Martyn Hooper

The past year has seen the society making steady progress towards its medium term aim of getting medical professionals from all over the world to call for a comprehensive Review of the way in which Pernicious Anaemia is Diagnosed and Treated.  The progress is slow, but steady.  And you have to realise that this is an enormous learning curve for everyone involved – including those members who are medical professionals themselves.

Before describing the progress that we have made, I will turn my attention to

The New Office Suite

some of the other main events and achievements that we have made as a charity.

OFFICE. The first big change that has happened over the last year was the move from a small office where we paid £580 per month in rent to an enormous new office suite that comes free of all rent – although we do have to pay for electricity.  The fact is that the landlord of the office has to pay quite considerable business rates to the local authority, even though the office is vacant.  By allowing a registered charity to occupy the space free of charge the business rate is automatically reduced by 90% with a further 10% reduction at the discretion of the local authority.  The large office space has provided us with an opportunity to host seminars and tutorials that would typically have meant us paying hundreds of pounds to hire suitably sized premises.  The office comes complete with kitchen so that catering costs can be slashed as well.
Two meetings of the south Wales support group have already taken place and more are planned in the near future.  It was hoped that the proposed Symposium that will take place on Thursday June 9th 2011 would take place in the office.  However, early idications are that the number of attendees might well exceed the 200 mark which would stretch even our available space.  More of this in the future.

VOLUNTEERS. The society is very lucky to have the support of a band of volunteers who help run the society by performing various administrative tasks, ensuring that all legal requirements of the UK Charity Commission are met, responding to requests for information, organising local support groups and a host of other duties that are carried out with enthusiasm and with a genuine desire to make the society work as well as it can.  The relationship between the society and its volunteers is mutually beneficial.  The charity receives welcome support for only the smallest outlay – we do pay travel expenses – whilst the volunteers get either valuable work experience or a pleasant environment where they can interact with others and use their experiences of past working lives to better the society.  Sometimes it’s a combination of the both.  The society has become well known for its ability to produce volunteers who have developed highly transferable and valuable skills that provide the stepping-stone into full time employment.  Indeed, in the last newsletter of the Welsh Council for Voluntary Organisations, we were singled out as being an exceptional volunteer run body.  In the last eighteen months, nine of our volunteers have found full-time work.  Our volunteer turnover may be high, but it’s for the right reasons.

EMPLOYEES. This year we have been able to offer two volunteers six months full time employment under the Welsh Assembly Government’s Future Jobs Fund.  Basically we have a Service Level Agreement with the Welsh Council for Voluntary Action whereby the WCVA provide us with the money to employ an unemployed 18-24yr old for six months.  We are responsible for all supervisory actions and for paying the employee.  Kirsty was the first employee who, following on from six months volunteering, was appointed in January of this year.  Kirsty’s contract ended in June and we were delighted when she was successful in applying for an administrative position in the private sector.  Kim was appointed in March and set to work to use her skills developed during her degree course to produce a documentary on the problems with the symptoms, diagnosis and treatment of Pernicious Anaemia.  Kim’s contract ended in September but she continues to work on the documentary on a voluntary basis.  We have a vacancy advertised for another employee but, so far, we have not found anyone suitable to fill the post.  None of our current volunteers qualifies under the Future Jobs Fund criteria.

The 2010 Spring Conference

EVENTS. The year began with another Spring Conference at Bryngarw House near Bridgend, south Wales.  The much loved Dr. Chandy gave another enthusiastic lecture on b12, along with Eddie Valente of Axis Sheild Diagnostics and Dr. Siddarth Banka who updated us on his research into the genetics of Pernicious Anaemia.  The conference allowed members to speak to other members and also to contribute to the letter that was being prepared to alert the Department of Health to the problems with the diagnosis and treatment of Pernicious Anaemia.

The planned Symposium will be the focus for the society in 2011.

Another development was the formation of local support groups. While some groups have become quite successful others are struggling to recruit members even though some of these areas have large numbers of people who are members locally.  This is an area that will continue to develop in 2011.  If anyone would like to start a support group in their area please contact the office so that we can help.

INCORPORATION. The Trustees of the society, who continue to allow me to use executive powers in all matters relating to the society for which I am extremely grateful and acknowledge their trust, have taken the decision to incorporate the society into a limited company.  This process is now underway and should be completed by early Spring.  This will mean that we will have a new charity number and the liability of all trustees will be limited to £1.  The Trustees met twice this year and continue to support all events that have taken place.

MANAGEMENT COUNCIL. The management council continues to meet every six weeks online using Skype.  The council is made up of the following personnel:  Pat Kornic – Canada, Ian McClean – U.S.A., David Connell-Smith – U.K. (and a Trustee), Alex Black – U.K. (and a Trustee), Norman Thomas – U.K. (and a Trustee), Tuula Siljander – Finland, Corrine Day – U.S.A.  Oh, and me.

NICE. The National Institute for Health and Clinical Excellence (which, in the UK is responsible for ensuring the introduction and monitoring of best practice in all things health) turned down three requests for different reviews into the efficacy of treatment, diagnosis and symptoms.  When contacted by Kim to give an interview to camera (see ‘Documentary’ below) they instead issued a statement that said that the requests were taken seriously but when they had contacted the Royal College of Pathologists, they had been told that there were “no issues relating to the diagnosis or treatment of Pernicious Anaemia”.  I have since written to the President of the Royal College who has passed my request for an interview to his colleague – the immediate past president.

THE VISITOR. I have to be careful here, because I know this person reads my blogs.  In May of this year, I received an email from the personal assistant of the Deputy Chief Medical Officer for Wales who was also the Medical Director of the NHS in Wales asking for a meeting at the society’s office.  I replied that, as the Doctor’s time was more valuable than mine that I might travel to Cardiff to meet with him at the Welsh Assembly Government Offices where he was based.  The return email stated that Dr. Hunter would prefer to come to Bridgend.  The time and date was set and, cometh the hour, into the office walked Dr. Hunter waving his arms around as he took in the vastness of the office.  I began to explain why we had such a large office and he stopped me telling me he knew the background – he had been reading my blogs……  I then asked if he wanted to know some of the problems with the diagnosis and treatment of Pernicious Anaemia but he replied that he didn’t need to be briefed as he had been reading the forum posts and was astonished that such problems existed.  He assured me that he would be bringing this to the attention of NICE in the future.  We have yet to hear from NICE but the visit proved that what we are doing, as a society, is worthwhile.  We have, at least, one seniour medical professional who is aware of our plight.  The visit was a significant milestone in the society’s history.

THE DOCUMENTARY. Where do I start?

This Could Change Everything

During the Summer one of our employees suggested that the society’s work would benefit enormously from having a documentary being made into all of the problems faced by our members.  Before June I had barely heard of High Definition, and was blissfully ignorant of the role of a Sony Z1 High Definition Video Camera  – that has now changed and for the last six months that camera has dominated my life as nothing has before.  The work that Kim has done in writing the script, arranging interviews, conducting the interviews and capturing the film (don’t ask – it’s complicated) is quite inspiring.  This has resulting in us, and other volunteers, travelling throughout the UK to interview and film senior, and world renown medical professionals and other scientists.  The result is a balanced analysis of the problems faced by our members that, in most cases, illustrates that these issues are causing unecessary suffering and urgently need to be addressed.  The film includes some very important and distinguished professionals seriously criticising the current tests used to diagnose B12 Deficiency and Pernicious Anaemia.  And these professionals have stated these criticisms to film and in quite forthright language.   However, just as important are the senior doctors, senior and internationally well-known doctors, stating that there is absolutely nothing wrong with the way in which Pernicious Anaemia and B12 Deficiency is diagnosed and treated.  The original budget for producing the film was £1,200 that was funded by a ‘restricted grant’.  In true Hollywood fashion, the film is four five times over budget but will be worth it.  We have one more interview to conduct on January 4th in north Wales and then it will be the start of the editing.  We have over thirty hours of film that has to be condensed into one hour and ten minutes. Kim is already exploring how the film will be distributed and it is hoped that it will be broadcast by one of the national broadcast channels.  It will also be available to watch on YouTube but all of this will depend on the Distribution terms and conditions.  It is hoped that it will be premiered in London, although we are still searching for a sponsor for the event that will cost around £5,000.  It will certainly be shown at the Symposium in June.

SUMMARY. This year we have concentrated our efforts on raising awareness among medical professionals of the problems we face.  In this we have had moderate success.  My thanks to all our volunteers including the Management Council and Trustees who have helped make this possible.  Next year sees the Welsh Assembly Elections which will provide an opportunity for us to be listened to by politicians.  But it will be the documentary and the symposium that will be the main events.  Finally, thank you to all our members who have continued to support the work of the society.  I wish you all a happy new year.

As you are probably aware, over the last nine months I have been concentrating on collecting evidence that will prove that there are serious issues surrounding the Diagnosis and Treatment of Pernicious Anaemia.  A quick visit to the Forum of the society’s website proves that these serious issues exist, but as medical professionals are not going to take the posts of members as hard evidence I set up an online Survey using Surveymonkey.  A GP who is a member of the society and sufferer devised the survey and is now analysing the results.  Nearly 420 members have completed it and it is revealing some frightening statistics.  Nearly 64% of Respondents reported that they waited over two years to be correctly diagnosed with 55% of members having been diagnosed with some other medical condition before finally being told they had Pernicious Anaemia.  Another source of evidence will be the documentary which will highlight the contradictions and anomalies of the diagnosis and treatment of Pernicious Anaemia – what has been captured on film is a level of misunderstanding among medical professionals that will cause many jaws to drop.

There is a question on the Survey that asks respondents to divulge what they were originally diagnosed as having if their correct diagnosis was delayed.  By far the most common misdiagnosis was ‘Depression’ but there have been some very exotic diagnoses as well.  Some of these are quite funny – or rather they would be funny if you can forget that the patient would be suffering needlessly when he or she received the wrong diagnosis.  Here are a sample of what our members were told:

“I don’t think you are mad or anything – but I think it’s your mood”

“It’s probably the menopause” – the member was only 32 .

“Pre Menstrual Tension”

“It’s all in your head” – this is a common one as well.

“Probably an alergy to the air”

“Variety of symptoms unexplained over time, except for my peripheral neuropathy which was attributed to my (perfectly good) shoes – at this point I went privately to a neurologist. Eventually B12 measured: 62!”

“Hypochondria”

“Probably a virus”

“Alcoholism”

“Psychosomatic Oral Dysesthesia”

“Emotional Problems”

” Depression, and or , being female”

“A stomach bug and later, depression”

“Fungal infection of tongue – instead of geographic tongue due to B12 def”

“Thought it could be MS, ruled that out with MRI scan -and then told me it was all in my mind!”

“Allergies, Asthma”

“Vertigo/Depression/PolyCystic Ovary Syndrome/Vitamin D Deficiency/Hypochondria (I think that’s about all of the screwy things I was told, but I might have forgotten some)”

And my own particular favourite:

“over 40 and a female – I was going to feel tried!”

As I said previously – these would be funny if they weren’t true and didn’t cause unnecessary suffering.
They keep on coming:

“The problem is that the more B12 you have the more you will want: It’s like heroin.”  Practice Manager to a patient yesterday.

“Some people get high on too much B12″ – GP to a patient a few days ago.

2/9/11.   “You’ll develop nerve problems if you have too much B12″

Take a look at this link: (you may have to copy it to a new tab)

Hydroxocobalamin

http://www.wolframalpha.com/input/?i=pernicious+anaemia+united+kingdom

Now I’m not sure how accurate those figures are, but even if they are only half accurate, no, let’s go further, if they are only 25% accurate it still means that, worldwide, around 30,000 people die each year from a disease that is, supposedly, easily diagnosed and treated.  If we apply the 25% accurate rule to the U.K. around 80 people lose their lives every year to the same easily diagnosed and treated disease.  These figures are in themselves a disgrace yet go only a little way to exposing the true horror of the end result of a mistaken diagnosis and lack of treatment.  Can you imagine what that death would have been like?  Years and years of unnecessary suffering before, most probably, a heart attack finally causes death with the patient’s heart not being able to cope with the burden of frantically pumping blood in an effort to deliver rare or non-existent oxygen to where it is desperately needed.  Can you imagine the constant confusion and inability to concentrate on anything but the most basic tasks – the fight to find the right words, the doctor telling the family that the patient’s blood is fine and that it might be that the sick person is imagining it all?  It would be a long drawn out death after years of suffering – needlessly.

When I first started a service that would provide newly diagnosed patients with a simple, easy to understand explanation of their condition, I never imagined that I would be embarking on a journey that would uncover serious shortcomings in the way in which Pernicious Anaemia is diagnosed and treated.  When the first online forum went live, the first sign-up was a lady from the U.S.A. who, like me, had developed neurological damage because she had been undiagnosed for so long.  I thought, at the time, that this was a quite amazing coincidence that the first sign-up had undergone a similar experience in getting diagnosed as I had.  My suspicions were raised when the next two sign-ups also had been through a lengthy process before being diagnosed although neither had been undiagnosed long enough to have developed neurological problems as well.

Over the years the remit of the society has changed dramatically.  When I was eventually diagnosed as having Sub-Acute Combined Degeneration of the Cord Secondary to Pernicious Anaemia I remember asking the doctor to write down what I had.  I knew that the word ‘Pernicious’ was not a pleasant adjective but when I looked it up in a dictionary at home, I was a little startled to read that it meant ‘Ruinous, Destructive, Fatal’. I was assured by the GP at a future visit (one of many until I received treatment that suited me and not a textbook) that the disease used to be fatal, but could now be easily treated.  Note the word treated and not cured.  I remember trying to find out more about the condition and so I trawled the Internet (no easy explanation there), consulted medical dictionaries (either far too vague or incredibly complicated) and asked anyone who might know about the disease including Biology Lecturers in the college I was teaching at – very superficial explanations there.  And so my research proved futile and, when I had to take early retirement, I decided to dedicate some of my, what had become considerable free time to providing other sufferers with an easy to understand explanation.  I still have the original down-loadable information leaflet which is basic but easy to understand.  It was written at a time when I was still unaware of the enormity of the problems with the diagnosis and treatment of the condition.

The forum was proving to be incredibly popular and demonstrated quite clearly that there were serious issues relating to the Diagnosis and Treatment of the condition was now unquestionable – and it was a world-wide phenomena.  When visitor numbers to the forum, and the content of the forum postings  pointed to the need for a more robust and substantial society that could act as the voice of sufferers of Pernicious Anaemia I decided to form a society that would be a bona fide charity.    To do this I needed volunteers who would become Trustees of the society and so I posted a request that anyone who would be interested in taking the society forward to contact me.  Six members of the forum volunteered and we had our first meeting in Birmingham in early 2006.  This was the first time that I had spoken in person to other sufferers of PA and it was such a relief to know that what I had and was experiencing other people had and were going through the same problems.  By August 2006 the Pernicious Anaemia Society had been entered on the register of the UK’s Charity Commission with the registration number 1115195.

The remit of the new charity was quite simply to articulate the problems with the diagnosis and treatment of Pernicious Anaemia to the relevant medical and political authorities.  The charity’s remit had now changed from simply providing an easy to understand explanation of the illness to fellow sufferers to informing those who were able to bring about change about the problems associated with the condition.  By now I was fully confident that the decades of misdiagnosis and inadequate treatment would soon be ended as all that needed to be done was to bring these problems to the attention of medical professionals and politicians responsible for health.  The idea was that once the way in which Pernicious Anaemia was diagnosed and treated was changed in the UK, that would have a domino effect in all the other countries where the society had members.  I was convinced that, now we were a charity, those responsible for health-care in the U.K. would listen to our concerns and act immediately to rectify the situation.  With hindsight I was hopelessly naive.

Last year (2009) the society concentrated on lobbying politicians to commission a review of the way in which Pernicious Anaemia is diagnosed and treated.  We had moderate success in collecting 88 signatures to an Early Day Motion that was tabled in the House of Commons.  88 signatures was quite an achievement but it all came to nothing.  Madeleine Moon M.P. (the M.P. for Bridgend where the society is based) secured an adjournment debate where the only other person in the chamber was Ann Keen, the minister for health.  The reply from the minister was obviously written by a civil servant as were the replies that I received in response to letters written to Ann Keen and the then Secretary of State for Health.  It then dawned on me that even if the Minister asked for advice on this matter then the medically trained civil servants responsible for advising ministers were genuinely unaware that there are serious problems with the way in which Pernicious Anaemia is diagnosed and treated.  This year I have concentrated on compiling evidence to support the society’s claims.  This evidence is in the form of a documentary and survey.  The results of both the documentary and the survey provide hard evidence that there are problems and are quite truly remarkable.

People still die from Pernicious Anaemia – nearly sixty years after B12 was made available as a treatment (though not a cure) for Pernicious Anaemia.   It was reported in the New York Times a few years back that a lady who had been a key member of the New York  Opera wardrobe department (she was in charge of wigs) had died at her home in Scotland where she had returned to retire.  I wrote to the Minister for Health for Scotland asking for more information.  I received a reply that she couldn’t provide me with any more information “owing to the Freedom of Information Act”.

Ends

The society will be hosting a Symposium that will bring together medical professionals and academics to discuss the problems associated with the Diagnosis and Treatment of Pernicious Anaemia and B12 Deficiency.  I have already heard from three academic medical professionals who have agreed that there is a desperate need for medical professionals to talk to each other and disseminate their findings.  More of this soon.