University has lagged behind in supporting requirements which have cropped up mid-term.

All in all I certainly do not regret returning to University. It has not been perfect but results aside, it has served its purpose. At times I have been incredibly frustrated with how I have felt I have been treated, but, I am a fighter at heart who never ever gives up, and it has paid off.

Good bye Northumbria.

A weeks notice

My Dad has been having hearing trouble for a while. After a few visits to the ear hospital and to his GP, he has been referred to have a cast of his ear taken, incase he needs a hearing aid. Of course, we dont actually know if he needs a hearing aid yet, he'll see the consultant after the cast is made...but it may never be used! Anyway, he was told to wait for his appointment to come in the post. We were away on holiday for 7 days a few weeks ago. The hospital sent the letter on the day we left, and his appointment had been scheduled for the day we got back. Is 7 days notice really enough? Id say no. I can only assume they give this little notice as a way to massage those ever important waiting lists for their government targets...

A couple of small ones

My gran made an appointment at her GP surgery because her ankles had become swollen and very itchy sore. She was given an appointment with a nurse. The nurse diagnosed arthritis of the ankle, gave her some soothing cream and told her nothing could be done and she would have to live with it. This was the first time she had heard anything about having arthritis in the ankle.

3 or so weeks later, and surprisingly, the cream hasn't done any good at all, and my gran is starting to get depressed. She doesn't usually complain about her health at all so this must be affecting her quite badly. We eventually convince her to make another GP appointment, this time explicitly requesting to see the doctor. 5 minutes with the doctor, a diagnosis of side effects from her high blood pressure tablets. Tablets are reduced slightly. A week later, the itching has stopped and her ankles have begun to reduce in size.

I know Dr Crippen has long gone on about how badly trained Specialist Nurses who see patients on the front line were. My own experiences with my CF Nurse Specialist has always been nothing short of amazing, yet all the other contact members of my family have with them are seemingly negative. I wonder why that is.

*****

A family friend has been told she needs a knee replacement. She has had weight problems for years which it is thought brought on the damage. However, over the last few years, before the current problems decided to manifest, she has been a regular at the local gym, and has lost a large amount of weight.

She has been told that she cant have a knee replacement until she is 60. She is currently in her mid-fifties. Why the 5 year wait? Replacement knee's last 10 years, if they gave everyone knee replacements when they actually needed them, we couldn't afford to replace after 10 years of use. I find this disgusting. She has already started to gain weight because her knee is too painful to allow her to continue to exercise. I assume it would be medically logical to think that if they did the operation now, while she has not put too much weight back on, and she was able to exercise afterwards to keep the weight off, the knee has a hell of a lot more chance of lasting any amount of time than if they weight for 5 years worth of weight to be gained and open her up then. And to think Sunderland General recently spent thousands of pounds paying consultants to find out how they can save money!

Boxing

I'm having injections at the moment, so am producing a huge amount of sharps waste. After years of problems, a situation had finally been created where I could drop off my current full 25 litre sharps box, and a new one would be waiting for me.

For the second time in a row, there have been no replacement boxes to give me. The first time around it wasn't too big of an issue, because I was not on injections, but this time I am. I am irritated. Its just a box for God's sake!

The end

Well it had to happen some time. I am finally finished University. I will be writing a summing up post at some point, but not now, as I am on injections. Thought I better get them over with as I havnt had them for over 5 months, quite a time for me.

Missing

I started on a high dose of Augmentin today to as a preventative measure as I'm feeling a little under the weather. 42 tablets written on my prescription, how many did Lloyd's Pharmacy give me? 14. Sigh.

Where are my drugs going?

I dont know why, but my GP surgery has started missing random drugs off my requested prescription. This month it was Sodium Chloride, so I cant make my nebuliser drugs up. Why? Who knows.

Food for the Soul

Food and Cystic Fibrosis. For most of my life the two have been in conflict.

In the news recently has been a story about a rather large boy from the North East. And last night I watched the House of Tiny Tearaways. You get lots of children with eating problems on there. It got me thinking about Cystic Fibrosis and food, and how eating was dealt with when I was a child.

The basic rule from clinic was that someone with CF needs to eat twice as much as a normal person of the same age would be expected to. You have yourself a steak for tea, would you really normally want to eat a second one? I certainly wouldnt, id already be pretty stuffed. This type of reality was generally lost on staff, who offered up advice based on pure medical research about how much fat the average person with CF can absorb, without considering how in reality a parent is going to force their child to eat so much.

My parents didnt really know how to go about making me eat this much. They felt they were in the situation often seen on the House of Tiny Tearaways, where a child eats barely anything, and the parents constantly fret about it. My parents used to think me not eating twice as much as a normal child, meant I was on the edge of death and I had to be forced to eat more and more and more. So day after day, a huge pile of food was put infront of me, with my parents standing around trying to make me eat it all. Meal times often lasted over 2 hours.

Over the years, this negative association with food resulted in me hating the act of eating, hungry or not. Not too conducive to me eating twice as much as I was. Eating had become more like punishment. I certainly dont blame my parents at all, they were given no advice at all on how to make a child do something which was essentially totally abnormal. No coaxing techniques, no psychological advice, nothing. I find that quite disappointing really. It affected a large, non-medical part of my life for a large number of years when it need'nt have. A few years ago I was temporarily put on steroids, this made me unbelievably hungry, and resulted in me, for the first time in a huge number of years actually enjoying the act of eating. Luckily, the effect continued long after the steriods had stopped.

Lets have a month off

I was unable to do any work during the month of December. This was because, for reasons unknown, injections hit particularly hard this time round. Why? Who knows. Sometimes its just like that.

The problem is, its very hard for someone not in my position to understand, when you look outwardly fine, how you find it hard to do any work. "Just do a bit here and there". Not really possible when I dont have the energy to actually sit up straight on a chair, nevermind put some thought in to what I have to do. The only contact I have had from University since December, was a request to come in and confirm my contact details. I turn up and they arent technically wrong...my name just isnt on the list of people doing degree's! I was told they'd sort it, and I'd be emailed to let me know when to come in and confirm my details again. Ive yet to be contacted. Oh well.

More prescription balls

More silly mistakes with my prescription.

First off, we were told the drugs would be ready in 6 days time. Nothing too unusual there these days.

When we turn up 6 days later, we're told that the driver is only then, that day, at the GP surgery dropping off my request for drugs. What he's been doing for the last 6 days, we do not know. Come back tomorrow.


Back tomorrow. Here are your drugs.
So my drugs normally come in a large Tesco sides carrier bag, full. Only one box this time though. Something was missing. Actually everything but my Colistin was missing.

When we request drugs at the Pharmacy, they write exactly what I need down on an A4 piece of paper, which is handed to the GP Surgery to prepare my prescription for later collection. The Surgery was called by the Pharmacy...no one really knows why none of the other drugs were added to my prescription. Oddly though, a prescription for all my other drugs was prepared, collected and delivered to the pharmacy within 2 hours. Normally it takes 48 hours just to have it printed. So I got most of my drugs eventually. Except there is a shortage of Creon, so I'll have to go back later for that.

Ive decided to take prescriptions out of the hands of the pharmacy from now on, and just bite the bullet and make the extra trips getting a monthly prescription sorted now requires. I long for the return of the good old days of request to drug within 24 hours.

I don't need no good advice, Im already wasted

Recently, I received my shiny new e-flow nebuliser. Its been great, so quick and quiet. I was given "training", it took 5 minutes and was done by the woman who normally does the breathing tests at my RVI clinic.

I saw my CF Nurse from Sunderland today, I had a few questions.

Firstly though, when I had my training at the RVI a few points were made:

Equipment provided:

• Carry bag
• Power pack
• Batteries
• Battery charger
• Power cable
• Mains cable
• 1 Mouthpiece with valve
• 1 drug chamber
• 1 rubber seal thing
• 1 metal contraption which turns drug into aerosol
• 1 chamber top and seal

On use of different drugs, one after the other:

I was informed that I could use dnase, then Colistin, in the same chamber, without any cleaning, as long as it was a short time afterwards.

On anti-biotic leakage:

Something was mentioned about a tube attachment which extends out of an open window. This was to prevent curtain rotting apparently. However, this idea was dismissed as not too important and left at that.

On cleaning:

No particular direction was given on this. It was pointed out that the manual will suggest things like buying your own desterlisation machinery, and to ignore this. Otherwise, follow the instructions in the manual. I asked if we should be boiling the equipment as we had done with my Halo-lite? The answer was yes.

-

Over the last 6 months or so I have been occasionally browsing the CF Trust web forums. On there I had read a few things which conflicted with the advice id been given at the RVI, so I compiled a few questions to ask my CF nurse, who I was to see shortly.

They were:

1. Should I be removing my Colistin from the fridge 15 minutes before its use? The reason for this is that I had read that using it cold could induce inflamed airways, making it difficult to breath. I had noticed that since starting with the new nebuliser I had felt a little breathless after use.

2. Should I or should I not have different equipment for each drug I use? I had read on the forums that most people, although not all, are given separate pieces of equipment.

3. How exactly should I be cleaning my nebuliser equipment? I wanted more information as the manual contradicted itself.

And the answers...

1. The answer was no. Apparently Colistin can make you feel tight chested if you have asthma. I used to have asthma a long time ago. The effect seems to be wearing off the more I use the new nebuliser so I'm putting it down to not being used to such large doses of the drug. Even if you have asthma, removing from the fridge earlier would have little effect.

2. Yes, I should. Dnaze and Colistin react with each other in a negative way. I was advised to stop using Colistin immediately. What I should have received were 2 separate pieces of equipment. One for dnaze, which does not need any filtration, and uses a mouthpiece with a valve to release excess drug. And one for Colistin, with a sealed mouthpiece, and cotton filter adapter to prevent the excess release of drug into the air. Not only to stop our curtains from rotting, but more importantly to stop exposure to other family members and pets in the same house. The cotton filter needs to be changed after each use, so twice a day. You cannot get these on prescription, they are supposed to be supplied by your CF clinic. These 2 sets of equipment have to be kept separate at all times.

3. One thing I should not be doing (luckily I hadn't gotten round to it yet!) is boiling them. It melts them!!! I should also be making sure that each individual nebuliser equipment is washed in separate containers with separate water so cross contamination cannot occur.

-

I was actually really surprised to be told all this stuff. It never really crossed my mind at the time to question anything I was being told at clinic. It seems there has been a huge lack of training at some point. As far as I am aware, Newcastle has no supply scheme in place to provide cotton filters, which will for now have to be shipped from Sunderland to a local care centre, where I will have to pick them up every so often.

The little things

Its surprising the difference the small things make. Over the last couple of weeks I have been trained how to use a flutter properly, it took 5 minutes, and has made a world of difference. I don't actually remember why I wasn't trained initially, but I should have been. This week I also received a shiny new e-flow nebuliser. Its very small, portable, and treatment now takes a gigantic 4 minutes. Total morning treatment is now down to 18 minutes. Never again will I need to get up at 5:30am to get to a 9:00am lecture. Joy.

All Quiet on the Medical Front

Right now things are pretty stable medically. Im having no trouble obtaining drugs, sharps boxes or even expensive nebulisers and flutters. Maybe the fact that im demanding a little less of the NHS by not being as ill means im not entering problem territory with them at present.

I had the Politics Show on in the background while I got on with some University work this morning. They were talking about recycling in the local area, and then on to the issue of packaging. It just made me think of some drugs I get, which I cant do without. Theyre called Creon 25000 and help me digest my food. If I didnt take them, what went in would just come out...it isnt nice. Anyway, they come in tubs of around 100 tablets. This is how they have come for as long as ive been taking them. Now they come in tubs of 100, in individual boxes. Its takes me 4 days to use a tub, so you can see how many I get through in a month. Why has this extra packaging suddenly appeared? Who knows. Its a waste either way. Thankfully, Sunderland Council does do cardboard recycling. Unfortunately, not in my area. Which means if I really want to be a good boy and recycle, I have to drive a fair distance, polluting all the while, annoying.

I have been meaning to recount something which happened to my Gran last year for some time. Her back had been sore for some time with what she thought was a spot. She eventually decided that she needed to see a doctor, so phoned her GP surgery. There were no appointments available for 2 weeks, but she went along with this and booked anyway. Two weeks later and a taxi ride to the surgery (she refuses to let us take her by car ourselves), only to arrive on time and be told that both GPs were off, one on holiday and one on the sick, but no locum had been arranged to cover. She was offered to be seen by a nurse, but she refused, wanting to be seen by her own GP, and went home. A few days later she has gotten to the point where she cannot sit with her back against the seat back she is in so much pain, so she rings up and makes an appointment to see the nurse who appears to be covering for both GP's. The nurse has a look, tells her it is a cyst and gives her some oral anti-biotics, saying if it hasnt cleared, to make another appointment in 2 weeks time.

In the mean time, a few days later my parents went to visit her. My gran let my mother have a look at her back. What she described was a wound, around an inch in diameter, which was open and weeping puss. This was a Saturday, so a normal trip to the doctors was out of the question. After some persuading, we took her to one of the new drop in type services, where she saw...another nurse. This one had a good prod about and attempted to clean the wound out a little. She failed. We were told to visit casualty, as a doctor would probably need to surgically remove the infected areas for it to have any chance of healing properly. The infection had already started to spread up her back. So my gran is taken to Caualty by my parents.

At Casualty, they were greeted by another nurse. This was a nurse with a bad attitude who without even looking at my gran's back, declared "we dont do cysts here". They were bungled off to another drop in clinic near the hospital. And seen and poked by another nurse, who also failed to remove everything, who then passed my gran onto a doctor in the drop-in clinic, who after a few seconds of investigation declared her wound was way too bad to be treated here, and she needed to go to casualty right away! This time they returned to casualty accompanied by the nurse from the drop-in centre who explained the doctor's orders. This time, the same nurse had a completely different, nice, attitude and my gran was booked in and told to take a seat. And what a seat, 4 hours later she saw a doctor, who cleaned out her wound as much as he could in a non-surgical way, then had her admitted to hospital properly.

Up on ward, another nurse came to take my gran for a quick examination. My gran is registered blind so my mother instinctively got up to guide her down the corridor after the nurse. When the nurse turned round to see where my Gran was, she saw my mother and said something along the lines of "you, wait out here" and continued to walk off again. When my mother explained why she was walking with my gran, she got an "oh, ok". Really, whether your accompanied or not, blind or not, should be the choice of the patient. If she was really concerned about my mother being present at the examination, a simple question to my Gran would have been the appropriate thing to do.

Things went great from then on. My gran was operated on that night, spent the night in hospital and was released in the morning. She was visited regularly by a district nurse to inspect her wound and change her dressings. This continued for over a month afterwards.

I cant help but think that if my gran had been seen by a doctor in the first place, weeks earlier, either he could have removed the infection himself and the wound would never have gotten so big, or he would have refered her to hospital straight away and she would have been operated on without all the extra hassle. She is in her 80's and really did not need a day like this. Her problem was not a complicated one, this should have been bread and butter simple for the NHS to deal with. Sadly, it was not.

My Spline

I sent a letter to my GP to have my details withheld from the Spine today. Who knows if it will really work. I have a general dislike for any government run data collection regimes. Anyway, Ive managed without everyone in government or any other arm of state having direct electronic access to my medical records for over 20 years, I'm sure I can manage into the future.

One thing I am curious about, which I have not found any information on yet, is non-GP medical records. When I go to Cystic Fibrosis clinic, they always drag out a huge wedge of medical records, in obligatory brown sleeve. Will this be Spined?

A good breath

Good news, I am getting an e-flow. Not sure when, but I am definitely getting one. My CF clinic is allowed to buy one per month, so now I just have to wait!

OK

I got a box, no problem at all actually. Annoyance averted.

Hit me

Most people with Cystic Fibrosis have some kind of physiotherapy on their chest. I have tried a few. The initial and current method is for me to lie on a 'frame' which is high at the back and low at the front, so I am draining out of my lungs, and have someone do percussion (hitting me palm down with cupped hands) on every part of my chest. This lasts about 20 minutes. When I was alot younger, a new technique was derived which although still used to frame, would eventually mean I could do physio independently. I have a feeling it was called the Active Cycle of Breathing, but I may well be wrong. It was very complex and entailed learning how to breath from specific parts of your chest in different ways. It actually turned out to be very useful in general at teaching me how to control my breathing, but was awful in practise for every day physio. It lasted at least 45 minutes per session, and required concentration throughout, not easy when your 9 and its 7 in the morning. That was abandoned after a few months for traditional physio. The status quo continued for many more years.

When I moved to Newcastle RVI another method was suggested, I really cant remember its name. It meant doing breathing exercises either at the same time as receiving percussion, or on its own. Its not that is was particularly hard, although I am still awful in the morning. I have always found physio one of the most depressing aspects of CF treatment. Although for a 2 week period every few months injections are hell, I do not have them all the time, and although taking tablets with almost every bit of food I eat could be considered a constant reminder, it only takes seconds to shove them in my mouth and forget. Physio takes a definite 20 minutes every morning and night. When I'm doing OK mentally it isn't so bad, but when your already down I find it affects me alot. A distraction exercise is what ive eventually done when having physiotherapy then. I tend to read, it takes my mind off whats happening and makes 20 minutes feel like 5. There isn't alot you can do while lying face down on an exercise frame, but reading is easy. Doing breathing exercises at the same time, which require concentration, mean I cannot read, thus physio feels like it lasts for hours. I did try and persevere with this method, but I have to admit it was not for me and I failed. Its easy to find excuses not to do treatment at all when you hate it, so I ended up having less physio than when doing traditional percussion only. That's why I'm back doing that now, and I rarely miss it. Its all about balance.

One other option is something called a flutter. Its a device which you place into your mouth and blow into. The only device I have tried, a number of years ago, looks a little like a miniature smoking pipe, with a cover over the pipe end with holes in. It has a small metal ball inside which jumps about when you breath out, sending vibrations or flutters down into your chest, supposedly moving stuff that is stuck in your chest. Medical research, from what I could tell, went randomly from saying it was a total replacement for physio, to something which should be done in conjunction, back to a replacement. I like the idea, its totally independent, and more importantly, you can do it while sitting doing normal things. It was OK to use, easy enough, although I could not tell whether it was doing me more or less good than physio. It was quite disgusting though. Simple bad design to me. Every time you breathed out, which had to be quite a hard breath, your spit flew out through the top and landed on your face. Not pleasant at all. Use of this didn't last very long.

Ive been informed by my CF nurse that there is a new flutter. It points away from your face, so no spittle soakage and apparently is very effective, even compared to physio. I have a feeling I was told it was hands free, via a face mask, which would also be excellent. How do I get one? Apparently I need to ask the CF Physiotherapist at the RVI if I can have one. I also found out that we have a new physiotherapist. Very new in fact, because it seems we haven't had one at all for at least 6 months, maybe much longer. I don't recall the last time I actually saw, or was asked if I would like to see, a physiotherapist in clinic. When I was at Sunderland, you saw the physio at each and every session. Considering how important physio is considered in the upkeep of the CF body, its surprising and a little depression that up until now, the RVI may not have had one. I'm hoping I can try one of these new fangled flutters, it would make a positive change to my life.

The sharp saga continues

Re: The needle tears a hole, The old familiar sting and At the sharp end.

I went to exchange my full sharps box a few days ago. Ive been on injections for the last couple of weeks so it was completely full. Ive also finally used up the dozen boxes which the practise nurse snuck out of the back door of the surgery for me, so this time I actually do need a replacement box. They took my old one no problem, as usual, but there was not a single large sharps box to be found in the whole of the health centre. A 1 litre box was offered, and refused. Apparently replacements are going to be in the health centre soon, we'll see. Luckily, injections are now finished and my only sharps are produced by nebuliser medication preparation, small fry in comparison. If I had still been on injections, I'm not sure what exactly they would have expected me to do, a 1 litre box does not suffice for even one lot of injections, and I have 3 every day.

I, like the majority of people, have to pay for prescriptions. I use the pre-payment method because the number of drugs I have to get is insane. Every month I get at least 7 different types of medications, sometimes more. This is not like cold medicine, if I were to go without these, I would die, simple as. Very similar to people who suffer from Diabetes. As it happens, diabetics, and people suffering from some other conditions, automatically get free prescriptions. Why these? I'm not sure, although the note on epilepsy stating for "continuous anti-convulsive therapy" gives an idea...continuous. All my regular meds will be needed continuously for most of my life.

I have to admit I tend to fall on the side of free healthcare, per-se. That would include free prescriptions, eye tests and dental appointments. However, the point of this post is more fairness than anything else. I simply fail to understand the reasons why Diabetes gets you free prescriptions, and Cystic Fibrosis does not. If prescriptions should not be free, then make everyone pay. Is my illness less important than diabetes for some reason? I do not see why.

Free prescriptions for Cystic Fibrosis sufferers was actually a 1997 election pledge from Labour, it never materialised though.

Too much, Too much

I am on injections at present. Yet again, as is always the case, the in-patient pharmacy at the Sunderland General have got it wrong. I don't think we have actually had the requested medication match the given medication yet. This time, some of my drugs were out of date, and when my nurse requested replacements, we were given way more than what was requested. Such a waste, because once they leave the pharmacy, you cant return them, they will just be binned.

Reminder: Are you fertile?

A few months ago I recieved a letter from the Newcastle upon Tyne Hospitals NHS Trust, in association with the Newcastle Fertility Centre, at the Newcastle Centre for Life.

It was a research project into Awareness of fertility problems in men with Cystic Fibrosis. I assume my details, and others, were passed onto them by the RVI. Research is almost always a good thing, and fertility is certainly something which I feel has been almost entirely overlooked by both Pediatric and Adult clinics I have been involved with. I filled out the survey and sent it back straight away.

A couple of days ago, I got another letter. It was a reminder. If I hadnt already, would I please consider filling in the research survey and sending it back, and if I had, ignore this. Kind of fair enough, although i'd be interested to know how many extra people this is likely to snag, maybe there is some research on it? Personally if I didnt fill something out first time, im even less likely to do it on second time of asking. What was also included though, was a duplicate of the survey I had already filled in and sent back. I cant help thinking what a waste of postage, and tree's.

I found it mildly annoying. Im sure the sums of money, which I assume will already have been allocated to this specific piece of research, are not going to be large. Still unnecessary though, and if this is the norm for NHS research, expanded wastage. I understand that privacy and anonymity are important, but im sure a system must exist to anonymously track returned information, without revealing personal details.

I find the subject of the research interesting. Not because I have a current interest in having children, but because the survey covers topics which have never been covered with me in clinic before, and because it misses one important question.

I have always known about fertility problems in people with Cystic Fibrosis. This came mainly from my parents who educated me about it as soon as I could understand what it meant, and odd comments at my pediatric CF clinic. When I first started at the adult clinic, you have a kind of initialisation interview, where most areas of yourself are at least lightly touched on, this is with the CF Consultant who I believe is primarily a chest doctor. Do you know its possible your infertile? Yes. OK.

I am pretty sure, that like most areas of growing up with Cystic Fibrosis, having information is simply not enough. I do not know if this is common among other people with CF, but I find im often told by people outside immediate family how well I cope, how 'brave' I am, and so on. They do not really understand. When I was going through pediatrics, especially before my teens, life expectancy for CF was not good at all, maybe mid 20's? You were often told this, however that was it. I doubt much thought really went into how exactly this kind of information would affect the children. Certainly no psychiatrists. Clinic visits deal with your chest, your weight, technical aspects of doing physiotherapy, and diet, they do not include your mind.

Control, for me, seemed to be the only way to 'cope' with things. I was taught something called the Active Cycle of Breathing, how to breath from different parts of your chest, primarily to make you cough things up. I found it also enabled me to control my breathing to what seemed like my advantage, I could stop myself coughing on demand, to some extent suppress wheezing. Even if I didnt feel well, I could often pass myself off at clinic as being well, which meant no injections, which meant I felt in control. Unfortunately into adult hood I found that control in this area spilt into other areas of life, negatively affecting relationships because I could not control aspects of them which I felt I should be able to. You get the picture.

One day in 05' something clicked, and I realised I had to change, and I have. Of course, I cant escape the fact I have CF, but I have found that of all the things over the last 20 odd years I have done to control, or improve my health, my recent mental attitude has been the most important. If I had been helped from the moment I had been diagnosed with the mental aspects of my illness, I feel things may have progressed very differently. My adult CF clinic still lacks a psychiatrist as part of the care team, I feel that is wrong.

Baby Brown

Brown's son has cystic fibrosis (BBC News)

As above. I can kind of understand why the media may think its news, Im not sure it should be though. Im sure it could anything, but it feels like 'Gordon Brown's son is different than ''normal'' ' thus must be reported as important.

What I did note was that the news reported messages of "sympathy" for the Brown's. I do not like that, I would not want sympathy myself, nor would I want it for my parents. It implies a negative. Maybe support would have been a better word?

I note I also got linked to from a BBC website solely about disability, called Ouch. I have to admit i've never heard of it before.

Sniff sniff

I was talking to one of the lab technicians at University lately. He used to work for the NHS testing people's blood samples for things like hepatitis or HIV. He left, obviously, one of the reasons was pointless management.

One day, a part of upper management for his team decided that a health and safety review was to be undertaken, with every single member of the analysis team being watched for a 2 week period. Primarily his job was desk based, and when samples were handled, the obvious precautions were taken. At the end of his 2 week assessment, the whole department had to attend a meeting which took several hours, then each worker had an individual meeting with the manager who had been doing the assessing. In his meeting he was told that for health and safety reasons, he had to remove the bottle of tipex on his desk. This was aside from the fact it was a newish bottle, tipex is legal and used in schools, so has to be relatively safe anyway, and, that he had not touched a drop of it during his 2 week assessment. Other colleagues were told similar things. The manager was on a wage of at least £38000 a year. Hm.

The jab

I had my flu jab today. I lied about not being feverish. I was ordered to by my CF medical staff, because they perceive it is more important to get the flu jab, than to worry about short term side effects from it, I agree. The practice nurse may not, so it is easier to lie than complicate the issue.

While I was in getting the jab, a few things came up. No letters were sent to any at-risk patients this year, a decision made by the Practice Manager. Unfortunately, it turns out that the many TV adverts and posters up in the GP surgery were not enough, and a number of known at-risk patients did not come forward for their jabs. Thus the GP surgery had to phone everyone who had not booked in anyway, maybe the normal reminder letters would have been easier? Or at least, if your on "the list". The list comes from the Department of Health, and I was told today, did not contain Cystic Fibrosis as an at-risk condition, which is why I never get letters. The only reason I even get flu jabs is because my surgery has a policy of always giving the jab to CFers. I always thought this was a DoH problem, so I started looking around the DoH website to see if I could find out why Cystic Fibrosis wasn't on the list, and who I could contact for more information about this. Eventually I came across this (PDF) document from last year, which appears to be direct advice from the Chief Medical Officer at the DoH. On page 3, what do I see listed on page 3? Cystic Fibrosis. I managed to find this years document soon after. I was wondering whether CF had been removed from the list. But no (PDF). I wonder why I have been told for so long that the DoH do not put CF on the at-risk list.

-

A lot of the main headline news today has been about the murder of a child by a teenager. The exceptional thing about this case, apart from murder, is that the child had Cystic Fibrosis. I'm not sure why but I found it kind of annoying that every single report highlighted that he had CF, above many other things in the case. Like when reports mention that someone is black, or gay, should we be assuming that everyone is automatically normal? This child should be defined by more than his CF. One report mentioned that he'd been suffering from CF since he was 6 weeks old...must be one of the first people in history with CF not to be born with it!

My dad had pneumonia a few years ago. When my CF nurse was here a few weeks ago to flush out my P.A.S. Port, she mentioned that he would now be considered at risk, and should be eligible for a flu jab. The department of health, and my GP surgery say not. I assume their is some valid medical reason that my CF nurse thinks people with pneumonia should have the jab, it's annoying he cant.

I saw the list of acceptable illnesses which qualify you for a jab, it wasn't very long, and had some weird words id never seen before on it. I'm not sure the receptionist recognised them either, when we asked whether pneumonia was covered, she said it might slip under one of the words, but had to go away and check, no luck. Apparently this year the DoH has been very strict with who can get the jab, maybe those people on the list in previous years just weren't at risk enough? The other comment was that some surgeries offer the jab to other slightly less at risk patients, if they have ordered enough of them, which is why I have heard of a number of surgeries giving jabs to whole families with someone with CF in the house. In other words, my surgery has not ordered enough for anything more than base list from the DoH, on purpose?

Brainwash TV

My mother collapsed yesterday morning. I'm not going to go into why she collapsed, but she was dealt with by the NHS.

Call to 999: Good
Transfer to Ambulance handler: Good
Arrival of Ambulance within 5 minutes: Good
Treatment by Ambulance crew: Good
Mother taken to casualty in Ambulance
Mothers treatment in Hospital: Good

So we pulled a few things together, and I drove my dad up to Casualty at the Queen Elizabeth Hospital. We had to sit and wait in the main casualty waiting room while my mother was treated by a doctor. It was quite empty, and we only had to wait 15 minutes, but I couldn't help notice the nice new flat screen LCD TV which was hanging on the wall. On it was a rolling set of government adverts, the ones you often see after midnight telling you to eat 5 a day, to give up smoking, and a really weird one explaining exactly what food fell into which category. For instance, did you know Milk was a dairy product? Well I certainly felt well and patronized after that.

For a start the adverts are just terrible, kids playing baseball with carrots, or using vegetable trading cards, ugh. Thankfully I wasn't sitting their with a broken leg, and our wait was short, but if I was stuck in the waiting room for 4 hours and had to watch these adverts and accompanying annoying music, it would drive me insane. They really have gone too far in pushing all that stuff, surely the money spent on the LCD TV could have been put to better use?

Some more days

I use Lloyds Pharmacy. Today, while trying to chase up why my Collistin hadn't arrived yet, after being ordered 6 days ago, the woman at the serving desk gave us a mini-rant. Apparently, my GP surgery is the worst one they deal with, they are least likely to approve drugs for patients, and when they do, their admin policies are the most complicated. An example she gave. It relates to my previous post on changes to prescriptions my GP surgery made.

Patients do have another option for ordering prescriptions, they can travel to the surgery itself and fill in a form requesting either an individual drug, or a repeat monthly prescription. A few days later you travel back to the surgery to pick up the completed prescription (in the olden days, step one was just a phonecall away). You would think in these days of doom surrounding global warming, they would want to reduce, not increase un-necessary travel. What happens if between posting your prescription request, and it being processed, you get ill and cant make it back to the docs to pick it up? Simple, you phone the pharmacy, and they pick it up on your behalf. You'd think anyway, especially if you already have an agreement signed with the pharmacy giving permission to handle prescriptions for you, but no. My GP surgery requires that after the pharmacy is phoned by the patient, they have to fax through a request to be given permission to drive over to the surgery to pick up the prescription, this normally takes a few days, so the patient waits even longer. Why cant they just turn up at the surgery and show the consent form, then pick up the prescription within the space of a few minutes? Who knows, none of the other GP surgeries require a fax. Who uses fax these days anyway? Maybe they could just phone instead?

When the switch was made to force patients to phone their pharmacy instead of their GP, I was told by the pharmacy that once they had my request, they just phoned the GP themselves and passed on the request. An extra step for nothing. Now though, things have moved on, technology has taken a step back, and the phone has been hung up. After I tell the pharmacy I need a prescription, they have to physically take the request over to the GP surgery and hand it to them, then the surgery processes the request, then the pharmacy goes back and picks up the prescription, then orders my drugs, so it takes even longer. To make matters worse, when phones were used to order a prescription, the request would be put in straight away, at least the same day, now, the driver only drives over prescription requests on certain days (I don't know which days yet), adding even more delay into the simple request. Something which used to be completed within 24 hours for monthly prescriptions.

She then went on to recommend a few good doctors in the area. I really don't want to change doctors, medically my GP is excellent, and I get on well with him in general. The admin of the surgery as a whole has been frustrating me more and more over the last few years. Something to think about.

Just the one

I'm now booked in for a flu jab in the middle of this month. Some new things, some expected things.

For some reason, not explained, patients are no longer allowed to specify a time. I think it sounded like you could say, "I need an appointment on day x", but you had to take the first time available, its never been like this before. I would assume that at-risk patients would find it hardest to make very early appointments, I certainly do when I'm not well. Luckily the next slot for me was lunch time.

I have received no letter, yet. Its possible it will turn up within the next couple of weeks, I look forward to finding out. For the second year running, my parents will not be entitled to flu jabs. According to the receptionist, "they are being very strict this year" with who can and cannot have the flu jab. Who "they" are was not elaborated on, it could be anyone from GP upwards but its hard to tell. Either way, recommendations made by my Cystic Fibrosis consultant are not going to be carried out by my GP surgery. I was informed that if their were any jabs left free after the at-risk patients had been done, they may or may not be allowed to get them. I hear on the grapevine though, that the Sunderland General Cystic Fibrosis clinic gets a stock of flu jabs for CF patients and the people who live with them, yet I've always been told by Newcastle RVI that they get no jabs at all, and that they are the sole responsibility of my GP. Why would things be so different?

That time of year

As I ate breakfast this morning, I watched a report on BBC News 24 about a shortage of flu jabs. I hadn't thought about the flu jab yet, but as luck would have it, my CF nurse was due to come out to flush my P.A.S. Port today. I asked whether it was time, and yes, I should be having my jab now or within the near future. It seems that yet again, Cystic Fibrosis has been left of the at-risk list at my GP surgery, even though it is generally agreed that CF is an at risk condition. This has been happening for some time, the nurse at the surgery who deals out the jabs agrees, I should be on the list, so do the receptionists, yet they apparently have no way to modify the list, it is given to them by the government and automated letters are mailed out. This seems wrong, surely my GP is in the best position to know if I'm at risk or not?

I've got a bad fever at present so I'm not going to book myself in for one yet. (if it's even possible at the moment) I'm not the only one with this problem either, not that I know anyone else personally in this situation, but over on the CF Trust Forum I read a similar story. If I do have trouble, apparently ASDA have lots in stock, as long as you have a prescription for one, which I'm sure can be arranged somewhere.

Days

For the last 17 years, prescriptions at my GP surgery have worked like this: I have 2 different sets of prescriptions. One for drugs such as Creon, which I use approximately the same amount of every month, and need every month, and another for drugs such as Nasonex, which I only need when I feel a sinus infection coming on. So for predictable, repeatable drugs, my GP surgery used to automatically create my prescription about a week before it was due, for me to come to the surgery and pick up when a drug ran out. Id then take the prescription to the pharmacy the same morning, who would have pre-ordered my drugs for me, and by the end of the day I would go back and collect them. Time from wanting prescription to getting drugs: under 24 hours. For more random drugs, I would call the surgery, tell them what I wanted, and the prescription would be available to pick up in 2 days time. Time from wanting drugs to getting drugs: under 3 days. So a few months ago my GP surgery changed their policy. They no longer automatically create any prescriptions, nor are you allowed to phone them. Everything is now done at the pharmacy. I now have to either drive to the pharmacy (or phone, but a little more about this later) and request my monthly prescription. The pharmacy then phone my GP surgery, and request my monthly prescription, then my GP surgery create my monthly prescription on demand, which takes a few days, then, my pharmacy sends a driver over (only once a week I believe) to pick up my monthly prescription and delivery it to the pharmacy. The pharmacy then order my drugs and sort them out. Time from wanting to getting drugs, 5 days. For individual repeat prescription the situation is similar. So, first time experience for regular big prescription came round. My pharmacy had been informed earlier of the change, so had my GP surgery details on file. I walked in and asked for "my monthly prescription please", I said this because it is exactly what I have been saying at my GP surgery forever, and on discussing the change with the receptionist, was told that although I was now dealing with the pharmacy, it would work in exactly the same way. I was told to come back in a few days time, so I did. When I went back to pick up my drugs, the receptionist started sorting through my items on the front desk. I had to stop him mid-sorting, because I had started to see medicine passing by which I had not taken for years, and certainly did not need now. In fact, the pharmacy had managed to order every single drug I have ever had on prescription, im not sure how, nor were they, and because I had not heard what they said when they called my GP surgery, and I was not allowed to call my GP surgery, I don't know and will never know who caused what. It was then explained that "normally" patients who order prescriptions via the pharmacy bring along the slip off the back of their old prescriptions, ticking exactly what they need. I don't own one of these slips. Anyway, I rejected a good number of drugs, some which I will probably never need again, others which I would need maybe in 3 months time, but not now. Not only this, but when I said I wanted to reject, I was informed by the person at the desk that when I came to order the individual drugs next time, my GP surgery would probably reject the request themselves, because of me ordering and rejecting them at this time. Why on earth should I be penalised when someone in the system made this cock-up, not me? I rejected anyway. I decided to call the PALS (PDF) (Patient Advice and liaison). The lady on the phone listened and said she would look into it for me. A few days later I was called back and told a few things. Firstly she said she would send me a leaflet on electronic prescriptions (interesting, but not really relevant at present), and secondly, did I know I could phone up the pharmacy and order my prescriptions that way? Yes, I did. The reason I actually phoned, to find out why this change had been made, was not really answered. The general answer I got was "in order to improve the level of service to the patient", odd. I don't really see an increase from less than 1 day, to 4 or 5 days, an improvement in service. Nor did I expect this kind of response from an independant body, but this was the message that was repeated. I assume what she really meant was that it was saving the GP surgery money. I did find out later that PALS is not really independant, and is funded by the local PCT. What I was expecting when I phoned was for PALS to find the real reason, provide evidence such as meeting minutes, who made decisions, who in terms of patients were consulted, how much money this may or may not save, etc. So anyway, that is how it is now. I was told I could change GP but I don't really want to, the actual medical side of my GPs is excellent.

Nebulisers

I havnt always used a nebuliser. It started when I was about 17. I was given a bog standard NHS nebuliser, a face mask, and lots of Colistin. What I found was that nebulising this anti-biotic made my nose bleed and my eyes go red raw. I was given a mouthpiece instead of a mask, this did not stop the side effects.

Not too much later given a Medicaid Halo-lite. It was part of a trial for the drug Dnase. The deal was that patients who used the drug, and thus the NHS, would be able to use one of these very expensive, at the time, nebulisers, as long as they stayed on the drug.

The Halo-lite was sold to us as having some very useful features. It would only pump out the drug when you breathed in, so less drug was needed, and because of this, treatment would only take around 10 minutes. It would also contain a microchip, which your CF nurse could plug some kind of diagnostic unit into in order to download a daily record of my breathing patterns, endlessly useful for analysis at my next CF clinic. So how much of this actually worked in reality? Yes, we use half the amount of drug we used to, however... On average, if I complete a full treatment, it actually takes 40 minutes, not 10. Occasionally the machine takes on a life of its own, and instead of pumping out drug when you breath in, it just does it randomly, even if your mouth never goes near the nebuliser. The most promising feature from a clinics point of view never actually materialised, none of the nebulisers my hospital was given had any kind of diagnostics port, so clinic leant nothing new. Years ago, like when I first started University, I used to dilligently follow my full treatment. This meant, when I had a 9am lecture, I was getting up at 5:30am, often after working till 1am. This was something that could not go on indefinitely, so I now do 10 minutes of each drug, a more realistic time. Unfortunately it also means im only getting 1/4 of the drug I should be, although im not doing too bad without it. On the plus side, since excess drug does not get pumped out onto my nose or eyes, I no longer get a bloody nose or raw eyes.

So, I have heard about a new nebuliser, its called the Pari E-Flow. The information given to my CF nurse, from the Pari rep appears to say it will complete treatment in about 5 minutes, and will do it more efficiently than any other device on the market. On the other hand, it costs £400 to buy, and has a £90 a year service charge, although this is apparently what the hospital is currently paying for my Halo-Lite. Of course, Sunderland is paying for that, and has a completely different policy than Newcastle, who I would lilely get any new nebulisers from.

The NHS has to provide me with a nebuliser, a nebuliser that works, but takes no account of effectiveness of treatment, or quality of life. Apart from injections, daily nebulising is my most time and mind impacting treatment, it can be the most depressing as you are tied to the machine, and tied to the time it takes to complete treatment. Thus, a small, portable machine which completes the treatment in 5 minutes would be a big quality of life bonus.

Sunderland CF clinic are currently trying to gain funding from the PCT for a batch of these e-flow nebulisers. In the mean time, some parents of children their have been doing fund-raising to raise money for them, something which they should never have to do. Newcastle CF clinic are thinking about it, and looking into alternative cheaper nebulisers as they do not wish to pay £90 a year maintanence. I am in limbo, I cannot use normal nebulisers because of the side effects, my current nebuliser is essentially ineffectual, and I have no way of getting an e-flow because of differing policies of local hospitals. For me, if we are going to have an NHS, it should be there to provide the best treatment possible for everyone, not "just good enough" treatment for those who cant afford to provide for themselves.

I am unsure how to proceed at present with this situation.

Show me the money

During the last year, when I have been doing a standard/normal degree program, I have recieved the Disabled Students Allowance, a grant, a student loan, and Incapacity Benefit.

You have to recieve permission from the benefits office to enter education while on Incapacity Benefit. This was easy to organise as I had status, the status of a full time student and an official course. The same applies to grants, student loans and the DSA.

I now have no status. In August I went to talk to an advisor in the Access Guidance Centre, I explained the situation and gave her a couple of days to look into it. A couple of days later I was informed that I would recieve no financial support this year, because I dont fit into any government category for support. I then made an appointment with one of the disability advisors for further advice. The situation was once again explained, and she decided the best action would be to contact my LEA and see what they had to say, but that the Access Guidance Centre had been wrong, and I may be able to get financial help. The call came a few days later. I could get support, I just needed to fill in a form with my details, these details included my status.

So what am I? A trip to my departments reception, an explanation of the situation, and a few seconds of thought said I was probably a part-time student, but they better check. Another chat with the disability advisor and I was told this was not good enough, if I was a part time student, I had to be a certain type of part time student, a percentage part time student. What percentage would I be? Reception did not know. Reception decided to contact the registrar, who had apparently negotiated by position with my personal tutor. I got an email a few days later explaining that the registar had no idea what I was, and that I should speak to my personal tutor, who was currently on holiday.

I had the meeting this month. I was told that knowing the status of students was the job of the registrar, not of a lecturer, but it would be chased up anyway. The next episode happens on Tuesday, but he thinks I am still a full time student. So what am I?

The problem is that if I am a part-time student, I need to re-apply to the benefits office to be allowed to continue education part-time, if I am actually full time, I need not bother. Time is running on, the later I apply for help with finance from my LEA, the longer it will be before I get any help, meaning I may be essentially money-less for another few months.

Great Balls Of

I had a hernia operation a few years ago, it was both a positive and a negative experience. Having CF, I am supposed to be given a room on my own to stop the transmission of disease from all the other unhealthy patients. I was supposed to get one, but they ran out of the appropriate ward for hernia repairs so I was moved elsewhere, to a ward where they fix the bones of old people, I don't remember its actual name. Initially I was put into a normal ward with many people, until they realised there mistake and put me into a small side room, complete with a TV with no handset.

Things were ok though, the nurse-who-wears-brown was extremely friendly, and although my operation was delayed for 6 hours because of an emergency, I went down to theatre without problem. Theatre was the best part of the experience, it was clean, all the staff present were excellent, and things went along very efficiently. I even got to watch the surgeon pulling my intestines about in the reflection from the overhead lights while listening to a Coldplay album. I saw sewn up and carted back to my little room.

I was surprised how painful it was as the epidural wore off, no-one had mentioned pain to me beforehand. I put up with it for a good while until my parents turned up, then asked for some painkillers. I was told I could have some, but only if I had something to eat first. My toast came and went, and so did my parents, but painkillers? No. So I was effectively trapped in my room, in too much pain to get up, in too much pain to shout, so of course I reached over and pressed the "need assistance" button. Actually, no, I didn't, because my bed was 3 metres away from it and all I could do was wave my arms about. I didn't see a nurse for the rest of the night.

The next morning I was checked over by the surgeon, and an attractive junior doctoress who got to see me naked, yay. Everything was ok so I was told I was free to go. I waddled to the main reception and booked out, also asking for some painkillers. I was given a box of paracetamol, they are useless. I was not given any information pamphlets or general advice.

I had never felt pain like this before, where it physically lifts your body up in a spasm as it waves over you. The paracetamol was having zero effect. I hobbled to see my GP the next day, he did a quick physical exam of my wound and prescribed me 2 very strong painkillers which certainly did the job, and also made me feel very happy, why didn't the hospital give me anything like this?

Over the next few days my groin swelled up, the chord which my testicle hangs of went hard, everything went purple and my left ball grew to the size of a potato. No-one mentioned potato balls before the operation. My CF nurse was due to visit the next day anyway so I explained the situation to her. I was given advice such as, wear something that supports your balls, like y-fronts, and a number of other do's and dont's. Things progressively improved from that moment on until I made a complete recovery.

So, the doctor/surgeon type stuff was excellent, the ward/nurse/after treatment stuff was bad, and my GP and CF Nurse were good. If someone had simply explained what may, or was likely to happen post-op, I think I would have found the operation much easier to cope with.

Live and Let Learn

I've had a trying 7 months. I handed my semester 1 coursework in at the end of January, semester 2 lectures started a week later. Unfortunately i'd been working without break since my last course of injections before Christmas, so I was left starting the next semester in a somewhat "down" state. I seemed to muddle through most of the lecture period, I think I probably got to about 65% of my lectures, I had injections in April, and again in June. Although I was getting to lectures, doing so was leaving me rather tired so I was not progressing well with work at the end of the day, or on days off. I had been working on a "bit-by-bit" basis up until the injections I had in June. I had been under the impression that I had a generally very flexible extension on all my work, which in essence said that I would work when I could, and get work in when I could, so in other words I had no set hand in dates.

About a week into my injections I got a call from university telling me that some members of the department, via something called an exam board, had stated they were not happy with the current situation, and I had to try and get a piece of work in within the next week, meaning working full time at the same time as having injections, not something I would normally do. Injections give me a range of side-effects, these range from general tiredness, discomfort from the needle/plaster/movement combo, mild depression, and other mental and physical effects. One of the worst effects, I find, is on concentration. As an example, if I sit down and read a paragraph of text, I still have the ability to read the words, either in my head or out loud without problem, however, ask me what the paragraph I read was all about, and I would not have a clue, the ability to take in information largely disappears, so working on complex coursework with information coming from tens of sources is quite a struggle.

Anyhow, I did force myself to work during this period, and did get a piece of coursework in within a week, although I was not really that happy with it. I then took a weeks break to try and recover from injections a little, and proceeded with my other coursework. In the meantime after meetings with my personal tutor the situation was explained as this. Some of the staff are of the opinion that the system should be relatively inflexible, where any student, whatever the particular extenuating circumstance, gets a set maximum period in which to complete work after the extenuating circumstances have been accepted. If you have another extenuating circumstance, or your initial extenuating circumstance continues in a variable fashion as mine does over the period, they are essentially ignored. Certain staff appeared to be arguing that this means all students were being treated equally, which is technically correct. If a student was unable to catch up with work within this maximum extension time, work would be deferred to the next exam board time, which was August. The same maximum extension would be in place this time. If a student then had a continuing extenuating circumstance past this period, there work would either be perpetually deferred (technically you are supposed to be set a new assignment, to start from scratch, each deferral), or you would be given something called an agrotat (I think) degree, which is essentially non-honours, and which I already have, so that would be stupid. Luckily I did manage to get all my coursework in within the deferral period.

This situation really bothered me, because in treating all students equally, they are assuming that everyone's extenuating circumstances are equal in limiting effects. They are saying that when certain disabilities have certain affects, it is not your intellect which is the deciding factor of whether you can complete a degree, it is your simple rate of work. I have proved through results that when I am well enough to work, I can achieve results in the 2:1 and 1st brackets, however I cannot, even when considered "well" put in as much work as a totally able bodied student. Surely, if you can prove via medical certification, or assessment, or other manner that you, for example, can only work at half the pace of a "normal" person, it would be fair to be given an extension long enough for you to be able to complete your work to an appropriate standard. Although this appears to be the view of the majority of the exam board, a few lecturers who know me in person voiced support for myself and my problem.

Then comes my dissertation, which for one reason or another, has not largely been entered into yet. Initially I was informed that I would need to have my dissertation in by August also, giving me about a month do it, as well as my unfinished coursework. This was unrealistic. On my behalf, outside of the exam board, my personal tutor negotiated with the University registrar and made a deal in which I would be given a series of rolling extensions depending on my current state of health. I would have to pay a £120 writing up fee, similar to what Masters degree students do, in order to keep access to lecturers, computers and library facilities. My current deadline is December, which is something I would personally like to achieve. If I am ill between now and then, and thusdon'tt manage to complete the work, I will need to submit personal extenuating circumstances medical evidence again, which is fair enough, and my deadline will be reconsidered, and so on, and so on. Apparently I am the first undergrad student in the University to be allowed to use the payable writing up option. I hope, but doubt, that this would be written into University rules for any future students with substantial medical problems instead of just making this a one off. There should always be this kind of facility available for the small number of people whogenuinelyy need to use it, itshouldn'tt be a fight to be allowed to complete your degree.

I have been considering continuing my education into a masters degree for some time. On mentioning this though, I was cautioned that the masters degree has quite a high workload, and so I should think carefully before applying. My mental ability to actually deal with the work was not questioned. This again, bothered me greatly, and I have not yet decided what to do in the future.

Locomotion

Is it normal for locum doctors to be so uninterested?

My Cystric Fibrosis has given me a tendancy to get bad sinus infections. The first time I had one I assumed it was yet another bad cold, until my whole head hurt and my nose was full of sticky dried blood. A quick course of normal anti-biotics fixed me up pretty fast.

I had a succession of these at one point, which resulted in my CF consultant refering me to a sinus specialist to be checked out. Poking, prodding and a CT scan later I was told nothing was really wrong, it was just a CF thing id have to live with, but I could learn to control it.

I was given a spray called Nasonex. By the time all these checks had been done id gotten to the stage where I could tell if I was getting a sinus infection or just a cold way before my nose blocked up with blood, just by how my head and body felt. The normal way of things was to take this spray as soon as I felt something. If after a week or so things hadnt improved it was likely the infection was going to set in, and I would require pre-emptive anti-biotics. I know that in normal medicine, this isnt the best course of action, people shouldnt go to the docs for normal coughs and colds. But what tends to happen with CF is, if you treat things somewhat pre-emptively, I will most times end up getting what I thought I might get but very badly. My GP has been OK with this pre-emptive treatment for my sinus problems, I would therefore assume it is in my notes, along with the fact I have CF, and my file is 5 times larger than most other people.

I got to this point, but my GP was on holiday and I was given an appointment with a locum. I expained the situation to the locum, I could feel I was getting a sinus infection, some blood had started to appear in my nose, could I have some anti-biotics please? No, I was told. You cant have anti-biotics until the infection is fully blown. I try to explain that by that time it will be too late and I will be saddles with a bad sinus infection which may be hard to shift. Nope. I explain the drug I was given last time, and that I normally take it for a 2 week period. He then asked why I was given such a big dose for so long. Dont you know I have CF? No. Although my file was sitting infront of him on the desk, he had not looked at it, nor did he open it to confirm or deny what I was telling him about my past sinus problems, or my CF. I did get my drugs. I argued with him until he gave in. His attitude and general manner are terrible, very snappy, he certainly doesnt appear to like being a doctor. My GP surgery always get this locum in. I dont see him anymore, it isnt worth wasting that much energy to get a simple treatment.

I can understand almost everything he did, because I look like a normal patient. I cant understand why he did not even flick through the first pages of my notes.

Catch 20 Flu

The importance of getting the flu jab to 'at risk' groups seems to be endlessly highlighted on the news when it comes to winter time.

I am 'at risk'. Getting flu can put me out of action for a month.

At risk patients are supposed to recieve a letter as soon as the flu jabs are in stock to let them know they need to make an appointment for a jab. Like many people, us 'at risks' can have bad memories too, I have trouble remembering things all the time, though I think the drugs have a part to play in that. I cant remember now what the ideal month to have the jab is, the letters help.

Or they would, if I ever got one. Although my CF consultant, my CF nurse, my GP and the practise nurse agree I am at risk and need the jab, the computer says no. Flu jab reminder letters, as far as I can gleam, are created by some central NHS computer system. The system contains a list of diseases and conditions which are considered 'at risk'. Cystic Fibrosis is not on it. Because my GP surgery cannot alter the list, my name cannot be added to it, so even though everyone directly involved in my medical care knows I should be on it, they have no way to achieve this.

This leads on to a second problem. Even if I remember the correct time to have my flu jab, the GP surgery has a rule where in order to make an appointment to get a flu jab, you have to have a lette, because I dont have a letter, I cant get an appointment...see where this is going? What usually then happens is a lengthy explanation of the situation by me, the receptionist then remembers the situation from last year, and they squeeze me in when they can, if I remember. This happens without fail every year.

Along with the recommendation of me getting a flu jab, my CF healthcare team also recommend that my parents have flu jabs. The reasoning is that if they catch flu, then I am more likely to catch it off them. Makes sense. The NHS makes no provision for this what so ever. Last year, my GP surgery ran out of flu jabs. The only option was for my parents to get a prescription for them, and try to find a chemist who happened to have any. It transpired that only one chemist in my whole town had any left, and we were lucky to get it. My CF nurse did the jabs. Either way, although I was able to get a jab from there main batch, they were not allowed to give this to family members. If my parents had not managed to find there own jabs, and they got flu and passed it to me, my flu jab would essentially have been wasted.

In the olden days, when I was a child, my CF clinic at Sunderland General dealt with flu jabs. When time came for your Winter appointment you and your parents would get flu jabs. No letters, never any problems, and I occasionally got the pleasure of stabbing my CF consultant with his own flu jab. I dont recall why things changed and became so complicated, but I sure as hell dont look forward to fighting for flu jab time any more.

Back to the Black Board

Aside from not having computer access, and issues with my dissertation, I did restart University in September of 2005.

What a culture shock. Its amazing what 2 years can do, I had no idea how to access any systems like email or e-journal searches, and quite a few other things had changed. Id also seemingly forgotten how to research and structure essays, and especially reports, and how to use the specific referencing system my University demands. I muddled through somehow, but in reality I needed what the initial freshers get when they first start, a crash course in general skills needed to get through the year.

Talking to my Personal Tutor at the end of the first semester, it was mentioned that in reality I would have benefited alot from going to some of the first year courses as well as doing my third year units, or possibly some other sort of course to get me up to speed. The problem is, they have never had to deal with anyone "with a condition like yours". I cant really blame them to some extent, my condition can be absolute hell to manage alot of the time, being stable one day, and unpredictable the next. I assume they have had people with difficult disabilities in different departments of the University, and in many ways individual tutors and heads of department will have found useful management solutions. As far as I can see, these never leave the individual departments though. It would be useful to have some sort of feedback mechanism, whether through optional regular interviews with the students with these disabilities, or with the staff memebers involved with the management of the students problems. This would hopefully mean that everytime a student turns up at the University who is definitely going to have problems, at least everyone involved can start out with a little more than zero knowledge of how to control the situation.

Pain in the neck

When I was 15, I had a device called a P.A.S. Port installed in my right arm. This was done at Sunderland General and served me well, giving me 10 years of problem free injections. Then, in December 2004 it began to block up, and over the next few months became virtually un-usable. I was scheduled in for a replacement at ended up being given a date in April 2005.

When I had my initial P.A.S. Port put in, I was given the choice of having either a traditional PORT-A-CATH put in my chest, or one of the the new style P.A.S. Port arm devices. After weighing up the pro's and con's I decided on the much smaller arm device and one was installed successfully. This time round, I found things have changed. Newcastle RVI informed me that they "prefer" chest implanted PORT-A-CATH devices, and thats what everyone in the clinic has had done. A number of advantages were explained to me which I took on board. When I enquired further, it transpired that in the local area of the North East, no one had the expertise to implant a P.A.S. Port device, so whatever my thoughts, I had to have a PORT-A-CATH. There must be someone in the country who can install one of these devices I asked, why cant they do it? My CF nurse told me they were very unlikely to refer me elsewhere.

After some thought I decided to go for a chest PORT-A-CATH anyway, not because I might have had to fight for the other type but because it seemed like the best option. Although having a needle stuck in my chest is generally more uncomfortable and I have less body mobility while im on injections, I found not being able to fully use my arm over a 2 week period very frustrating, its not like im extremely active when im on strong drugs anyway and im more likely to be sitting at home feeling crap and wanting to mess around on the computer or do other things around the house to take my mind off it, my arm is more important.

The operation went ahead in April. The nursing staff in the ward I was in were amazing. They were incredibly understaffed, it appeared there was about 3 of them covering all of us. Even so, they were extremely friendly, possibly the friendliest ward staff ive ever been in contact with. As well as normal nursing things they also regularly cleaned the ward and served food, and even set a little time aside for small talk with the patients to stop them going insane from the boredom. The operation itself was mainly successful. It was put in under a local, although by the time they got round to stitching me up it appeared that most of it had worn off so that was somewhat painful. The surgeon also decided that since he had no experience with P.A.S. Port devices, he'd let someone else remove it. That was to be the plastic surgery department.

18th April 2005: I get a letter from the hospital telling me that I have been given an appointment on the 17th May 2005, but if I want to keep it, I have to phone them within 2 days. This seems a little short, what happens if im away on holiday that week? In fact, if its that urgent it would be better if a receptionist phoned me and asked in person. Anyhow, I confirmed this was ok.

17th May 2005: The waiting room was awful. Hot, sweaty and tiny, and absolutely packed with people, some of which didnt look well at all...it cant have been doing them any good. When I was seen the consultant examined my arm, told me what she planned to do and that was that. I should expect a date for my operation shortly.

24th May 2005: I recieve a letter from Newcastle RVI telling me I am on a waiting list, and that I must complete a form telling them whether any of my contact details had changed, and to specify dates I would not be available. It seemed odd, first of all, if my contact details were wrong, I would never have gotten this letter, which leads on to, why on earth didnt they just ask me this, or ask me to fill this form in at the hospital, or, give me the form at the hospital when I was there in person and ask me to send it back to them. They then both guarantee I get the form, and save some postage money. I send in my form.

I hear nothing for 2 months. When I phone the department to see what was happening, I was told that the consultants secretary was on holiday, and no-one else was allowed to access her timetable database. Not very helpful. When I phoned back 2 weeks later, I got through to the correct receptionist, but was told the consultant was now on holiday and I wasnt mentioned in the timetable, but she'd find out what was happening for me when the consultant returned. I hear nothing until I go for my CF check up in the middle of August. They decide to find out what has been happening. I get a call in a weeks time informing me that my operating will happen next week.

It transpires that a large number of people who recieved burns in the London Bombings were transfered up to Newcastle because of its specialist burns unit, this meant that non urgent cases like myself had to be put on hold for an extended period. This was fine, it would have been nice if someone could have let me know at the time though instead of the wall of silence.

Unfortunately, my operation was a failure. On admission in the early hours of the morning I was told to wait in a day room with lots of other patients. We waited here for about 5 hours before we were spoken to again, and I was moved to a bed in a main ward. This presents a problem for Cystic Fibrosis patients, it is advised that we are put into seperate isolation rooms when in hospital for anything, the two times I have had operations at Sunderland General, this has happened, the two times ive had operations at Newcastle RVI, it wasnt. At the time, I was way to nervous about the operation to even think about that but afterwards it did annoy me a little. So im lying on the operating table, my arm cut open and the consultant pulling on the cable which runs up my arm and into my neck. I could feel a strange sensation in my upper arm, similar to if someone was pushing and pulling a piece of rope up and down a vein in your arm...which they were. It wasnt budging. The cable was stuck, most likely in my neck. The consultant decided she did not have the expertise to go on any further.

I hadnt heard anything for just under 2 months, at which point it was time for another check-up. My arm was brought up with my CF consultant who agreed to write a letter to the consultant plastic surgeon to see what was happening.

5th December 2005: I recieved a letter from the Plastic Surgery Consultant. Well I didnt directly recieve one, it was sent to my CF consultant and then forwarded onto me, and my GP. The letter said.

- I am writing in reply to your letter dated 27 October 2005. I have discussed (Me) with (the Surgeon who put my PORT-A-CATH chest implant in). I note that you are keen for his long line to be removed. However, the risks of embolisation of fragments of the line up his carotid artery would be significant. On balance, we do not believe that it would be in the patient's best interests to pursue this line of action. If you disagree with this opinion then may I suggest that you refer the patient to one of the Vascular Surgeons for a second opinion -

What on earth did all this mean, I wondered. If they are going to send me a letter they could at least put it in intelligent patient English. I am a scientist by University education, and I look at things in a questioning way. I needed a better explanation, as far as I was aware the line in my arm was intact, in fact if it was about to snap into fragments id be feeling rather worried. What was creating this risk of fragmentation? I find it hard to take anyone, including a doctors stated opinions as hard facts automatically. Ive learned from my education that in most cases there are no certainties, just theories put forward by experts with differing views, you read both views and come to a conclusion based on the arguments put forward. I asked for a second opinion.

I had been recommended a Surgeon at the Freeman Hospital and so was referred there.

20th January 2006: I recieved a letter which said:

- Thank you for your recent letter regarding the above gentleman. I have reviewed his case and x-rays with both my Vascular Surgical and Radiological colleagues in our recent Vascular Multi Disciplinary Team Meeting. It was universally felt that in view of the fact that this right-sided occluded line was causing no problems at the present time and previous attempts at removing it from the arm had been unsuccessful, that the line itself was better left in situ. The line is almost certainly incorporated in the wall of the vein and any further attempts at removal would be extremely hazardous and certainly there would be nothing to be gained from this. We feel therefore that no further action is required and I do not need to see him in my outpatient clinic. (Vascular Surgeon) -

Hmm. The first thing that caught me was "causing no problems". I suppose from a strict vascular point of view I wasnt, but I do suffer from discomfort on my forearm, weird noises in my neck and occasion catching which results in severse pain. The other thing that bothered me was that no real reason was given for it not being removed, except for a statement of danger, without any extra information on what exactly was causing this danger. Apparently its unusual for a patient to write direct to a Consultant, or at least thats what family seemed to think. I wrote:

- I would just like an explanation of exactly why removal from the vein wall would be extremely hazardous. I would also be grateful if you could inform me of the general risks of leaving a partially blocked P.A.S. Port and line in place for a significant amount of time. - I would also like to state that, although the port in medical terms does not cause any significant problems, in quality of life terms it does have an effect. Knowing that a foreign body is embedded in yourself, which is of no use is not a generally pleasant mental experience, when lying down on my right side the line can be heard moving against my neck, I cannot play guitar because of the location of the port itself and it is easily caught on things. - I am also curious of advice on what I can do with the line staying in place. For instance, can I play golf, or use upper body training machines in the gym which require the use of both arms? -

Reading now that looks like quite a snappy little letter, but I was not really very happy at the time that it had taken so long just to get what is really a small amount of relevant information about my arm.

25th January 2006: I recieved this letter back from the Vascular Surgeon, I was pleasantly surprised to get a reply.

- Myself and my colleagues considered further attempts at removing this line to be hazardous as it is clear from (Plastic Surgeon) operation notes that this line is incorporated into the vein which was used to pass the line into your central veins. Simple withdrawl of the line was not possible. In these circumstances it is difficult to see how the line could be removed without removing the whole of the vein itself, and as this is extending into the major veins into your neck this would be a very major undertaking and would carry a considerable risk to you. - Indwelling devices within veins are commonly used in modern medical practise for a wide variety of reasons. Many individuals have lines in situ for prolonged periods of time, often for the whole of their lives. Complications associated with them are relatively rare. - You mentioned the fact that the actual port itself is causing some problems in the arm and it may be possible to remove this but leave the actual line in the vein in place. This may help reduce the inconvenience that you are experiencing. I would certainly encourage you to be as mobile as possible and go go about normal everyday activities, including the activities you outline in your final paragraph, as I would be very surprised if this would cause you any great harm. I am sure if you wish to go ahead with removal of the port (Cystic Fibrosis Consultant) could arrange for this to be done at the RVI by one of the plastic or general surgeons, as this would not require specialist vascular intervention. Alternatively this could perhaps be done at your local hospital in Sunderland where I note the original device was inserted. -

Excellent, this letter not only went on for more than 2 sentences but gave me all the information I needed to know, not just a clinical yes or no. I was refered back to the original plastic surgeon.

23rd March 2006: I received yet another letter:

- I am writing in reply to your letter dated 15 March 2006. I did consider removed the port and leaving the line in place when I had (me) in theatre. However, the attachment of the line to the port stops it from migrating. I have reconsidered the matter and do not believe that it would be in (me) best interests to remove the port, even though it is currently causing some discomfort. If the port was removed then the line might migrate and it might be difficult to locate. -

---

Well, that was it, it looks like i will have this port and line in for the rest of my life. I really dont understand why it has to be so damn hard to get any information out of the NHS service, everyone seemed quite happy to just leave it at the first cant do wont do letter. If a letter in a similar vain to the second vascular surgeon's one had been written initially, I would have understood exactly why it could not be removed, why the port itself could not be removed, what the risks of leaving a port in long term were, and what I could and could not do with the broken P.A.S. Port and stuck line left in place. 6 months for some real answers.

Just another brick in the wall

In April 2005 I made the decision, after 2 years out of University that id rested myself enough, and I needed to get my life back on track again. Back to University to complete my Undergrad degree I decided to go.

I went into uni the next day in search of my old head of department. In 2 years the department had been split in 2, the head of department was new, but was also leaving in 5 months time, things were a bit chaotic. That said, I found the relavant person eventually and they remembered me from my past life there, I explained my situation from 1999 onwards, the details of Cystic Fibrosis and so on, and explained that when I left in 2003 I was told I could return any time within a 5 year period to complete my degree. The department was really enthusiastic about me wanting to return, and it was agreed that my priority between now and the start of my 1 year single honours course would be getting up to speed with my dissertation, which at that time was obviously non existant.

I was feeling good. I went around the department talking to various staff members about potential dissertation topics, narrowed my field of ideas down a little, and then was given instructions on what to do next, a literature review. At University, all the paper literature is stored in the library, and all the e-literature is stored on secure websites on the internet. When I left in 2003, the only security in the library was a security guard who very occasionally stopped you and asked you to show your library card, in general you could walk in and browse the shelves un-checked and un-watched. When I returned, in place of this was a big brother style scan yourself in, scan yourself out smartcard system, consisting of the old security guard still sitting in his place, now watching a monitor which occasionally flags up a student who's passed through the system's details. I now have an RFID non contact smartcard which I must use to enter or leave the building, enter the sub basement reference section or enter the gym. I dont like it, personally, im not a fan of RFID in the first place but I was never told what details are actually on my card for the security guard to browse over, and in the past I was quite happy for my tuition fee's to go partly to let outsiders browse the library for free.

I had no smart card, I had no access to the library building and I had no access to the University metronet or any of the e-resources which require either my computer username details, or an ATHENS login. Not a problem I thought, id been through this in the past before the fancy new system was in place and had been given access after a request was made by my department with no hitches, so my department tried the same this time.

"We'll just add you to the system, and you should be able to log in within a week" my department said. I tried after a week, nothing. "Try waiting another week", nothing. "We'll email the IT deparment to see whats going on", bad news. The IT department informed my department that because I was not currently enrolled as a student, in no way could they give me access to the computer systems. My situation was explained to them, I had an exceptional circumstance which my department believed warranted them making reasonable allowances to help me complete my degree. No, sorry, no exeptions.

A brick wall. I thought it might be a good idea to go and have a chat with the Disability Advisor in the Student Services department of the University. I explained the situation, although it was the same advisor as when I left and I believe she recognised me. I then explained my predicament and asked what the disability services department of the University could possibly do to help me. I got, "it's just the way it is, there's nothing we can do". I must have been under the wrong impression about the department because I always thought they existed to "fight" for students with disabilities.

So that was it, I kept popping back in every couple of weeks to see if anything had changed, and nothing did. After a period of about 2 and a half months the then head of department had an idea, and decided to make up a story that involved me being employed by her to do research work she did not have time to do herself. Hey presto, working computer and library access is given to me. So everything was fine then? Well no, not really. About a week after this I fell ill, and remained ill until September, I then went into hospital 2 weeks before the course was about to start to have an operation to remove my P.A.S. Port so I couldnt write for a couple of weeks after that. Timing had gotten the better of me.

I was really bitter after this. I went into the course im currently on at least a year behind the average student on there dissertation and it is always inevitable I will fall further behind during a normal year because I have to take so long off when im getting injected anti-biotics. If id actually been able to do the research work I need to do through April to June I would have been able to go straight into data collection as soon as the course started and be essentially on par with alot of other students. I was well in April, and essentially had nothing else of substance to do so it would of had my full attention.

I have nothing but praise for my own department, they understood my situation and wanted to act positively to get me back to work in the best way possible, they bent over backwards for me. The unseen IT department was like your basic computer, robotic and unflexible, not understanding and helpful. Although the problem came from the IT department, i was most disappointed by the attitude of the disability advisor, not the fighter I expected.

After this incident I decided to join the Equal Opportunities committee in the Student Union to at least try and get into a more pro-active situation.

The needle tears a hole, The old familiar sting

Oh my, so long since I last posted. Unfortunately University and life in general has left me with little time over the last 6 months to get down to blog writing, other things to think of!

This morning I am thinking about boxes, big yellow boxes. I'm going to give an overview of 3 years in my life I spent fighting for a big yellow box. It has a happy outcome, but its not a happy story.

Once upon a time, a much simpler time, whenever I needed one of those large yellow boxes to put my needles and other drug paraphernalia into (sharps boxes), I would wander down to Sunderland General, or at least my parents would drive down there, and we would swap our old used sharps box, for a nice shiny new one. It was a smooth efficient process which both parties were happy with and continued in this status-quo like fashion for over 10 years.

Then, out of the blue, we are told that Sunderland General have decided they can no longer afford to provide these boxes to patients, and we would have to get them from our GP instead. A number of phone calls later from me, my parents and my nurse, my GP surgery eventually agrees to supply me with these boxes in a similar swap basis as existed at the hospital. My GP surgery has a few separate departments...we have the GP area itself with reception for Appointments and Prescriptions and the doctors themselves, a practice nurse's office for things like flu jabs, a district nurse's office for whatever district nurses usually do, a treatment room where normal nurses give basic treatments and a main reception with a receptionist. I was to obtain my sharps boxes from the practice nurse's office. This was fine for a time, in fact in some ways it was better than before because my GP surgery is closer than Sunderland General, but has more restrictive opening hours (Sunderland General were quite happy to dish out sharps boxes late into the night if we realised we needed one).

An amount of time passed, months I think, although its hard to remember its quite some time ago, of this service going on ok, until one day I went to swap my sharps boxes, to be told that the practice nurse has been ordered to stop giving out sharps boxes, and that they were now available solely via prescription from the main GP area. Fair enough I thought, as I was getting free prescriptions at the time, so I wandered over to talk to the receptionist. Yes, you order your new sharps boxes here from now on I was told, you can have a maximum of 2, 1 litre boxes at a time I was told, I laughed. During my injections, I can fill up 1, 25 litre sharps box in under a week with used syringes, needles and other items, not to mention the fact that the 1 litre boxes are too small to fit a single 20ml syringe into. I explained the situation to the prescriptions receptionist, who explained to me that it was out of her control, a decision from above and nothing could be done.

I stopped trying to get anywhere with the receptionist and went back to the practise nurse's room to talk to her. She is a really nice lady who always goes out of her way to help if possible. It was explained to me that the change had happened because the new (at the time) NHS trust who sat above my GP surgery had negotiated a contract with a commercial company to supply sharps boxes, the only problem being that the contract deal was ONLY to supply 1 litre boxes and nothing else, and no other arrangement had been made for people with more exceptional needs. She managed to find a couple of spare boxes in her office after a search and let me have them to tide me over until next time. 3 or 6 months later I return, to find that absolutely nothing has changed, no-one will legitimately give me a sharps box, and the practise nurse gives me her last spare one while no-one else is looking. This only lasts a week, and I'm back to square one again!

It was then recommended to me by my CF nurse that I try phoning a new service available to NHS patients called PALS (patient advice line), which I did. The person on the phone was really helpful and told me she would investigate the problem. A week later I received a call from them telling me that for now I was to be provided with a number of 5 litre boxes, and that in the future, my 25 litre sharps boxes would be provided by the main reception, The 5 litre boxes turned up, and since I had recently finished injections they lasted me another 3 months before I needed to swap them. I decided to call the main reception to make sure of opening times, and that I could come in to swap my sharps boxes, and was plainly told by a nurse in there that they have no boxes to give out. That was it though, there was no suggestion of what to do next, offers of help or explanations, she wasn't interested. Not having anywhere else to go, I went back to my main GP office and explained the situation, but as far as they were concerned, the main reception was supposed to be supplying them, and that was that, stalemate! I happened to bump into the practise nurse in the corridor on the way out and talked to her about the on-going situation. She disappeared for a while, then told me to pull the car round to the back door, where her and an elderly janitor ran out with 12 25 litre sharps boxes, in anonymous brown boxes and bundled them into the boot of my car. They had been sitting in a cupboard in the surgery the whole time, but for me to get them, a nurse had had to sneak them out of a back door. I called PALS again after this to explain the situation some more.

The next call I got was from a District Nurse, who had apparently been put in charge of the issue by the GP surgery, and had been liaising with the PALS service. An agreement had been come to, again, where I would pick up sharps boxes from the main reception (they had been told in no uncertain terms that they HAD to give me a sharps box on request), and I would return used sharps boxes to the treatment room. Another 3 months past, and I had filled up one of the snuck out sharps boxes, so took it into the treatment room to hand it over. Who closed the box, I was asked. I told the nurse that I had no idea, one of my parents had locked it while I wasn't in the room, and id just brought it over to hand it in. The person who locks the box has to have filled in the form on the side of the box I'm told, a form which me, nor my parents had filled in in over 20 years. I ask why, and get told that its something there bosses in the trust wanted done, and they would get in trouble if I didn't sign it. I then asked, if I signed it, and something happened to the box, resulting in contents leaving it, and someone being stabbed by used sharps, would I be open to prosecution. I was told, yes, I would be. I then flat out refused to sign it, put it on the floor and told the nurse I wasn't going to argue, she could either take it herself and note on the side I refused to sign, or get someone else to sort out the problem because I wasn't taking it home with me. She agreed to note this down. I had a good reason for refusing. For one, I really didn't know who had closed the box, second, injections of strong drugs often results in slight confusion and not-knowing-what-im-doing-ness, this manifests itself in everyday life when I try to do things like putting the bottle of milk away into the microwave instead of the fridge. This to me, meant that I could not be 100% sure that I personally had secured the box correctly. I was quite happy to have a nurse or other official inspect my closure work then sign it off themselves, because I would hope the GP surgery has liability insurance, and any mistake made would be covered by this, unlike me who can't afford to buy insurance for box handovers alone. As she was doing this another nurse came in, saw the sharps box and said "do you need another one?", and before I could answer, "because if you do, you cant get them in here, you have to get them on prescription". I then went on to explain the arrangement which had supposedly been come to within the GP surgery, she argued that it did not exist and the only way to get sharps boxes was via prescription, and I turned around and walked out.

Yet another 3 months down the line and I am wandering towards the treatment room with another full sharps box. As I'm about to open the door, a janitor runs down the corridor after me, asking whether I was handing the box in, I said yes, and he said he would take it as he was dealing with them now...that's odd I thought. He did not request signatures for proof of opening and closing the box, he was just happy to take it off my hands. When I got home, I hunted out the district nurse who was liaising with PAL's number out and gave her a call to ask who exactly I should now be handing my box in too. Main reception she said, the rules were changed over a month ago, no-one had informed me though.

Last time I went in with my box, I handed it over at main reception, nothing was asked for, no problems were encountered, I was amazed.

So what's all this about? I know, hopefully, this saga is done and finished with, but it highlights some huge problems in the system. Moving from the easy hospital system, to a working GP system took 3 years, 3 years to be able to swap one large plastic box for another large plastic box. It wasn't like I was asking for super expensive drugs, just a box to put the needles I cant help producing into. This is such a small issue, yet it created such a big hassle in my life because everytime I was undergoing injections, a time when I feel extremely unwell, I was having to fight the system for a poxy plastic box to put my drug things in. Moving from hospital to doctors, I wasn't really bothered, I would have been happy to continue getting them from the hospital, but was also happy to get them in the same fashion from the doctors, it just didn't work out like that.

In the initial stages, the lack of real information really really annoyed me. None of the reception staff were at all happy giving me information on who had made these decisions regarding sharps box procurement. I was told it was those above, management somewhere, very vague things. The more helpful practise nurse told me it was the Trust, something which at the time I had never heard of, but I wasn't given any more information. What I wanted was to find out what body had made this decision, I wanted to see who proposed it, why it was proposed, the minutes from the meeting where this was decided, which company would only supply 1 litre boxes, why was that company chosen, why wasn't it done in a completely open way. None of this was available to me, so I felt like I was fighting a brick wall.

On the other side, communication between the numerous small departments in my GP surgery was obviously non-existent. After one department was informed that I was entitled to 25 litre sharps boxes, it got no further, id go on to the next department, where id been told I had to pick my new box up from, and they would not have heard a word about it.

A happy ending, but it should never have been this way.

In My Place

Division of Treatment between Sunderland General and Newcastle RVI.

Basic principles:
Every 2 months, or so, I get a check-up at Newcastle RVI. Just the basics, weight, breathing, diet, physiotherapy, chest, general well being.

Once a month my Port-A-Cath is flushed out by my nurse practitioner

Over the course of a year, in a somewhat random fashion I fall victim to colds, the flu, lots of other virii, minor chest infections and major chest infections. About 90% of these are treated by my nurse practitioner.

In practise:
I do question, to some extent the value of an all-in-one-room CF clinic in which a number of people with chest infections go every 2 months to infect each other. I almost always come out of CF clinic with an extra cough or wheeze. For a time line of “how i am doing” though I do understand it. I feel now that the management of my condition is much improved because of the access I have to my nurse practitioner.

If I don't feel well my first point of contact is my nurse practitioner. On most occasions she will come out to my home to do some further assessment, then discuss with me (if any is needed) treatment options. For minor drugs she calls my GP who then provides me with a prescription, for major drugs, or some of them, she liases with doctors at Sunderland General who authorise provision of them through the hospital inpatient pharmacy. I am very happy and comfortable with this treatment, I don't have to visit hospital (my worst nightmare) to gain treatment and I get to deal with someone I have come to trust.

The problems:

It all comes down to money. I don't really know the ins and outs of how NHS money is separated and spread around (though I would quite like to), but it appears that Sunderland and Newcastle have completely separate budgets. Currently, neither are happy to provide the services I use although there is a nervous status quo in place at the moment.

At Newcastle:
We don't “do” home treatment.
The RVI CF clinic does not do any home visit treatment, from what I can tell because of policy and monetary reasons, its just “not the way they do things”. When I first started attending this clinic every effort was made on there part for me to completely separate from Sunderland and any treatment which I received from them. This wasn't something I was, or am, willing to do. I feel that the relationship I have developed with my nurse practitioner is one of the main reasons I am currently quite in control of my condition. If every time I felt unwell I had to make a trip to hospital, a place which I hate, I would hold off from having treatment for as long as possible (this is something which happened regularly in the past before home treatment started). Funding has been cited as a reason for needing to keep my treatment “in house” by the specialist CF nurse at the RVI (who may be funded by the CF trust but im not sure?), I am not willing to compromise my treatment to give in to government bureaucracy though. Recently there has been some talk of the RVI getting funding for some kind of replacement for my nurse practitioner. On further investigation I have found that they would be permanently based at the RVI and would not offer any of the flexibility patients like myself have. Through all of this, I am often reminded of government buzzwords about patient choice. If this really did exist, instead of the hospital taking the “this is how we do it” approach, they would be taking the “what do you consider is the best approach” route.

At Sunderland:
We don't “do” Newcastle patients.
The management at Sunderland hate me, and other legacy CF patients. Being registered at Newcastle they receive no direct funding for providing me with the service of a home visit nurse practitioner or strong anti-biotic drugs. I don't consider myself a patient of the RVI, I consider myself a patient of the NHS. National insurance goes into the NHS, treatment comes out of it, from where it is required. There has been an on-going battle between the nurse practitioners who treat people like me, and are happy to treat people like me knowing they have a very positive impact on my quality of life, and there managers back home. This constant uncertainty is extremely unsettling, and knowing you are no more than a number to the people who run the hospital is very demoralising.

We don't “do” drugs, even when doctor thinks you need them.
Over the last year and a half, a new treatment was offered to me. A drug called Meropenum which costs more, is stronger and has much worse side-effects than my normal serious chest infection drugs. On the plus side, after a good few weeks recovery it leaves me feeling amazing. We've decided after quite a bit of discussion that it would probably be a good idea at present for me to have Meropenum once a year (probably around September to get me through the start of Winter) and continue with Ceftazadime for the rest of the year. Sunderland however, has a very specific policy on prescribing Meropenum. Unless you can produce a sputum or cough swap sample with the psuedemonus bacteria on, they will not prescribe the drug to you. This is a big problem for me, I almost never cough sputum up, and cough swabs don't really get bugs from deep down in the chest, so even though I know I need treatment and am ill, and my nurse/specialist know I need injections, the hospital refuse to give it to me. This brings us back to Newcastle.

At Newcastle:
We don't “do” unmade medication.
From the age of 7, right up to 18 we have prepared my own antibiotics. Drugs come in a pure/non made-up state which we mix and prepare up into syringes ready to be injected. We are competent and happy to do this, it gives us reassurance that the right drugs have gone into the syringe, and gives me direct control of the speed I put the drugs in at. Control is good. At Newcastle, they “don't do it that way” and have “never done it that way”, they employ a group of pharmacists who do nothing but make up drugs like mine all day into things called infusion bags. The bag attaches to the port and the drug drips in very slowly, taking about 20 minutes for each injection, doing it myself it takes less than 20 minutes for a whole set of injections. I could see no good reason for me to change to this system, it usually takes a bit of fighting for but I do get pure drugs from Newcastle eventually, even though they keep trying to persuade me otherwise. Newcastle as it happens, doesnt have a Meropenum policy, and if your doctor says you need it, you get it

I have heard through the grapevine of a service which another area offers its patients, the perfect service. Instead of giving you pre-made up infusion bags, they make your drugs up for you into the syringes that we do at home and you just get them and inject them. If one area can do this, all areas should be able to do this.

We don't “do” efficiency
We often get things we don't need or want when getting drugs provided from the RVI. The last time I got my drugs from there we were given a huge box of Sodium Chloride. The SC were contained in weird soft plastic bags which were actually designed to be used on a drip (we just get viles from Sunderland), they also contained 300ml when I only needed 100ml per session so I was wasting 66% of the bag every use. To get the stuff out, you had to push a needle through a small plastic tube at the bottom of the bag, except they never just went in, thus lots of burst bags and stabbed fingers. We only used half the box, they are a health hazard and a waste of money, why one hospital can provide standard viles and another cant is beyond me.

The Solutions:

A CF clinic at Sunderland General would be a good solution. Its much easier for me to get too, and would mean a much smoother transition from child to adult clinic, who knows if this will happen though.

Clinics need to be cut down to an individual level, I accept the need for them for monitoring purposes but I don't feel they are good places to be especially related to cross-infection. In all other walks of life people with CF are told to stay as far away from each other as possible.

Drug supply needs to be location independent. If it is better for me to obtain drugs from a certain hospital, even if I don't clinic there, I should be able to, and they should receive payment for drugs as appropriate.

The system of nurse practitioners should be at least kept, at best extended. My nurse practitioner is probably the only other person involved in my care apart from my GP who I really trust with my health.

Just give me what I need. I can tell the hospital exactly how much of each drug and flush I need for each dose, so why give me 3 times the amount I need? When things like this happen, and then other care is refused due to finance costs it makes your blood boil.

Intro 1.5

University

Due to coming in very late via the clearing system, I managed to miss freshers week. Im not sure if this impacted on my access to certain services or not but its possible it did. I was told during my application interview that the University had a dedicated Disability Advisor who I should see as soon as possible.

The meeting I had was pretty uneventful, the main question from the disability advisor was

"what do you need?". Unfortunately at that time I had no way to answer this question, at 18 I really did not know myself well enough to understand what I would need to get me through the next 3, I mean 6, years. Having no experience of how University worked couldn'tnt predict what services I may or may not need, how much time off I would need to take or many other potential hurdles in my way. I really got nothing from this meeting, apart from copies of medical reports being sent to my Course Leader and a "good luck" on the way out.

I spent most of the first semester getting up at 5:30am trying to fit in all my CF treatments before I left to get the bus to get to Uni by 9:00am. At that time doing my full treatments took about 2 hours, and as taught in the pediatric clinic, doing the full treatment, in the morning, is the most important thing ever. Im sure they teach the kids this because its the only way to get them to do any treatments at all, but in adult life this type of thing is just unrealistic. The next semester I learnt to tailor my treatments to my timetable, priority'stise work over basic treatments I could live without for short periods of time. Luckily I had a good healthy year in my first year at University so I did not really need to call upon the help of anyone, although the first year is relatively easy anyway compared to other years.

Second year things were harder. I have injections approximately every 3 months, although it actually varies between 2 and 4 months. About a month before they start I can feel my system starting to go down hill, trouble getting to sleep, but sleeping later, lack of concentration, general lethargy, and up to a month after treatment these symptoms gradually reduce till I get back to "normal". This is without the colds and flu's which themselves often last up to a month. This year a new Disability Advisor turned up at the University. I went for a meeting with her at the start of the year and she introduced me to some things which as a disabled student I would be entitled to. This included help with travel costs, food, income support and work at home equipment. Im not going to go into the process of getting these, which is separateperate post on Disabled Students Allowance, but some of the help I could get turned out to have a big impact on my quality of life. I was quite annoyed though, because they were all available the year before, noone had informed me any of them existed though, surely this should have been what the disability advisor was there for? Apart from the external help available talk, things continued as in the first year with information being passed on to my Course Leader (who already had it anyway) and nothing else. For some reason I did not feel like I could ask for more information or extra help then, must be a growing up thing. I did manage to get through this year, with a lot of work extensions but it left me extremely run down at the end of it.

Year 3 (1). Such a challenging year, the course workload doubled immediately and so did the importance of each piece of work. I never really recovered from getting so run down in year 2, I struggled through the first semester of work but only managed to get a couple of pieces of work done, even with extensions. In the end, I made the decision which I hated myself for doing at the time, quit the year. After talking with my course leader I could either take a month out then do re-sits, or leave and come back next year to start again.couldn'touldnt recover over the summer hols, I defincouldn'touldnt recover in a month, especially with it being winter. After a few months of being dropped out, and gradually feeling like I was recovering I felt I could try and get all my health issues sorted out as much as possible. Id been suffering with a hernia for a few years which id put off doing anything about, but which suddenly got a lot worse after I dropped out. I had the op at the end of July, resulting in a 5 inch cut and VERY swollen balls, I could hardly walk for a month. The op took way more out of me than I expected, for about 3 weeks after I had it I slept most of the day, and all night.

Year 3 (2). September came through and compared to how I had been, I was feeling great, so I decided against my friends and families wishes to return to Uni. Such a bad bad decisihindsightesight, because after a month I was completely dead agahadn't hadnt given myself enough time to recover at all and ended up in just as bad a situation as I was when I left. Same solution, lots of work extensions negotiated after id been ill and me rushing work off as soon as my injections had finished. It came to a head at the end of the second semester when I was supposed to be graduating. Id been ill in one form or another all year, which had resulted in me not being able to complete my dissertation at the same time as trying to catch up with normal unit work. I had a big meeting with my Course Leader where a few options were presented, and it was decided I would try and pass this year, and come out with a non-honours degree, and the option would be left open for me to return when I felt I had fully recovered to do something called a top-up course, where you can gain a full honours degree with dissertation. I somehow did manage to pass my exams and coursework and came out a stadegreeegrree, it was very depressing and I never really felt like my non-honours degree meant anything too me.

A year passed and I wanted to return straight away, at the start of September I got extremely ill and had a 5stintstrint of injections with a few weeks off inbetween. 3 days after they finished I had a flu jab. The mixture of extremely strong drugs, run down system and flu jab had one bad reaction and I was laid flat right up to Christmas, so no return to Uni for me. Over the next 6 months I really pulled my life together, I seemed to finally work out ways to get control of my condition, felt completely different mentally and I knew I was ready to return to Uni, which is where I am now.

This has probably been my best semester yet (apart from the trip to Spain) in personal terms. A number of extra hurdles have definitely appeared, which ill go through in some further posts.

Intro 1.4

School and 6th Form

I went to St Robert of Newminster Secondary School, and also went to 6th form at the same place. Although academically I don't think it can be faulted, it was an excellent school to learn in, looking back now I can see that the way I was dealt with medically was far from perfect, especially when set against the experience I now have at University.

I don't remember any meetings with any school staff happening before I started, to work out exactly how my CF was going to affect my studies, what I would be expected to do, and what the school would do to help me through my life over the next 7 years there. As far as I could tell, at no point during my whole time at school was a specific person appointed and publicised as the main point of contact for any pupils with disabilities, to either be used to work through a specific problem which may have arisen from the disability, or just for general advise. On initially entering school the main problem I encountered was drugs. I have to take a number of drugs during the day, ranging from vitamins and antibiotics, to enzymes which I have to take every time I eat anything from a kit-kat to a full meal. At primary school, my parents simply went in and spoke to the head teacher, who passed the message down about how my treatment works. In infants drugs were provided by a "helper", but after that I was given progressive control over when and what to take my medicines with, so that after a few years I had full control of my drug related treatment, with no input from any teachers or staff. In secondary school I was immediately told that they had a "medicine policy", which stated that all medicine had to be handed in at reception every day, and would be handed over to students to be taken when needed in front of a member of staff. For me this would have meant, every time I ate a bar of chocolate (which was quite regularly, as prescribed by my CF specialist to keep the weight on) I would have to leave class, or my group of friends and traipse down to reception to take 2 tablets, then eat, then return to what I was doing. At lunch time, instead of running down to the lunch hall with my friends, they expected me to first visit them to obtain the drugs, then go back to the lunch queue. I flat out refused to cooperate with this, with the support of my parents, and did end up keeping control of my own medication. This didn't stop almost daily requests by members of staff for me to stop taking drugs in the corridors, to take the medicine to reception for them to hold on to them. Most of these requests came from dinner ladies who even after me explaining multiple times why I needed the drugs and why I wasn't going to hand them in, refused to give in on the issue.

In reality, I managed to get through school one way or another without much direct support from them, sixth form turned out different though. A few years before I entered 6th form, I had a run-in with the head of it. I say run it, but he essentially blamed me for something I didn't do, tried to make me admit I had done what I didn't do, then gave in with the remark “watch out, ill never forget you”. Roll on 6th form time and the first year and a half go relatively well, nothing had really changed in terms of support from the school although I was now able to do what I liked with my own medicine. Half way through the second year I fell ill, really ill. I disappeared for around 4 months, occasionally turning up to get work or go to a lesson but essentially resting at home as much as possible. I got real depressed at this time, I suddenly realised how much CF could affect my life and it took me a good while to come to terms with this. I did struggle on, doing as much work as possible, although catching up on work essentially ate up all my revision time which meant I went into all my exams blind. During this time I received virtually no contact from my 6th form, and not a lot of acknowledgement from the head that they would do anything to help me get through this period. I did go to see the head of 6th form before I took my exams, to ask if it would be possible to re-take the year. He said no, my attendance record was too bad (no shit, I consider not having the energy to walk 10 metres a fairly good excuse) and he essentially didn't like me so I could fuck off. One teacher was excellent though, he managed to organise work extensions, had a sympathetic ear and even wrote a letter to the exam board explaining my position. I think I owe it to him for really getting me into University.

Exams came and I attempted them. God knows how but I actually passed them, not amazing results but enough for me to think about going to University. Based on my first year at 6th forms exams I managed to get accepted to all 3 Universities of my choice but turned them all down expecting to fail all my A-levels. I ended up getting an interview at Northumbria via the clearing process. It was with a nice bearded lecturer who talked to me at length about what had happened during my a-levels and what I wanted to from University. He accepted my application then and there and told me they would do everything possible to help me get through University with my CF. Things looked so much different.

Intro 1.3

Things are now somewhat complicated. As with a number of other patients who started at the Sunderland General pediatric unit and moved to the RVI adult clinic I still have a number of treatment ties with Sunderland, primarily by choice, because they offer a better "service" than the RVI. Since leaving Sunderland it has panned out so: I go to the RVI for my general checkups, every 2 months or so depending on how ill I am at the time. They do breathing tests, x-rays, blood tests, weight me, do a general "how are you" session, listen to my chest, and on the occasions a Physiotherapist or Dietitian is there I will have a quick chat with them. The RVI also supplies me with drugs, sometimes, depending on the type of drugs I feel I need, and whether my other sources of medical treatment will agree to get me them. After lots of discussion between GP and Sunderland General, it was eventually decided that my GP would provide all my nebulised medicine, so I now get all my everyday drugs from the GP. My PORT-A-CATH needs to be flushed out to stop it clotting once a month. Due to legacy ties with Sunderland General this is done by home visit from a Nurse Practitioner. Initially my contact with my Nurse Practitioner was purely for port maintanence, but because of regular contact at home, and progressive extra training on my Nurse Practitioners side, they are now my main point of contact with the NHS for all my CF treatment, and occasionally for non-CF treatment. I also get sharps boxes from my GP surgery, sometimes, but that is a whole seperate issue.

I am not exactly happy with the situation, but I am much less happy with the other options I am given, and the way certain bodies I deal with try to push me into what hospital protocol or NHS Trusts want, or what makes things easiest for themselves.

When I have finished my intro posts, I will probably do a few more NHS ones.

Intro 1.2

I went on for a number of years having injections of Ceftazidime and Gentamicin put in via temporary cannulas, 8 years in fact. Unfortunately your lucky to get 3 days out of the average blue cannula, and a day out of the easier to put in pink ones, which meant many nights sitting in casualty waiting for a doctor or nurse to try and find a working vein, and repeatedly failing. After 8 years of this, my veins were somewhat dead. So one day at CF clinic the problem was brought up, and a new/wonderful invention called a P.A.S. PORT was suggested. A small piece of metal in my forearm linked to a cable going into my chest, a semi-permanent injection device.

During my time at Sunderland General's Pediatric CF clinic I was fortunate enough to be under the thumb of the rather excellent, but slightly eccentric Dr Lowry who attempted to describe, without actually showing me the device, or a photo, what the P.A.S. PORT would look like. I ended up thinking that I would have a small slab of metal below, and above my skin with a small circle of silicon in the middle to put the needle in. The idea of looking like a cyborg really didn't appeal to me and I was about ready to just stick with cannulas for the rest of my life when I was sent off to see another CFer who had already had one done, which changed my mind completely.

The port was put in, I ate some toast, then went home, all within a few hours, impressive service. Everything injection related went off without problem for years afterwards. When I was about 16 I was put on the Dnase trial, assessed and allowed to keep taking it. A problem occurred when because I was no longer involved in a trial, and the hospital felt it no longer had to supply the drug, and my GP surgery should take over. My GP refused and after a period of arguing behind the scenes between Sunderland General and my GP, the hospital agreed to keep providing me with the treatment. This meant occasional trips to the inpatient pharmacy to pick things up, but in reality not a great problem.

After many good years at the Sunderland Pediatric CF clinic I began to realize my needs were changing, and I was no longer happy to be part of a "doctor says, patient does" regime which exists in pediatrics...for very good reason, and I wanted to at least start to take control of my own condition. By the time I actually made the decision to change, I was 18 and had just started University. Sunderland General had no, and still does not have an adult CF clinic. I found that this made the change from pediatric to adult clinic much more traumatic and inconvenient than it would have been if done internally. Having no inbetween care, in which a gradual transition could be made from pediatric to adult, over a number of years, in the same building and environment was very unsettling. This appeared to be quite a common experience of other CFers at the time, with a number of them either choosing not to leave the pediatric clinic at all, or actually returning from the Newcastle RVI clinic because they were not ready for the change. The change did happen for me though, to some extent anyway. Im fighting to control that change and point it in a direction I consider positive for my own circumstances.

PS. Im new to this blogging thing, or at least serious blogging thing. Ive used livejournal in the past and I know there were stand-alone clients you could use to update your blog. Do any of these also exist for blogger/blogspot? The client on the website seems really buggy.

Intro 1.1

I feel like I should write a few introductory and explanatory posts to describe how I got to the current state of affairs. My purpose for writing this blog is about 90% for myself, to get a way to channel the frustrations I seem to go through out of my system, but the rest is because, I believe in transparency in public services and businesses and feel like this general information should be out in the public.

In the beginning. I had a relatively uneventful time right up to starting Secondary School, apart from not being diagnosed with Cystic Fibrosis until I was 2 or 3. Repeated visits by my parents to the doctors were fobbed off with multiple "he'll grow out of it's" until they finally forced the issue and got me a sweat test. When I was 7 I caught a bacterial infection called pseudamonus for the first time. This is something a large proportion of CF patients will get over there lifetime and would be fatal if left untreated. This being my first, we had no idea what was actually wrong with me, repeated visits to the GP I was then with left us with more "he'll grow out of it's" until I got to the point of not being able to walk 10 metres without stopping for a break, at 7 this was a pretty scary thing. We eventually chose to go directly to the CF clinic at Sunderland General, who had me in hospital and having treatment within a day.

This experience taught me and my parents a few things, the biggest one being that, unlike we had always been told, our GP should not be the first point of contact for CF matters. Shortly after this we left this GP and practise and moved over to another health centre in the same town, as recommended by my CF Consultant. At this point my everyday drugs were obtained from my GP surgery, and my occasional use strong injected anti-biotics from Sunderland General.