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Living With Cerebella Ataxia

This is My NHS Truth, Tell Others.

Dear Andy,
I find myself in the unfortunate position of having to ask your advice on how to resolve a problem at the Royal London Hospital in Whitechapel. The situation has become desperate and time sensitive so any help that you can give would be much appreciated. I have thought long and hard about whether to contact you, but I am seriously ill and desperate.
You may remember that last September you graciously agreed to be interviewed for a book I am writing about the Labour Party and we spoke at length on the phone.
I live in East Yorkshire and am Chair of Haltemprice and Howden CLP. I am 43 and married with a nine-year-old son.
I have contacted David Davis who is my MP, as well as yourself.
Since 2004 I have suffered from a chronic brain degeneration known as anti GAD associated progressive cerebella ataxia, which forced me to retire as Head of RE at Hessle High School near Hull. The symptoms include nystagmus (I am registered blind) and poor motor skills resulting in severely restricted mobility. In addition I suffer from chronic pain controlled only morphine.
Luckily Hull Royal Infirmary referred me to a wonderful neurologist Professor Gavin Giovannoni who practices at the Royal London. He has worked tirelessly to maintain my condition at a manageable level, but the drug therapy (which I only got via the direct intervention of Alan Johnson when he was your predecessor as Health Secretary)  he introduced was withdrawn by NICE in September 2010 due to safety concerns. Finally in May 2011 I began a six weekly cycle of plasma exchange, which involves a five-day stay in hospital spent on a special haemo dialysis machine to clean my blood up and manage the degeneration symptoms. This is a treatment of last resort.
All was going well until December 2011 when treatment at the Royal London’s Devonshire Acute Unit was delayed and then when finally admitted I was sent home back to Hull at the last minute. On re admittance there were issues about access to machine and I had to be fairly assertive in making sure things were sorted out. The staff are fantastic and do a marvellous job, but there appear to be issues surrounding capacity that have got worse over the last six months or so.
On February 6th I was due to begin my next cycle. It is important that it is done on time to prevent further deterioration, and the neurology department made the request. The dialysis unit was moving into new premises and we were advised it might hold things up. Yet four weeks on the issue of “capacity” has again been cited as the reason why I can’t have my treatment. The responses from the unit are nebulous and inconclusive. I cannot wait any longer, as I am now confined, and unable to stand up. My mobility is as bad as it has ever been and I am suffering with constant dizziness, nausea and various other side effects. The worry is that the longer this goes on, the less my ability to retain a reasonable quality of life. On Wednesday 29th I received a letter of admission for Sunday 4th, but on Friday it was cancelled leaving bereft and emotionally distraught, two sentiments I never thought I would have to express in an email as I am not given to hyperbole. I have never been demanding of the NHS or been one of those pressing for miracle cures based on specious drug company press releases. I just want a chance.
I have always strived to take the opportunity to put something back, especially as Prof. Giovannoni has worked so hard to turn my life around. In addition to my duties as Chair of the Labour Party in this constituency, I am a deputy director of Hull Samaritans and Head of their prison team volunteering at HMPs Everthorpe, Wolds and Hull. I have had to step down from these roles in the last month. It has sometimes been a struggle but I am determined to carry on if the treatment allows.
Whilst I appreciate there may be little that you can do, I would just like some clarity as to why this massive delay has happened, and what the prospects for future cycles may be. At least then Prof. Giovannoni and I can look for alternative locations as unfortunately Hull PCT do not possess the correct machines.
Finally I would like to say this; Every Health Professional who deals with me (and there are a few!) plus friends working in the NHS are horrified by what has happened, but NOT ONE was surprised.
I remain unashamedly a cheerleader for our Labour Party both now, and especially for what we did in Government. I have seen in real and practical terms how we changed lives through fifteen years as a teacher in and around London and at Hessle High School and then as a patient in our NHS. We continue to make a difference for the many and not the few and I am so proud of what we did, delivering the legacy of Nye Bevan and the Attlee Government in a 21st Century context.

About dermotrathbone

Writer and co author "Through Red Lenses". Activist Unite the Union, Save Our NHS Hull. Fan of Yorkshire County Cricket Club, Hull FC, Munster and Ireland Rugby. Views are mine alone and may not reflect the organisations concerned.


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