Martyn Hooper

The Documentary that has been nine months in the making will be premiered on the same day of the Symposium.

The Date is Thursday June 9th.  I am busy trying to secure a grant that will cover the cost of hosting the event (around £4,500) and the venue will be determined by whether or not the grant application is successful.  If it is successful the event will be held in Wales, if not then we will be seeking sponsorship to host the event in London.

The Documentary – Living In The Fog - will be shown at the event and so the venue will probably be a cinema.

Speakers who are confirmed attendees at the Symposium are:

Professor David Smith – Professor of Ageing Medicine, University of Oxford.

Professor Helga Refsum – Professor of Nutrition, University of Oslo, Visiting Professor of Nutrition, University of Oxford.

Dr. Edward Valente – Marketing Manager, Axis-Shield Diagnostics.

Dr. Fiona Porter-Smith – a General Practitioner and member of the society who devised and analysed our survey.  I may have to present these findings as Fiona is due to give birth just before the event!

I am still waiting to hear back from two other speakers who will  almost certainly be present.

The idea behind the symposium is to bring together doctors who are aware of the serious issues relating to the diagnosis and treatment of Pernicious Anaemia in particular and B12 Deficiency in general.  We, as a society, are aware of these issues, as are some notable doctors.  Yet nowhere is this information being widely disseminated throughout the medical profession.  The hardest bit will be getting doctors who are, as yet, completely unaware of these serious issues to attend.

If you are considering attending the event please be aware that the content of the papers (with the exception of me or Fiona’s) will be highly technical and based on complex science.  The Documentary will be easy to understand though.  Please call the office if you are interested in attending.

More of this as it develops…..

A lady telephoned the office yesterday asking for some advice.  The call was transferred to me.  I was aware that doctors are reluctant to prescribe B12 for whatever reason, but this latest call drove home to me the magnitude of the problem that we face.  The conversation went like this:

Me – “How can I help”

Caller “I’d like some advice please”

“Certainly, but I have to advise you that I am not medically qualified and your doctor is the best person to advise you of any medical matter”

“That’s the problem”

“Okay – go ahead”

“Well, my doctor has run all kinds of antibody tests on me and I have tested positive for Intrisic Factor Antibody”

“So you have Pernicious Anaemia!”

“Well, I have all of the symptoms on your checklist apart from one”

“Then you have Pernicious Anaemia”

“But my doctor won’t diagnose me with having it – even though My Great Grandmother died from it”

“Why won’t your doctor diagnose Pernicious Anaemia?”

“Because she doesn’t trust the test and thinks it might be a mistake”

“So what has she diagnosed”

“Depression”

“Let me get this right – you have nearly all of the symptoms, you have a family history and you tested positive for the Intrinsic Factor Antibody?”

“Yes – that’s correct”

“And your doctor thinks you are depressed?”

“Yes – she wanted to prescribe me anti-depressants but I refused.  I’m not depressed, but I have no energy, can’t think clearly, have memory problems and have pins and needles and numbness in my legs and feet – I don’t know what to do.”

“What is your doctor going to do next?”

“Order the Intrinsic Factor Antibody test again to rule out Pernicious Anaemia.”

“That test is around 40% accurate and so there is the chance that the test will come back negative”

“I know – what can I do?”

“The only thing I can advise you to do is ask to be seen by another doctor”

“I thought that was what you would advise”

I ended the call and shook my head.  This is, after all, a harmless vitamin.

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

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.

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?

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)

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.

Me and My PA

My story starts in September 2001.  The previous year I had turned forty and I was in my eighteenth year of lecturing in Further Education.  I had a very active lifestyle, running a very popular National Diploma course for full-time students, Hill Walking and Leading Walking Expeditions, playing drums in a rock band, teaching drum-kit to exam standards, playing tennis. I was always on the go.  Then, in or around late 2001 I started to feel tired for the first time in my life.  I knew what it was like to be tired after three days of hill walking – and that was a nice tired.  But this tiredness was more than physical exhaustion.  It was an insidious tiredness that never really went away.  I was even tired after a good night’s sleep and this was, of course, due to me reaching middle-age that I had read about.  There were other little indicators that middle-age had arrived.  I started to forget things, even found concentrating to be more and more difficult and began to experience breathlessness more and more.  ‘This was it’, I thought; ‘it’s all downhill from here’.

I still kept up my hectic lifestyle and one evening I was playing in a band at a local gig.  At the end of the set, and in true rock-star fashion, I jumped off the stage onto the dance-floor below.  I landed in a pool of what was probably beer and found myself suddenly horizontal about five feet above the floor before suddenly falling hard on my back.  It was quite a spectacular piece of Cabaret for a finale and the crowd were genuinely pleased to see me get up and laugh off the whole event.  There was no damage done.

A few days later my legs went numb overnight.  I awoke one morning and realised that I had no feeling from my toes up to the middle of my thighs.  And my feet and knees seemed to be bloated.  ‘Probably due to the fall’ I thought, ‘they’ll return to normal soon’.

They didn’t.  After a month or six weeks of having no sensation or feeling in my legs and feet I booked my first appointment with a doctor.  He didn’t seem particularly concerned explaining that it was probably due to the fall but that it was best to let nature do the healing.  I agreed and, re-assured that everything would soon be back to normal, resumed my busy life.

The tiredness became increasingly difficult to deal with.  Even as a child I had managed on the minimum amount of sleep and I remember being told by my friends mothers to not knock their doors before 9 a.m. which meant that for three hours in the mornings I had to occupy myself alone.  I can remember thinking it quite unremarkable that Mrs. Thatcher needed just four hours sleep per night.  And here I was, having to force myself awake every morning.  The breathlessness was bizarre as it seemed to require me to yawn and yawn and yawn as well as take deep breaths one after another.  Then my concentration took a dive and I started to experience ‘fogs’.  These are quite difficult to explain to somebody who hasn’t experienced them but it is as if there is a ‘fog’ that prevents you from understanding things clearly; it’s as if something was between you and what you were looking at or hearing or saying.  These ‘fogs’ would last a day, or two or three.  Then suddenly I would awake one morning and suddenly everything was clear again.  By January 2002 my legs had not repaired and I was now starting to stumble and had developed an ungainly gait.  This was around the time that I suddenly became aware that I could not tolerate heights and would become very unsteady on my feet when looking up.  There was obviously something wrong and one of the doctors at my local surgery sent me to a Neurosurgeon for a consultation.

“Well you had a fall, you got back up – I don’t think this is related to the fall” he said.  “I want you to have an MRI Scan to rule out a number of things”.  “What’s an M.R.I. Scan?”  I asked blankly.  He explained and I went ahead with the scan which proved that there was “nothing sinister there” – I later discovered that he thought I might have Cancer of the Spinal Cord.  Whilst all of this was going on I was still carrying out my normal hectic schedule and discovering new things wrong with me.  In Dublin with a mini-bus full of students I stopped to ask the way of two Garda who were walking away from me.  I went to run after them but discovered it was impossible.  My legs just wouldn’t go fast and I made quite a spectacle for the unsympathetic students who genuinely couldn’t see the serious side of what might be going on.  I laughed off the incident along with them but inside I knew that my condition was deteriorating.

In the spring of 2002 I started to have personality changes.  I became very irritable with students who sought help or clarification about something.  And this was the part of my job that I loved the most – helping people.  Now I would treat students as in irritant, and my mood-swings were being noticed at home where I was increasingly short with my wife.  It was around this time that I would completely forget a conversation I had had the day before, forget where I had parked my car, get confused trying to write sentences and really just wanted to crawl into a dark hole and sleep.  As I left a lecture room I couldn’t remember what I had talked about for the past hour before going into another lecture to talk about something.  I started to experience the need to cry for no apparent reason.  And I began to realise that I was depressed.  Something would have to be done but time and time again people would listen to my symptoms and laugh it off as being middle-age related.  I tried to laugh with them but was starting to get seriously worried.

I didn’t mention the severity of me trying to cope with everyday life to anyone, not even to any doctor.  I thought that the depression was my own making, and that the physical symptoms were all related to the fall.  The tiredness, or rather the chronic fatigue, was all due to middle-age – a fact confirmed by others that I talked to.

By mid-May I was close to collapse and, when walking to my local surgery for yet another doctor’s appointment, stumbled, fell in the middle of the road and couldn’t get up.  I know how it feels like to be ridiculed and scorned at for being drunk in the middle of the day because as I tried to get up onlookers thought that I was completely drunk.  A Police officer eventually helped me to my feet and I convinced him that I was not drunk.  “What’s wrong with you?” he asked sympathetically.  “I don’t know” I replied.

The police officers kindly took me home in their car – the first and last time I had ever been in a police car.   I was confused, frustrated, angry and very, very, very tired.  After an hour or so I telephoned my sister. My sister is a Sister in that she is a nursing Sister in the community – she is what used to be called a District Nurse.  She immediately drove to my house where I was stumbling around holding onto anything that was solid to help me walk. She could see that I was in some distress.  My main concern was that I had not attended the appointment with the doctor.  “This is ridiculous”, she commented, “I’m taking blood so that we can get to the bottom of this”.  At least that’s what I seem to remember.  This was not a normal fog that I was in – this was a real pea-souper with no sign of it lifting.  I was the most needle-phobic man on the planet.  I would wince at even the thought of a needle but now I didn’t care what she did and where she stuck the needle – I was just not interested.

I can’t remember much after she took blood, I cannot remember what conversation I had with my wife that evening, and I can’t remember how I got to work the next day. But I do know that I was in a classroom the next day because someone from Personnel popped her head around the door and asked me if she could have a word.  I stepped out of the classroom and she told me that my Doctor had been on the ‘phone and that I was to telephone him immediately.  They had tried to telephone me at home but they had my old number.  I went to go back into the class fully intending to talk what must have been drivel until the end of the lesson.  She grabbed my arm, “I think you ought to telephone him now, he seemed quite concerned”.  I went into my work-room.  There was nobody else in there as the all the other staff were teaching.  I telephoned the surgery and asked to be put through to this particular doctor.

“Are you ok”? asked the doctor, who was Irish.  “Yeah” I lied.  “You need to come straight away to the surgery, right now, we have a diagnosis”.

“What is it?”

“I’ll explain when you get here – come straight to my room”.

“I’ll come now.  How long will I be, I have a class at 12″?

“You’ll not be doing any teaching for a while” he replied.  At least a week, maybe longer”

I put the telephone down and went to see my Head of School to explain, or rather not explain, what had happened.  She re-assured me that there was no problem but I could already see that I was causing problems.  I stumbled to the doctors making use of any standing wall to steady myself.  To onlookers I appeared drunk – very drunk.  I went straight to the doctor’s room as instructed.  I can’t remember how I felt.  I must have been relieved that at last I had a diagnosis.  And I must have been worried what that diagnosis would be.  But everything was just too much to think about and I was desperate for any help that I could receive.  At the back of my mind must have been the knowledge that this was the only doctor in the practice that I hadn’t seen before.

“We think it’s Sub-Acute Combined Degeneration of the Cord Secondary to Pernicious Anaemia” he said.

I was stunned.

“Can you cure it?”

I remember this bit.  I was looking straight into the doctor’s face.  He looked away.  He looked down and to his right.  “We can sort you out.  We’ll sort you out.  It’ll all be sorted”

“What will happen?”

“You’ll have to go into hospital.  You’ll have to have blood transfusions.  We’ll get you in today”

“How long will I be in hospital?”

“We don’t know”

“A day?  Two days?  Three?”

“We don’t know – maybe a lot longer than that”

“A week?”

“We don’t know”

“But you can cure me”

“We’ll sort you out”

“How long will it take to cure?”

“Well, you’ll be on injections for life”.

“What kind of injections?”

“Vitamin B₁₂.  You’ll need lots in the next month and then every three months for life”.

“What do I do now?”

“You go home and wait for me to telephone you.  Make sure that you give your correct number to reception and let me have it right now”

“Can you write down what my diagnosis is?”

“Sure”. He wrote down the diagnosis on a slither of paper that advertised some medicine and I stumbled out of the room.

I returned home and waited.  My sister was on her way to France and I phoned her mobile.  I told her the diagnosis.  “Oh my Gawd” was the unhelpful response.

“I have to go into hospital for transfusions” I told her.  “What am I going to do?”

“Well you just have to be brave” she replied in her best ‘pull yourself together’ tone of voice.  I am not a hospital brave; I am a hospital wimp.

I was now very, very confused, tired, exhausted, overwhelmed and unsure what I should do.  I didn’t know how to react.  My emotions were completely out of control and I struggled to be logical.  The doctor ‘phoned.  There was no need after all to go into hospital, “Just report to the Nurse in the morning for the first of your injections”.  I went to bed at three o’clock and slept solidly until eight the next day.  I tried to explain things to my wife but this was difficult.  Surely my condition couldn’t be due to a vitamin – you could buy vitamins on the high street.  This had to be more serious than a lack of a vitamin.

I had stuck the diagnosis to the fridge using a magnet.  “Why don’t you look it up” she said.  I reached for a Dictionary.  The root cause was Pernicious Anaemia – the sub-acute thing was secondary to that and so I looked up Pernicious in the dictionary.  I knew it didn’t mean something nice but when I saw that the dictionary stated it meant not only ‘ruinous’ and ‘destructive’ but, more worryingly, ‘fatal’.  I closed the dictionary.

I reported to the nurse an hour later in an even more confused state than before.  “Do many people have Pernicious Anaemia?” I asked.

“Not many young people like you, and not many males.  It’s usually elderly ladies have it”

“Do they live long”?

“Oh yes – people used to die with it but now we’ve got this”.  She held up a small little bottle with some re-assuring red liquid in it.

“Is that the B₁₂?”

“Yup”

I looked at the floor when she reached for the syringe and needle.

“Now the secret is to relax”

I couldn’t relax. I felt a dull ache as the liquid entered my right arm muscle.

“Well done” she said.

I now know that this isn’t the easiest of injections to carry out painlessly.  I have heard stories of some patients who have not driven for three months because of the pain of the injection.  But mine seemed pretty straightforward.

“There – see you tomorrow” said the nurse.

“How many do I need?”

“Ummmmm”, she consulted some form.  “Doc says every day for a week, then weekly for four weeks and then monthly for three months then once every three months for life”.

After three days of injections the pins and needles that I had experienced for a year in the tips of my fingers disappeared.  After a week the fog started to clear.  After a month I felt that I could cope with life for the first time in two years.  I felt confident that improvements would continue. After my last monthly injection I could look forward to three months of not having one. My physical problems didn’t improve and I have permanent nerve damage to my spinal cord and peripheral nerves, but mentally I became more focused and the fog lifted.

I believed I was cured.  I was wrong.  Six weeks after my last monthly injection I started to feel foggy again.  The old symptoms returned with a vengeance.  I would talk mumbo-jumbo, state obvious facts that were obvious (“the Queen Mother has died” I told my wife one day.  “I hope she is dead” she replied, “they buried her nine months ago”); the forgetfulness returned, I became irritable and angry.  I suffered severe mood swings.  I couldn’t complete even the most mundane task without real effort.  I panicked. It was all going horribly wrong again.  I went back to the doctors and found the original diagnosis doctor had left the practice.

“I need another injection”

“But you don’t need one – every three months is the normal”

“Perhaps for some people but not me” I argued.

“It’s all in your head.  Would you like some anti-depressants”?

“It’s not in my head.  I’m going back to how I was”

“What if we send you to a Haematologist?”

“No problem” I said.

A few days later I was in the consulting room of a Haematologist who took blood and carried out a full physical examination.

“I need more regular injections” I pleaded, “and the doctors won’t give me more frequent jabs but I know, I really know, that I need them”

“Okay” he said.

“But why won’t they prescribe more frequent jabs?”

“Because for most people an injection every three months is fine; and the guidelines they follow state three monthly injections are the norm.  But we Haematologists know that some people need them more often.  Maybe about 18% of people with PA need more regular injections even though the amount of B₁₂ in your blood is very high.  We simply do not know what goes on at cell level so, because there is no possibility of overdosing on B₁₂ I’ll sanction an injection every month”.  I could have kissed him.

I now know that I was very lucky.  A great many sufferers of Pernicious Anaemia need more frequent injections than the usually prescribed twelve weekly regime but are unable to get them.  Many sufferers are prescribed anti-depressants for years before the patient manages to get more frequent injections – they then consign the anti-depressants to the bin.

And that is that.  I had to give up my career and take early retirement.  I now know that the fogs don’t entirely go away even with frequent injections.  I still get three or four days a month when I wouldn’t be able to tell you the day of the week it is.  And I have had to relinquish the rock ‘n’ roll lifestyle and take things easy.  Stress or heavy demands all lead to days where my quality of life is seriously affected and so now I take things easy.

When I had to finish teaching I started the Pernicious Anaemia Society (actually it was originally called the Anaemic Society), and in 2006 we were registered as a charity.  We have a very active website –

www.pernicious-anaemia-society.org and our members are from all over the world.  Our membership used to grow by around ten a day on average.  In 2009 we introduced a one-off membership fee of £20.  Our membership continues to grow by an average of two a day.  We now have over 4,000 members and in April 2009 we published a Review of the problems in the Symptoms, Diagnosis and Treatment of Pernicious Anaemia.

The aims of the society are to provide Information, Advice and Support for sufferers of Pernicious Anaemia – and our members are now helping to fund much needed research into the condition.

The most common topic for advice is about the frequency of injections.  Some lucky members are able to get ‘on-demand’ injections but others are refused.  This has led to many patients experiencing total frustration and often the relationship between the doctor and patient completely breaks down.  Members cannot understand why some sufferers are allowed a flexible treatment regime while others are not.  They have identified this issue as being the one that needs explaining.  And a Haematologist is working with the society to carry out research on why people need more injections than others.

The lack of a unified approach to the treatment of PA is not confined to the U.K.  Different countries use different ways to deliver the B12 into the blood.  In Canada it is Cyanocobalamin and not Hydroxocobalamin.  In other countries a nasal spray is used along with patches that are placed behind the ear.  Sub-lingual tablets are often used to supplement the injections but their efficacy is doubtful.

The issue of on-demand injections would be the single most important way in which a large percentage of the half a million people with Pernicious Anaemia could improve their life.  Until this happens some members who recognise they need for more frequent injections take matters into their own hands and travel across the channel to France or Spain where the little life-saving ampoules are available ‘over the counter’ at pharmacies.  They then self-inject and carry on their normal lives.

Most sufferers of P.A. also show a tendency to develop other auto-immune diseases.  Psoriasis, Hypo or Hyper-thyroidism, Diabetes, Irritable Bowel Syndrome, Rosacea, Eczema – they are all well known to sufferers of Pernicious Anaemia.  But the most common condition that members suffer from is not an auto immune disease but is surprisingly common among members – tinnitus.

The diagnosis of Pernicious Anaemia is often a long time coming as the symptoms are indicative that a change in lifestyle is all that is needed.  Tiredness is often seen as being due to hectic life and work schedules; Breathlessness by the onset of middle-age and maybe stress; Confusion and forgetfulness as being the result of the ageing process and the mood swings the result of overload of information.  When it is eventually diagnosed it would make a great deal of difference to sufferers if they could truly manage their medication needs by defining their own frequency of injections, just as some are lucky enough to be able to do now.

© MartynHooper.com, September 2010

Today marks the beginning of Dementia Awareness Week that is being organised by the Alzheimer’s Society in the U.K.

A free supplement appeared with last Sunday’s Telegraph newspaper that gave all kinds of information about Dementia.  On page 5 was a list of nine symptoms of Dementia and it was suggested that the reader should seek help  if he or she:

Struggles to remember recent events, although you can easily recall things that happened in the past

Finds it hard to follow conversations or programmes on TV

Forgets the names of friends or everyday objects

Cannot recall things he or she has heard, seen or read

Finds it difficult to make decisions

Notices that they repeats themselves or loses the thread of what they are saying

Has problems thinking and reasoning

Feels anxious, depressed or angry about their forgetfulness

Finds that other people comment on their forgetfulness.

People suffering from Pernicious Anaemia but were not diagnosed early will identify with most, if not all, of the above.  It is obviously very easy for doctors to listen to a patient who has B12 Deficiency recite all or most of the above and to diagnose Alzheimer’s disease.  It megs the question as to how many patients are being treated for Dementia when they are suffering from lack of Vitamin B12.  I suspect that this is the case with many patients who might have been wrongly diagnosis as suffering from Alzheimer’s.

Anyway – good luck to the Alzheimer’s Society with their Awareness Week.

It was all very confusing.  Her name was Victoria and she wanted to let me have a large office, in the middle of Bridgend, for free, for nothing, at no cost – completely free.

“What do you mean – how can it be for free?”

“I don’t know” replied my wife, talking as quickly as she could because I was on my mobile in the Canary Islands whilst she was at home.  “She just phoned up and asked to speak to you and told me that there was a large office that needed a tenant and that it was free”.

I didn’t believe it of course.  It was a way of getting the charity to part with money.  Landlords rent offices, they don’t give them away to charities for free.  I was annoyed.  I wanted more information and knew I would have to wait until I got home to investigate the scam.  I returned to the poolside and tried to figure out what this could all be about.

The office that the society rents costs £550 per month although we have been informed that as of this month the rent will increase to £585 per month.  Like most charities we struggle to raise funds and the financial burden of the rent was always a worry.  We need the office because, although I ran the office for two years from my converted garage, the activites that we now undertake are ten times what I used to do.  And we now have two full-time employees (well, sort of have two full-time employees – their salaries are paid for by the Welsh Assembly Government but they work for the society) and until last week when Nic left us to enter into full-time employment, four part-time volunteers.  When we are all in the little office it gets quite crowded and so we stagger the days on which volunteers come in to help.

Her name was Victoria.  I was to telephone a number she had left with my wife to find out more about the ’service we provide’.  Victoria is a solid name.  It’s a name that you can trust.  I was prepared to waste ten minutes by listening to what Victoria had to say.  Now, if she had been a Vicky I might not have ‘phoned.  Think Vicky think  Miss Pollard, Chest Rubs and colds.  I probably wouldn’t have wasted ten minutes talking to Vicky – but Victoria, think Victory, Mrs Beckham and Empire.  I made the call.

It was too good to be true.  I had listened carefully.  The office was a large one situated in the middle of Bridgend (I knew the building) and the only cost to us was one peppercorn a month.  There was obviously a catch.  I promised to call Victoria back after I had thought of it.  She wasn’t pushy.  It didn’t make sense.  When was the “Of course you will have to” bit going to be dropped into the conversation.  Victoria was obviously good at her job.  Everything was positive, there was nothing negative – yet.  I could see through her sneaky way.  I would play along with her.  I would bite when she threw me a morsel but would be prepared to be disappointed when the morsel hid a barbed hook.  She was an angler and I was a trout.  A big lazy brown trout, (on account of me having a tan after wasting two weeks of my life trying to enjoy myself on my own in a over-developed resort in Lanzarote – or Tenerife – they all melt into one).

She was being sneaky and so I would be sneaky.  The next day Kim and I went into Bridgend town centre to bank some cheques.  On an impulse (because I am like that – you never know what I will do next which to some makes me an interesting character and to others makes me unpredictable and dangerous), I turned to Kim who was walking some way behind me.  I have noticed that about her.  She always walks a few paces either in front or behind me.  Except when there is nobody about.  Then she walks by the side of me.  I think she is embarrassedto be with me and keeps enough distance between us to lead people to believe that we are not together.  Yet at the same time she manages to keep the distance just wide enough to be able to talk to me without looking at me.  I would mention it to her but nothing would come of it and I’d get one of her looks.  She’s as clever as a bunch of monkeys is that one.  A convoluted character who eats Laughing Cow cheese spread on toast and peels oranges in her pockets – enough said.  Anyway, I turned to Kim (who was walking that little bit behind me) and said “let’s go and take a look at the office we are being given for free”.  I said this in a sarcastic voice.  “Alright then” she replied and off we went to explore the catacombs of Brackla House.

It didn’t go well.  We walked into the office of a large firm of solicitors before being advised of the correct entrance.  In we went.  We went to the third floor – I was sure that was the floor that sneaky Victoria had told me the offices were located.  Up we went to the third floor.  There was one door on the right that led to offices that were obviously occupied.  To the left was another office in which a few maintenance men were carrying out work.  We went in.  It was enormous.  The office we rent in Aberkenfig is 350 sq.ft.  This was 3,500 sq.ft. at least.  I confidently informed the workmen that we were thinking of renting the office and asked if it would be ok to lookaround.  They consented and Kim and I began to imagine what we could do with such a cavernous premises.  We were dreaming of conferences and seminars that would cost nothing to host.  We could have our support group here.  We could have another conference without having to worry about the cost of hiring a room.  We were giddy on potential and drunk on possibilities.  She even walked by the side of me.  We thanked the workmen and left.

‘Please call Victoria’ said the post-it note that gave Victoria’s telephone number.  I sighed, and dialled the number.  “Hi Martyn” she said (we were on first name terms by now).  “I’m going to send you a draft contract by email.  If you wish you can show it to a solicitor but it’s so simple you probably won’t need to.  Just take your time and have a read”.  My email bleeped and I opened the attachment from Victoria.

There was obviously a catch but I couldn’t find it.  It stated quite clearly that the landlord would allow us to occupy the office for a maximum of five months three weeks and six days (so that we didn’t have any other legal bindings) and that we were to pay the landlord the sum of one peppercorn per month.  If the landlord found a tenant prepared to rent the office then we were to be given one month’s notice to quit, and if that happened within the first three months of us occupying the office then the landlord would compensate the society by paying it £1,000.  I couldn’t  find the catch.  It was all very confusing.  “time to find the landlord” I told Kim.  We set off for the new offices (well, we thought we would join in this little fantasy by calling it the new offices).  We went back to the room with the workmen.  “Is the caretaker about?” I asked.

“He is around somewhere.  He’s wearing a red top” said the man in charge.  “We are refurbishing this for Remploy” he replied when I asked him if they had much work left to do.  There – it was out of the bag.  The offices were for Remploy and not us.  Our hopes were dashed and we started down the stairs.  Then, she spotted him.  A tall figure wearing a red top.  She was after him like a rat down a drainpipe.  She was like a ferret after a rabbit.  She squealed “excuse me, are you the caretaker?”  He was on the stairs a floor below us.  Kim was leaning over the handrail.  He stopped.  Slowly he looked up.  His eyes met hers.

“No, I’m not the caretaker” said the tall man with the red top.  “I’m the owner”.

There was an uneasy silence that lasted 1.67th of a second.  Kim spoke next.  “We would like to look at some offices you have for rent” she said, wearing the same look.

“Ah, yes, of course” said the man as he turned around and started to climb the stairs towards us.  “They are on the fourth floor”.  Of course they were, Victoria had stated that in the draft contract.  Why  was I looking on the third floor?

His name was Michael and I quickly explained about Victoria and the contract.  “Oh yes” he said.  “I remember it now;  are you a registered charity?” he asked.  I replied that we were and he led the way to the fourth floor and into an office that was twice the size, no, three times the size of the office we had mistakenly thought was going to be ours.  It was and is cavernous.  We chatted and then I found out how the scheme operated, bit by bit.

It transpires that the UK government passed an act just over a year ago that overturned a ruling whereby landlords of empty premises didn’t have to pay Business Rates on the unoccupied offices.  This meant that landlords who couldn’t rent out office space were now not only denied monthly rent but had to pay the quite substantial business rates on the empty property.  However, if the office space was over a certain size – i.e. big – and the landlord allowed a charity to occupy the premises for free, they would not have to pay the many thousands of pounds in Business Rates to the local authority.  So, by allowing us to occupy the premises the landlord would save thousands and thousands of pounds and we get rent-free accommodation.  It’s a win/win situation.  Kim was now wearing her ‘I know exactly what is going on here’ look.

So there you have it.  How the society now occupies an enormous office that doubles as a conference room for free.  Michael has been incredibly helpful as has the concierge Gerald.  When we were giving the keys I opened the door to find a letter on the floor from Victoria wishing us well for the future and hoping everything turns out well for us.  It has.

Thanks to Kim for all her hard work in making the move happen and for disinfecting the kitchen (we have a large kitchen complete with all appliances as part of the deal) and for her patience and for saving the life of that woodlouse. My thanks also to Victoria and the team at Avire.  If you are looking for free office space, and you are a registered charity try giving them a call.  Tel: 01295 256338
Fax: 01295 256481          E-mail: enquiries@avire.co.uk

What an amazing turn of luck!  At the moment the society pays £550 per calendar month to rent a downstairs office that can just fit four people.  Out of the blue, last week, I had a telephone call from a firm of property managers who specialise in short term lets.  At first I didn’t take it seriously.  I mean, when somebody ‘phones you up and asks you if you would like to rent an enormous office for just £1 per month what are you going to think – it’s a scam right?  Well, Victoria went ahead and told me all about it.  She told me that since April 1st 2008 landlords had to continue paying Business Rates to local authorities on all vacant or unoccupied premises.  Before that date owners of factories and warehouses didn’t pay any Business Rates on empty premises and landlords of vacant offices only had to pay 50% of the Business Rate after a three month free period.  Now, empty offices are still liable for full Business Rates – and the bigger the office the more landlords have to pay.  So why was Victoria so eager to speak with me?  Get this.  If a landlord allows a registered charity to occupy any free office, the Business Rate is immediately reduced by 80% and there is also a further 20% reduction at the discretion of the local authority.  So, by allowing us, the society, to occupy the offices the landlord pays only 20% of the Business Rate at the most and 0% at the least.  So – we’re moving. 

Now, as it stands, the society employs two young ladies to carry out the admin – Kirsty and Kim.  Then we have Jan who volunteers two days a week (Tuesday and Wednesday), Lyn who looks after the accounts on Monday mornings.  Then there’s Sue who pops in when she has time and tidies up (moves things)  and Jane who likes to help out when she can.  So as you can imagine, the office is a busy place most days.  But even with everybody in there is still some spare room.  We have 344 sq ft. of space.  The new office we have been offered (for just £1 per month) is – wait for it – a staggering 4,700 sq ft.  That’s over thirteen and a half times bigger than what we are currently used to.  We have to give a month’s notice to our current landlord but I hope that he won’t charge us for the notice period.  This will be my first job on Monday – telling the landlord we will be leaving.

There are already plans for the new office.  Because it is so big it has three foldable room dividers that can be used to partition off whole sections.  One such section would make an ideal Seminar room, and if all the partitions are opened there is enough room for a small conference to be held.  It is certainly bigger than the room we hired for the Spring Conference held this year in Bryngarw House.  It’s an excellent resource that we will only have to pay for the cost of heating the room.  I have already instructed Kim and Kirsty to buy some thick wooly jumpers in prearation for next winter.