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.

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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.

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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!