The Heavy Burden by Honore Daumier

It is now possible for members of the PA Society to pre-order copies of my book ‘Pernicious Anaemia – The Forgotten Disease: The Causes and Consequeces of B12 Deficiency’.  The book is scheduled for release during the latter half of June and will retail at £14.99.  By pre-ordering you will get a 30% reduction so the pre-order editions will cost £9.99.  Pre-order by contacting orders@combook.co.uk or by telephoning 44 (0) 1892 837171  Fax: 44 (0) 1892 837272
You will need to inform them that you are a member of the society.

Bethan is eighty three years old.  When she was forty men were landed on the moon for the first time.  Bethan was not really concerned or excited by the moon landing because she had more important things on her mind.  She was having serious problems with her stomach and underwent stomach surgery that meant large parts of her small intestine were removed.  The surgeon who removed her body parts was a Professor at the Bristol Royal Infirmary.  He was a good man and told Bethan that she would have to have replacement B₁₂ injections every month for life.  The reason that Bethan had the operation to remove a large part of her stomach was because the digestive tract kept getting blocked, “part of it was too narrow” she told me yesterday, “the lifetime injections were a small price to pay for the relief I felt after the operation” she said.

Bethan is a frail 83year old.  She describes herself as “having as much meat as a coat hanger”.  It’s hard to disagree with her self-description.  Bethan doesn’t have Pernicious Anaemia.  Nor did she used to have Vitamin B₁₂ Deficiency because of the monthly replacement therapy injections that she had received for the over thirty years.  She is, however, a member of the Pernicious Anaemia Society.  Bethan joined around three years ago and, after paying her lifetime membership telephoned me.  She was lucid, was able to express herself clearly using complex phrases and words.  She was also rightly worried.

“They’ve stopped my monthly injections” she told me – ‘They’ being her doctors.  I asked why her monthly injections had been stopped.

“They say I can only have them every three months now.  My old doctor has retired and the new one says I can’t have them more than every three months”.  It seemed a cruel thing to do to an eighty year old who had lived a good life, had worked all her life, paid her taxes and was an active member of society – but it wasn’t the first time I had come across a case where elderly patients were having their treatment altered or stopped altogether.  There was nothing I could do other than ask her to appeal to her doctor’s reason.

Just over a year ago Bethan called me again.  “They’ve stopped them altogether now” she told me.  Her voice was trembling and shaking.  My heart sank as it always does when I hear of treatment being stopped – almost always the patient is elderly.

Bethan has no family alive.  Two months ago I had a call from Bethan’s friend.  “She’s been sectioned under the Mental Health Act” she told me.

“Why”.

“She’s been complaining about her neighbours and her doctor said she is imagining things”.

A few days later Bethan telephoned the office from the inside of a secure Psychiatric Unit.  It was a heart-breaking call and I felt next to useless.

I started to research the links between B₁₂ Deficiency and Psychosis.  There is a very strong association between B₁₂ Deficiency and all manner of mental health problems and there have been many papers published in respectable journals by highly respected clinicians.

Early in March Bethan telephoned the office.  She was reasonable, calm and lucid.  She told me that she was going to appeal against being detained and asked if I might be able to write a letter to the appeal tribunal.  I promised that I would attend in person.  The appeal took place last week and I had been in email correspondence with her solicitor who arranged to meet me for forty-five minutes before the start of the appeal.  I told him of the link between B₁₂ and mental health issues and he then introduced me to Bethan.
Bethan is a very frail 83 year old.  She has Osteoporosis and various other ailments.  When I entered her room I immediately became aware that there was nothing personal there.  There were no flowers, no get-well cards.  There was nothing personal there other than her handbag.  She was writing when I first met her.  “I’ve been writing my story to read out at the appeal” she said.  I knew that she wouldn’t have the chance to do so because the appeal was to be in two parts.  The first hour would listen to medical evidence.  The second part would consider the legal factors associated with Bethan’s detention.  The solicitor told me that I would be allowed to address the first part of the appeal.

The panel consisted of a Judge, a Lay-Member and a General Practitioner.  Also in attendance, though not part of the panel was her Solicitor and her Psychiatrist.

I was asked to offer any comments and I informed the panel that once B₁₂ injections are given then the serum B₁₂ test is next to useless to further monitor the patient’s B₁₂ status.  I also made them aware that the British National Formulary states that the treatment for Pernicious Anaemia is “for life”.

The Psychiatrist, who appeared to be a genuinely amicable and caring professional, told the panel that Bethan’s serum B₁₂ level was “over two thousand” and that the threshold for determining B₁₂ Deficiency was around two hundred.

The judge sought clarification as to the problem of overdosing on B₁₂ and I was able to say with certainty that there was no danger and that any excess is passed away in urine.  He then asked the psychiatrist why he didn’t just give the injections anyway – as there was no problem of overdosing.

“The Primary Care Trust would take a very dim view of me prescribing an injection when there was no clinical need” was his reply.

I then explained about the Active and Inactive B₁₂ test which interested the GP and Psychiatrist very much.  “In around ten years we will probably be using that” said the Psychiatrist.  I just sighed.

Bethan’s appeal was not successful and she is still in that clinically barren room.  I have promised to visit her once a week.  I don’t know what else I can do.

21/4/12

I visited Bethan yesterday and took her around ten Get Well cards from members of the PA Society from all corners of the earth.  She told me that she had received an injection of B12 on Wednesday.  This was confirmed by two of the nursing staff.  She is also getting daily Folic Acid Tablets.

28/4/12

I visited Bethan yesterday and took two more cards and some flowers and chocolates.  She told me that she had been ‘in the community’ on Wednesday .  This meant that she wall allowed out of the hospital escorted by two nurses.  She had visited the bank and Asda.  She had even been able to go back to her house although for not as long as she would have liked.  She is allowed up to two hours a day community visits but has to be escorted.  Many of you have enquired about the hospital that she is at and I have to say that it is quite unlike any Psychiatric hospital that is usually imagined.  Yes, she is on a secure ward but she has her own room with bathroom which is kept spotlessly clean as is the rest of the hospital.  Bethan is still a long way from being released but is receiving excellent care.  The problem is that she doesn’t agree that she is ill, which she most certainly is, and because of this she is very frustrated and can’t understand why she is not at home.  I am sure that she will recover as the nursing staff are dedicated, kind and caring.  But I don’t think she will be ready to go home for a while yet.  I have written to her GP stating that her B12 should never have been stopped even though her serum B12 levels were high.  I havve yet to receive a reply.  I promised Bethan that I would be at her Appeal which takes place on Thursday.

Thank you for all of your concerns and for enquiring about Bethan’s progress.  The cards mean a great deal to her coming as they do from all corners of the earth.

Bethan had an appeal against her detention on Thursday (the 3rd) and I went along for moral support.  The appeal was turned down but only after a panel of three peers carefully heard evidence from Bethan’s medical team and her solicitor.  The whole proceeding took over an hour.  But – it’s not all doom and gloom.  I discovered that she is now on two weekly injections of B12 and this will carry on for three months.  She is also being given 5mg of Folic Acid daily.  Bethan has asked me to thank you all for your kindness and get well cards.  I will keep you updated.

Names have been changed to preserve anonymity.

Bethan sometimes phones the society’s office to seek clarification on certain things as she has Pernicious Anaemia following major stomach surgery in the early 1970s.  She has been receiving monthly B12 injections for the past thirty five years.  It was her surgeon who prescribed the monthly injections.   Two years ago she was told that she could only have the injection every three months.  She ‘phoned to tell me this when her treatment regime was changed.  Unfortunately there was nothing that I could do to help. She phoned a few times since complaining that she was deteriorating.

On Tuesday she telephoned me in quite a state.  She hadn’t had an injection for over a year – “they told me I didn’t have Pernicious Anaemia any more”.  Bethan was telephoning from inside a Psychiatric Hospital.  She had been forceably admitted under Section 3 of the Mental Health Act.

She was lucid, coherent and frightened, very frightened.

Well, it’s written and is now with the publisher being edited.  It is due for publication in early April of this year and the title has been agreed as being:

Pernicious Anaemia – the forgotten disease.  The Causes and Consequences of Vitamin B12 Deficiency.

Choosing the title was harder than writing the book as it had to include Vitamin B12 Deficiency.  The book is written in plain English which, when you are describing complex biochemistry can be a challenge and it includes lots of case studies showing how shabbily we sufferers are being treated.

If you want any more information please don’t hesitate to ask on here.

Bye for now

M

I told her that she was very fortunate in having such an understanding doctor but she was more concerned about the cause of the deficiency – “It’s so frustrating” she told me.  I replied that having to wait three months for injections would be much more frustrating.  I told her that her doctor should be congratulated.  “He’s German” she told me.

UPDATE

I had an email from the patient’s daughter -this is what she wrote:

Just had a phone call from Mum’s surgery from Dr. L who was her doctor before he retired (Dr. A is her new doctor).  He said the reason they postponed her B12 injections was because in August when they did the blood test her level was over 1,000, (so in actual fact it must have been July when Mum had her last injection as it was a month after that she had the blood test).  He said that level was too high so they waited for it to go down a bit before giving her more injections.  I did say that it was bound to be high if a blood test was taken only a month after the injection (no comment).  In November the level was 638 he said.  He asked why she didn’t say she was feeling low!!!!!  I told him she rang twice last week for a home visit and was fobbed off by the nurse (no comment).  Anyway the upshot is that he said if she can get herself down to the surgery tomorrow, she can have the injection – halleluia!  He then said they usually do B12 injections every 3 months!  It appears that if she wants a home visit that would take a bit longer to organise so best to strike while the iron’s hot and try to make her own way there.

Anyway, Mum has arranged for a taxi to take her to the surgery tomorrow afternoon and the taxi will pick her up a bit later, the appointment has been made for the injection and everything……..

Just hope now that we never have a repeat of this again.

I would like to thank you again very much for your kind help and assistance.  I don’t know what I’d have done without your advice.  Good result!

Kitty is an ex police officer and one of the old school – despite her advancing years she still takes care of herself.  I know that the last time I spoke with her she told me that she had broken her hip in a fall – she has Osteoporitis.  Kitty couldn’t be doing with nurses and so, for the past forty years she has been injecting herself, intramuscularly, with Hycroxocobalamin for which she received prescriptions from her doctor.

She left a message last week on the answerphone asking me to call her.  Then she left another about four hours later, there had been nobody in the office to take her calls or to listen to the answer machine.  I called her first thing on Thursday morning as she sounded so desperate.  There was no answer.  I called again in the early afternoon and she answered the phone sobbing.

“The nurse is here – please can you have a word with her?  They’ve stopped my injections”, she was obviously in quite a state.  I spoke to the nurse who told me that the Doctor had decided that she no longer needed the monthly injections and might be allowed on every three months.  I asked if this was because of a recent blood test but was told no.  I pleased with the nurse pointing out that she gave herself the injection and so was of no bother to the surgery but all that the nurse could do was to tell me she would put my points to the doctor.  I asked to be put back on to Kitty who simply said “Bless You”.  I promised to phone in a few days.  The decision had been taken completely arbitarily and not on any scientific basis.

I spoke to her again yesterday – I was just about to telephone her when she called me.  Again she was tearful and was obviously upset. I asked her if there was anyone who could help her, someone to try to arbitrate with the doctor on her behalf. Kitty has no relatives, and she doesn’t bother with any of the other people living in the accommodation. “They’re always going on cruises and they never want to bother with anyone else” she told me.  She had just one friend who she saw every Sunday at church.    After forty years of looking after herself she was now at a loss why anyone would take her medication away from her.  Now it may be that Kitty, because of her advancing years, was not deemed capable of injecting herself any more.   Maybe the nurse was unable to explain this because Kitty was within earshot and might have been offended by this explanation , but she doesn’t sound like she is incapable of anything.  I tried to reassure Kitty and promised that I would go and visit her sooner rather than later.  Maybe I could take her a little something.  What would you do?

Below is a selection of the stories in condensed form and with the original names having been changed to protect patient’s identities:

The Lorry Driver’s Christmas.  “My son is 36 yrs old and he might as well be 80.  He is struggling to keep his job as a heavy goods vehicle driver.  He is constantly tired, comes home from his work and usually goes straight to bed without even bothering to eat anything.  He has absolutely no social life.  Last Christmas he finished work at 4pm on Christmas eve, went to bed and didn’t get up until 4pm on Boxing Day.  He struggles to find words, is irritable, cannot concentrate and yet his GP just tells him that he is slightly depressed and that he needs to ‘get a life’.  I am watching my son die a slow horrible death. His grandmother had Pernicious Anaemia and I suspect he has it too.  He has had blood tests and they show that his B12 level is 152mcg/ml.  The doctor has told him that he cannot have any B12 until his levels fall below 150.  He will be next tested in September”.

Bill’s Ruined Holiday.“They offered me Anti-Depressants when I asked for an injection at ten weeks instead of twelve” says Bill, 72 yrs old from Birmingham.  “I have been fighting this for fifteen years.  A few days after the injection I feel fine, then after about a month I start going downhill again.  When the nurse took blood after ten weeks she was horrified to see that it was over 500 and so refused to give me another injection until another three months and two weeks had passed.  So I had to go begging the doctor to at least re-instate the three month regime.  Three weeks ago, just before I went on my two week holiday I went to him and asked if I could have the injection before I went on holiday – the three months was up the day after I got back from Spain. I even offered to pay him anything he wanted just to give it to me now and then.   He refused and I had a horrible time away.  I even took the little glass bottle with the injection in it in case I collapsed.  The doctor told me he couldn’t possibly give it to me at ten weeks because ‘it will thicken your blood and you could easily die’”

The Inmate.  I received a letter from a patient who is currently in custody serving a prison sentance.  The letter was the usual stuff about not being able to access more frequent injections and the prison doctor suggesting that he might be depressed.  I had to send him the information pack that we send to new members with the usual information on the different supplements that he could be taking – although I know well enough that any sub-lingual lozenges, or oral sprays will probably not be allowed by the prison authorities.  From news stories about prison life it is probable that he would be able to access heroin much easier than getting hold of an injection of Vitamin B12.  What does that tell you?