Pernicious Anaemia Society
Just a quick note to say that all of those who have registered to take part in the research looking into why some patients need more frequent treatment than others will be receiving another questionnaire soon. This is because we have had to make a few slight alterations to the original form that you filled in on the advice of the Medical Ethics Committee.
Taylor Morgan will be coordinating the programme and so you will be receiving an email from her in the near future.
Staying with this subject we are still struggling to find twenty people who manage perfectly well on the current 12 weekly regimen that is used in the UK so please, if you do not experience a return of the symptoms of your Pernicious Anaemia before the twelve weeks is up please get in contact with us.
If you haven’t already registered and would like to do so please complete the short survey here:
Now how about this for progress? I interviewed a highly respected Bio-Scientist for my next book and asked him whether some patients would respond better to one form of B12 than another. Here’s his reply:
“Cyanocobalamin is the most stable of these compounds, hydroxycobalamin has a tendency to break down and methylcobalamin, as with adenosylcobalamin, is light sensitive (although slightly more stable than adenosylcobalamin). We require more data on the stability of these molecules during the uptake process and the integration of the molecules into cells. Only then will we be able to determine the best form of cobalamin for administration – and even then there is the possibility that there may be some variation with some patients having a preference for different forms”.
That’s something that members of the Pernicious Anaemia Society have been aware of for years – some respond better to one form of artificial B12 than other forms.
My next book is due out in November.
Saturday 30th May I’ll be at the Burlington Hotel in Birmingham city centre to meet members from the surrounding area and further afield. Please feel free to pop into the Lounge where I’ll be from 10:30 until 1pm.
Macdonald Burlington Hotel in Birmingham
Burlington Arcade, 126 New StreetBirminghamB2 4JQ
See you there!
My next book about Pernicious Anaemia is due to be published in November. It brings together two papers published last year; the first of these was the results of the survey of members that was published in April of last year and details how members of the society were diagnosed or not diagnosed – 14% waited over ten years to be told the correct reason for their symptoms etc. The second important paper was the new Guidelines on Cobalamin and Folate published by the British Committee for Standards in Haematology (BCSH) in June of last year. For my book I had to carefully analyse these guidelines and they really are a remarkable admission that the way in which B12 Deficiency in general and Pernicious Anaemia in particular is diagnosed is nothing short of a mess. What I have done is to show how those shortfalls in the diagnostic procedure is impacting on patients; it’s the human face of what the guidelines identify as problems.
When I made a presentation to the conference of Podiatrists in Leicester last year I was asked by several of the delegates if I would make a similar presentation to their regional groups. I have made eight such presentations all over the UK, from Southampton in the south to Huddersfield in the north and I have another three meetings lined up stretching into November. Podiatrists are continually being told to look out for peripheral neuropathy as an indicator of diabetes. And the vast majority of my audiences have never thought of any neuropathy being associated with Pernicious Anaemia – so I’m doing my bit to raise awareness which is all that I can do.
Later this month I am giving a presentation to around 40 Post Graduate Doctors and my talk will centre on my next book (out in November just in case you wondered) and so will deal with how the failings in the current diagnostic procedure is impacting on patients. I have taken excerpts from the Guidelines and linked them with statistics from our survey – clever eh! The result is an exposition of how the failings in the current test is affecting patients.
I don’t want things to end there. I want to make greater use of the presentation and so am offering myself as being available to deliver the presentation to whoever is interested, doctors, other health professionals and anyone with an interest in this. If you are able to identify a group of people who you think might be interested in what I have to say please ask them to get in touch with me. I have already been in contact with the officials at the Dept of Health who are extremely interested and are working with us at the society to promote my presentation.
Please note there may be a small charge involved for non-medical professionals to cover travel expenses.
Today I have finished the penultimate chapter of my next book – ‘What You Should Know About Vitamin B12 Deficiency and Pernicious Anaemia’. The book is due to be published in the autumn and is an up to date exploration of the issues surrounding the way in which Vitamin B12 is diagnosed and Pernicious Anaemia is diagnosed and treated.
It’s nearly three years since my first book on Pernicious Anaemia was published – ‘Pernicious Anaemia: the forgotten disease
and nearly two years since my second book appeared – ‘Living with Pernicious Anaemia’
Since these book were written the Pernicious Anaemia Society has made great strides in raising awareness of the problems with diagnosing and treating Pernicious Anaemia. Using tact, diplomacy and calling on vast reserves of patience the PA Society is now recognised as being a legitimate and knowledgeable source of information by the medical community. Things are changing and this latest book examines some of those changes. For example did you know the following:
If you have low B12 but test negative for the Intrinsic Factor Antibody you should still be diagnosed as having Pernicious Anaemia – you should be diagnosed as having NegABPA
Current guidelines on dietary intake and treatment of PA is based on a study that began in 1948, lasted for ten years and was based on 7, yes 7 patients who had Pernicious Anaemia
There’s lots more of this in the book. Anyway – how do you fancy designing the front cover or jotting down some ideas for the new book? If you have a Graphic Design background you can go ahead and design the full cover or if you do not have a background in Design simply give us some ideas by selecting picture that we could use.
The first two books were part histories of PA and part exposes of the dreadful way in which the disease is diagnosed and treated. This new book is more contemporary and explores the achievements made by the PA Society. The new cover should reflect this and the semiotics involved are:
A Mess; Discovery; Progress; Commitment; Reliable; Trustworthy; Reputable
There’s a £100 prize with a further £100 being donated to the Pernicious Anaemia Society. A team from Hammersmith Health Books (the publisher) will be the judges. Deadline for applications is 1pm May 8th of this year – so you have three weeks. Please send your entry to
info’at’pasoc.org.uk – replace the ‘at’ with the @ sign.
Yesterday a bland email floated into my inbox and sat there for a few hours before I eventually opened it. What it contained was the result of two years work by a well-known clinical researcher to gain approval for a small ‘proof of concept’ research project to investigate the phenomenon of why some patients need more frequent injections than others. For two years the society and the team of researchers has had to convince the regional medical ethics committee that overseas the university where the project will take place, that every, and I mean every practical step has been taken to ensure that the human tissues that will be involved in the project will be accounted for the duration of the research. At times it seemed that the requirements of the committee were unreasonable and although approval was denied just once every subsequent submission was returned with requests for more information, more names of responsible individuals, more clarification of procedures etc. Well, anyway we’ve now got permission for the research to go ahead.
It’s over two years since we first asked for volunteers to put their names forward and now I will have to dig around the files in the office to find the list of participants. The volunteer who was looking after the file has long disappeared into medical school but I’m sure it will be found. I suppose it’s time to switch on the freezer that will be used to store the tissue samples – it’s over a year since we purchased it and everyday it has been a reminder that the project is yet to get under way.
It does seem like a lot of bureaucratic red tape but the ethics committee has to make sure that the tissue samples are treated with due respect and are accounted for at all times. This is because in the past, when research programs have been conducted, body parts and other items belonging to participants have gone missing or ended up in all manner of strange places. Unscrupulous or careless researchers in the past has meant that strict controls are now in place to ensure that the dignity and respect of those involved in the research is observed. And our little experiment is not different – even if the body tissues that we will be using are lowly stool samples.
I’ve just received news that my petition to the Welsh Government’s Petitions Committee will be considering my petition in light of the Minister for Health’s response to their request for his views on patient’s receiving more frequent injections should they need them. I suspect he has been advised that oral supplementation using 1mg tablets could be introduced as a way of supplementing between injections.
Thankfully the new Guidelines from the British Committee for Standards in Haematology state that injections are the preferred treatment so I am prepared to give a rigorous response. I have already written to the petition organiser providing additional information in support of my petition.
The petition will be considered at our next meeting on Tuesday 10 March at 9.00am.
This is the link – it’a about 25 minutes into the session:
A great big thank you to Madelaine Moon, MP for Bridgend, for organising the Parliamentary Reception held on the 3rd of this month and another thank you to all those MP’s who turned up to hear what I had to say in the House of Commons’ Jubilee Room. Just over a week has passed and some of those MP’s who attended were so surprised at
what we had to say that they have submitted written questions to the Secretary of State for Health – the Right Honourable Norman Lamb MP. Several answers have now been received which are, to a certain extent stock answers written by civil servants before being approved by the Secretary of State.
The answers quite rightly point the MP to the new Guidelines issued by the British Committee for Standards in Haematology that were published last year.
” The treatment is well established and set out in the new guidelines and state that injections should be given every three months unless there is neurological symptoms when the patient should be treated every two months” (This is my paraphrase of the answers).
Not much to go on there really but the final paragraph does offer a glimmer of hope:
“However, the frequency with which vitamin B12 injections are provided to patients with pernicious anaemia is a matter for individual clinicians, taking into account the relevant clinical guidance, the prescribed dose and the patient’s response to the treatment”.
There’s something there for us to build on but don’t expect instant solutions. The patient’s response to the treatment should be included in the British National Formulary and so I will now embark on a mission to achieve this. That’s why I say there is some hope for change – but it will take an enormous amount of tact and diplomacy to achieve this. Wish me luck!
I like to think that I’ve become ‘case hardened’ over the years – case hardened to the way in which some patients are treated, or, in the case of 15 year old Bella Rockchic (not her real name you understand) not being treated.
It was Bella’s mother who first made contact with the society’s office. I don’t have a full transcript of the conversation but she told me that her 15 year old daughter had been ill for years suffering from the symptoms of severe B12 Deficiency.
“She’s continually tired, attends school only for a few hours in the morning then comes home and sleeps for six hours – more if I didn’t wake her.
“She has problems with her concentration and memory, she’s irritable, has severe sudden mood swings and because of all this she doesn’t have a social life at all”.
It was a tale that I had heard before and of course as I mentioned in my first book ‘Pernicious Anaemia: the forgotten disease‘ it is the tale of teenagers with Pernicious Anaemia that I find most frustrating and which sadden me most. However, it’s what Bella’s mother went on to say that really worried me.
“Now she’s having problems walking, her hands and feet are extremely painful and she’s getting pins and needles.”
“We managed to get her doctor to give her an injection of B12 every week for a month over Christmas and we couldn’t believe the difference in her – we even caught her smiling for the first time in years” she said.
It was at this point that I suggested that she and her daughter come to see me so that they could discuss the options available to them. They duly arrived after a three-hour car journey on Thursday of last week. What I saw startled me, but I have learned that rather than getting angry it is best to channel my energy into bringing about change in the way in which PA is diagnosed and treated – and this change will only come about by exerting pressure on those in authority to conduct a thorough review into the current issues affecting the disease.
Bella was a pretty young girl who was slightly built. As she walked towards me I was reminded how I walked immediately before my diagnosis – just like Herman Munster or an early portrayal of Frankenstein in films. My heart sank; what kind of future lay ahead for this young lady? What could I do about it?
Her Mother, Father, Bella and I began to tell their sad tale; how this deterioration had been going on for years; how doctors didn’t seem to believe them, how a few pennies worth of injections had turned her outlook around and how they felt right now – helpless. I was glad I was able to help. I suggested that they print out the bulletin of the new guidelines from the Library section of the website and hand it to Bella’s doctor;
“We’ve done that – he wouldn’t read them”.
We discussed over the counter remedies including the new sub-lingual spray which interested them as they had been using it though only sparingly. And it was then that I told them about doctors who practice IV infusions of Methylcobalamin and self-injecting sub-cut Methyl as often as they saw fit – and that was when I could see that they had, for the first time in many years some hope of dealing with Bella’s problems. I provided them with the name of a few doctors near them who would be able to help and they left the office a lot happier than when they had first arrived.
I couldn’t be sure but as Bella shuffled away I thought she had a slight spring in her step.
Well that was an interesting two days – one in Oxford and one in London. The reason for all the travelling was a presentation that I was invited to attend at Oxford University by a husband and wife team of researchers who are both now working in academia in Australia.
The presentation featured a new test for B12 that doesn’t simply look at the amount of B12 in the blood but also measures the patient’s Homocysteine, MMA and Folate – a much better test than the one currently used to determine B12 status in patients. The new device uses fibre optics to actually analyse the chemical component of the patient’s blood rather than indicators of blood health – at least that’s what I understood from the highly complex and clever science involved. What is most significant is that the new test, which is still at the prototype stage of development, will use nano technology at its core which means that it will be possible that the device will be small enough to be hand held. And this means that it could, or should, be part of the primary care physicians toolkit enabling the doctor to evaluate the B12 status of the patient quickly and accurately.
I see the real potential of this being used to ‘screen’ the public in primary care setting and that, hopefully, will mean that patients who have B12 Deficiency, whether caused by Pernicious Anaemia or not (and remember that PA is the most common cause of B12 Deficiency) will have the deficiency identified earlier. This is certainly an exciting development.