Martyn Hooper MBE – Chair of the PAS

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Dementia Sufferer & B12

by | Jan 22, 2016 | 9 comments

dementiaI often think that I’m becoming ‘case hardened’ when dealing with telephone calls to the Pernicious Anaemia Society’s offices.  ‘Case Hardened’ is a term usually associated with the legal profession, specifically judges who, because they hear so many cases associated with tragedy and sadness become immune to the emotional aspects of the case and concentrate solely on the facts placed before them.  I take about nine calls a day, most of them concern bad medicine relating to misdiagnosis, non-diagnosis and poor, and, unfortunately all too often no treatment at all.  The calls are wearing because of the complexity of the issues involved.  Every so often I get a junk call from an energy company or whatever and these help to lighten my day – I must be one of the only people who enjoy these cold calls which tells you a lot about the content of the usual conversations I have.  I’m not moaning you understand, I like helping people and getting them to understand the issues involved, but they are often complicated and, as I have said, I seem to have given up on being astonished at what is happening to our members and have become, I suppose, ‘case hardened’.

And then a call comes in that shakes me from my complacency with a vigour that brings me back to earth to realise just how badly Pernicious Anaemia is treated.  I received one such call yesterday.  Be warned – what you are about to read might very well leave you feeling angry, confused and totally lost for words.

It came from a well-spoken gentleman.  I don’t know what his profession was but he was obviously intelligent and probably successful in whatever career he had chosen.  As is often the case he was calling about a relative, in this case a close relative – his wife.

“She has dementia” he told me.  “She’s in her seventies and over the past three years we have stood by and watched her deteriorate.  She now needs 24 hour care and thankfully my two daughters are able to help.  One lives nearby and the other has moved back in with us to help care for her mother”.  So there you have a picture of a caring close family who have rallied around to help the matriarch of the family deal with her illness.  I had a suspicion of what was coming and I wasn’t wrong.

“She, my wife, gets an injection every three months for her Pernicious Anaemia which she was diagnosed with twenty years ago.  The thing is we have all noticed that, after four to five weeks after her injection, she becomes, it’s hard to explain this, but she sort of becomes more agitated and anxious.  Her behaviour changes and even though she appears more anxious and frustrated, she refuses to respond to any kind of stimuli.  Just after her injection she enjoys listening to music, or having stories read to her,  but after four to five weeks she completely loses interest in anything we try to do.  We have mentioned this to her doctor and to the nurse who visits us to give her the injection and have asked for her injections to be increased to every four weeks.  The nurse said she would ask the doctor if she could have the injection every four weeks but she wasn’t optimistic and later told us that the doctor wouldn’t hear of it. What can we do?  It’s awful to see her like this and we are continually counting down to her next injection”.

Now, I don’t usually ask for comments from you but in this case what would you suggest?  And please bear in mind that the family would not want to do anything without the knowledge or approval of the lady’s doctor.  You see, I could suggest a number of options (which I did) but there is a bigger issue here.  How many mothers and wives, and fathers and husbands are also experiencing this problem of getting treatment according to their needs.  Yes, it makes me angry; yes of course it makes me frustrated; but these stories, these horrific stories of unnecessary suffering, serve to wake me from my stupor of treating these cases with a contemptuous familiarity and they act as a sort of wake up call for me to carry on the work I do in trying to get the way in which patients with Pernicious Anaemia are treated.

Please tell me what you would have advised the family.  And remember, don’t get angry; this is a real problem and throwing around insults and bad language will not change things; getting our message listened to and acted upon requires tact, diplomacy and just as importantly evidence.  I’ll be genuinely interested in your suggested responses.

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  1. Sarah

    That is such a sad case but not isolated.

    Is there any chance the family might get support from Alzheimer’s UK or their MP as well as the PAS?

  2. LJM

    There’s a very similar case on the PAS health Unlocked Forum: A relative with Parkinsons who had improved enormously with B12 injections but whose injections were then limited by the GP on the basis, I understand, that they can’t treat all the elderly people who need B12.
    I don’t know what the answer is other than to self-treat with lozenges and patches, if you can afford to, collect all the evidence you can and ask the GP again, ask the practice manager and the health authority.
    Keep a daily written log of symptoms throughout the period between injections and show that to the GP.
    I believe in other countries you can buy the injections OTC so not sure why it is such a battle in the UK. Someone somewhere must have an answer.

  3. Mary Epke

    I’m sure that there are hundreds if not thousands of cses like this. I am 79, and could also be suffering in the same way,but I had to take my treatment into my own hands,due to my doctors’ attitude(1 injection of B12 every three momths.) I self-inject every 2 weeks and am now fine. Why would they not consider this? We all know that the doctors are mistaken with much of their treatment of P.A. It is not illegal to self inject. Trouble is if the situation is allowed to continue it will be totally irreversible. Can they not be persuaded? Can they not be helped in the first instance to write a letter to the doctor concerned?

  4. Karen Saxl

    I was diagnosed with a B12 deficiency in 2012. For a few years before that I’d noticed a step change in my mothers mental health as it became obvious that she was struggling with adding up columns of figures. She’s a diabetic and has been on metformin for years … as was her father. Anyway, at the time I wasn’t aware of B12 so just lived with it. Then, about the middle of last year my mothers behaviour got really erratic – and her decision making even more so – suspicion fell on insulin medication … and various infections. I dragged her along to the GP for a check up after losing her twice at a hospital appointment and having to call out security to find her – she wandered off convinced her appointment was somewhere else entirely. They did a blood screening which I was relieved to see included B12 but before the results came through she’d been hospitalised as the result of an insulin overdose – administered by the district nurse but never mind. She spent weeks in hospital and then a few weeks in the local cottage hospital and then I found out by looking through the district nurses notes in her flat that she was on B12 as her levels had fallen substantially between the screening and when she was in the cottage hospital. She’d picked up quite a bit in the cottage hospital and then started to go down hill which was one reason for looking through the notes … and then I realised that it was probably down to B12 so started her on a nasal spray 2 times a day. In the meantime we arranged for a carer to live in so I didn’t have to go round to the flat all the time to get her to use the spray. A few weeks later the spray ran out but the carer hadn’t realised … and, surprise, my mother deteriorated quite dramatically. The carer got really worried but I replaced the B12 and within a day mum had picked up – like me she seems to need enormous amounts of B12.
    It is quite difficult to know what to do about doctors that don’t understand that B12 is such a personal thing and it took me a long time to figure out what was right for me B12 wise … and discovering how well the nasal spray worked for me was a bit of an accident. I don’t know what I would have advised in the instance above… just the action that I have taken … and yes her GP does know as I’ve told him what I was going to do though there probably isn’t anything formal on her records – he’s a diabetes specialist but has at least listened and taken some action on my concerns about B12 – mum’s no longer on metformin (and think that was probably a mis-assessment of what type of diabetes she has as she is MODY rather than type 2 and her particular MODY doesn’t respond that well to metformin.
    I guess the starting point is to have information and try to at least have a conversation with the GP – after that it really depends on the attitude of the GP and whether they are prepared to listen and work with the patient and those around the patient. If they aren’t prepared to listen then they probably need to go on one of the customer relations programs that the NHS was talking about a couple of months back.

  5. Mabsie

    Perhaps practice manager first, if no joy then PALS for advice and help. CAB might advise, It’s an awful situation for this family. It is so frustrating. Wish I could be of more help.

  6. Rachel

    My advice would not be to the family, but rather to you Martyn, and to any other B12D ambassador. And it would be this.

    Build a list. Build a list of doctors, of GPs, Neurologists, Haematologists, private or NHS. Keep your list of doctors that you have already educated successfully, who you know to be informed and willing to treat patients in accordance with best practice guidelines.

    And then share that list with the people who need your help.

    Education of sufferers is all well and good, and providing sick people with the information and tools to educate their ignorant physicians is laudable. But first, signpost people to wherever treatment is already available within our healthcare system, from practitioners who don’t require the sick patient to endure the soul-destroying process of begging, pleading, educating, referencing, bargaining, self-treating, and doctor shopping.

    The question many sufferers need an answer to is “who can I rely upon for treatment in my local area?

  7. Sue Holland

    This is a very sad case. It is hard not to be very angry on their behalf. The problem is if they won’t do anything without the G P’s knowledge or approval you’re stuck. I am in a similar situation with my husband (although not half so bad as this family) I buy the injections over the counter when abroad and give him the injections inbetween the 12 weekly ones from the GP. Life would be unbearable otherwise ! But we are not worried about not telling the GP. I am so frustrated for them. Could they give the Dr your book to read ? No easy solution here.

  8. L Mann


    Unless he considers it a breach of privacy, the man might try videotaping some of his wife’s typical behavior and activities when B12 is working at it’s peak, and again when the effect has worn off, with dates kept. Then show it to the physician who makes the decision about B12 dose.


  9. Jane

    I am at a loss to understand why there seems to be such reluctance on the part of the medical profession to administer a cheap, effective, non-toxic treatment. This problem seems anecdotally from Facebook and other internet groups of sufferers to be widespread. Whether underprescribing is due to ignorance, misinformation or the fact that the pharmaceutical industry cannot benefit and therefore do not promote it I cannot fathom. My sympathies to this family. My suggestion is similar to above comments. Make a simple table, symptoms down one side, dates across the top. Use a straightforward system eg plus signs to indicate symptoms worsening and how much, minus for improvement. It has to be understood quickly, as medics have no time to spare. After a couple of months the table should show how long the injection is effective and how long afterwards symptoms recur. It provides the doctor with a logical, unemotional ‘reason’ to review their prescribing. Fingers crossed.


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