Martyn Hooper

Pernicious Anaemia Society

At Last! Medical Ethics Approval for Research Project Granted

by on Mar.18, 2015, under Pernicious Anaemia Society

Yesterday a bland email floated into my inbox and sat there for a few hours before I eventually opened it.  What it PENTAX Imagecontained 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 samstool-sample1ples 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.

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Welsh Government’s Petition Committee

by on Mar.07, 2015, under Pernicious Anaemia Society

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 organiSenyddser 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:

http://senedd.tv/Meeting/Archive/469c5559-8d69-4f1f-89c0-91ebdb94a3dd?autostart=True#

 

 

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Replies to Questions asked to the Secretary of State for Health

by on Feb.11, 2015, under Pernicious Anaemia Society

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

The Jubilee Room

The Jubilee Room

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!

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Another Shocker!

by on Feb.10, 2015, under Pernicious Anaemia Society

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.

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Handheld B12 Tester

by on Jan.31, 2015, under Pernicious Anaemia Society

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.

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New Tests for B12

by on Jan.22, 2015, under Pernicious Anaemia Society

Well, well, well!  Just as I was thinking of how to try and get the research community interested in investigating the problems with the current test to determine the B12 status of patients along come two significant developments that directly address this problem.

First up is a paper just published that uses not just one test to determine a patient’s B12 status but a combination of four tests: serum B12 (which is the one currently used in 99% of cases), the ‘active’ B12 test (holotranscobalamin), Homocysteine and Methylmalonic Acid.  All four tests are useful in determining just how much B12 a person will have but no single one appears to be perfect which is why the four tests are combined.

The paper involves some very complex mathematics and this is because the authors have been able to show that if one or two of the tests are not conducted their outcome can be estimated using the results of the other tests.

Combined indicator of vitamin B 12 status: modification for missing biomarkers and folate status and recommendations for revised cut-points: Sergey N. Fedosov, Alex Brito, Joshua W. Miller, Ralph Green and Lindsay H. Allen; Clin Chem Lab Med 2015; DOI 10.1515/cclm-2014-0818

The second development concerns a team of researchers from outside the UK who are meeting with academics from Oxford University.  I’m unable to give details of this new project but it does involve a new way of monitoring patients’ B12 status.  I have been invited to attend the meeting which, of course, I will be doing.

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New Strategic Plan – 2015 – 2018

by on Jan.17, 2015, under Pernicious Anaemia Society

The finishing touches have now been added to the Pernicious Anaemia Society’s new Strategic Plan that acts as the blueprint for the society’s development for the next three years.

The financial auditors of the society’s accounts were asked, in June 2014 to investigate funding opportunities in order that we can reimburse the volunteers who help keep the society afloat.  For the last twelve years (ten as a registered charity) the society has been run entirely by volunteers and as the society has grown so has the demands on the volunteers and it was hoped that some money could be paid to these stalwarts of the society in order to compensate them as the volunteering was now affecting the time spent on their everyday work.  The auditors met with the me and two other volunteers in June and reported back in October.

The October meeting began with the auditors reporting that the amount of money we were looking for (a few thousand pounds per year) was too big a sum for small granters and far too small for large grant making bodies.  I should add here that the auditors concentrate solely on charities – so they know the third sector inside out).  And then there came the hard truth – we were told that, if we continued as we were – running the society by volunteers and not really driving a change agenda because we are so immersed in dealing with every day issues – then we would cease to operate within a few years.  It was a statement that we agreed with.  The society is simply too big to survive in its current form and although the volunteers who were struggling to meet the demands made by members and also researchers and other institutions it was something that we had never discussed and were, to a certain extent in denial of.  The truth was finally being acknowledged and, as the auditors pointed out to us, we now needed to stop being a small charity struggling to keep up with demands from various quarters and become a professionally run organisation employing people who are experienced in the third sector with a network of contacts to help bring about change.  There was, we were told, no alternative.  If we don’t change we will cease to exist – the auditors had seen it happen on several occasions.  And so, we have to change.  And change, in any shape or form, is always a difficult thing for any organisation to do.  What is important is that we manage the change and that will require even more efforts from the volunteers – including me.

 

 

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REVIEW OF 2014 (Updated)

by on Jan.01, 2015, under Pernicious Anaemia Society

index2014 began with the PA Society having to deal with a serious problem with the core of our service – our website.  Tastic Multimedia, our webmasters and who had been responsible for the setting up of the charity since its inception went into receivership the day before Christmas eve 2013.  It meant that for the first part of the year all activity and resources were channeled into ensuring that the website remained operational.  In the Spring of 2014 we were able to source funds to revamp and modernise the website and in June all was back running perfectly.  Unfortunately the forum, which had been such an important source of advice and guidance was unable to be moderated and we had to take the decision to make all of the posts ‘read only’ but perhaps the society had grown too big to support what was proving to be quite a labour intensive service.  It was a very shaky start to the year but one that we survived and we continue to grow stronger.

MILESTONES

It is easy to forget that two important, very important milestones were passed in 2014.  The first of these was the publication, in a highly respected health Journal of the results of our survey of members experiences.  Dr Andrew McCaddon had written up the results into an established format had previously submitted the paper to two other journals, both of which meant altering the format of the paper before finally the British Journal of Nursing accepted the paper for publication in April.  The survey was originally designed and produced by Dr Fiona Porter, a Welsh GP and a member of the society.  For the very first time here was the evidence that there were serious problems with the way in which Pernicious Anaemia is diagnosed and treated.  14% of our members waited over ten years for a diagnosis which is quite a shocking statistic on its own, but when it is also known that 21% waited two years or more for a diagnosis and 19% waited five years or more to be told what was wrong with them the numbers are not only shocking but quite shocking when you take into consideration that left untreated a deficiency in B12 leads to serious and irreversible nerve damage.  The paper is not without faults – respondents would have been members of the PA Society and therefore would have likely had a troublesome time which is why they joined the society.  However 5% of respondents rated their care as ‘excellent’ and so not all members would have been diagnosed and treated badly.  The main thing to remember about the paper is that it shouldn’t be viewed as a stand alone document but rather it is a statistical piece of evidence that reflects the postings and interactions on the many social media sites that have sprung up in the past few years.  And the fact that the paper was accepted for publication by a respected journal means that its integrity was subject to careful evaluation.  This was an extremely important milestone and one which is being discussed by medical professionals.

The second important milestone was the publication, in June, of the new Guidelines on Cobalamin and Folate that had been produced by the British Committee for Standards in Haematology.  These new guidelines were commissioned by the committee following a meeting with the Department of Health in May 2012.  The new guidelines are a bit of a curate’s egg in that there are good parts and disappointing parts.  The good bits centres around the current assay (test) that is used to determine the patient’s B12 status – the guidelines acknowledge, for the first time, that there are serious shortcomings in the test.  The guidelines actually tell doctors that, if there is a discordance between the patient’s symptoms and the test result then the test results should be ignored and treatment began to prevent any neurological issues developing.  This is an extremely important milestone that is nothing less than an admission that the current assay is not really fit for purpose and that doctors should resort to doing what doctors had previously done for more than half a century – diagnosing by listening to the patient and not relying on the results of the laboratory test.  Sadly, doctors are not heeding this advice simply because they haven’t and probably will not read the new guidelines.  I was surprised at this and on investigating why doctors wouldn’t take the time to read the publication I was told that it was due to there being so many new guidelines being issued that GPs simply don’t have the time to read through every new set of guidelines.  In July of 2014 I received a telephone call from a senior figure in the Dept of Health who asked if the society would like to help produce a downloadable app that GPs can access which will be based on the new guidelines and will involve the doctor answering a series of questions based around the guidelines.  If he or she gets them right they can then claim Continuing Professional Development (CPD) Credits.  Thankfully one of the society’s supporter who is a GP has taken on this project and we are extremely grateful for her so doing.  On New Year’s Eve I had a telephone call from a member whose mother, who is in her 80s has all of the symptoms of PA including pins and needles and some numbness.  Both the caller and her sister have been diagnosed with having classic, intrinsic factor antibody PA.  Her mother’s serum B12 levels is at or around 230mg/ml with the laboratory threshold being 200.  Despite the caller printing off the summary of the new guidelines that are on the Medical Professionals part of the website the GP is refusing to treat the elderly lady.  The family now have no alternative but to by-pass their healthcare system and purchase Methylcobalamin from suppliers in the north of England.  Thankfully the callers sister is a nurse and so will be able to administer the injections in a professional manner.  These incidents of doctors refusing to depart from normal clinical practice and treat patients who have all the symptoms of PA but whose serum B12 is not below the threshold stated by the laboratory happens all the time which proves the need for the downloadable app. n The new Guidelines also, for the first time, acknowledges that some people will test negative for the intrinsic factor antibody but WILL still have Pernicious Anaemia;  in short the guidelines admit that the way in which PA is diagnosed is nothing less than a mess.

The disappointing aspect of the New Guidelines concerns the treatment of PA with the guidelines simply stating that the whole issue of how often injections should be given is not a matter of the committee but for the British National Formulary.  And that is why in November I met with the Director of the BNF to address this issue.  At the meeting I was able to describe in detail what happens when members who need more frequent injections than the one given every twelve weeks are refused additional shots by their doctor.  There was much eyebrow raising and not only from the Director.  When I mentioned that the BNF recommended (not dictated but recommended) that a 1mg injection of Hydroxocobalamin be given every month in the 1960s and that this was changed to every two months in 1974 and then to every three months in 1984 I suggested that these changes were the result of a whim in an effort to save money.  I was told that I was wrong, and that the changes were made based on scientific knowledge and only after a great deal of discussion.  This would make sense but it was my turn to raise my eyebrows when I was told that the BNF were under pressure from some doctors and others to change the guidelines to every four, five or even six months, fortunately the same scientific evidence that was presented to change the treatment frequency in the past was not forthcoming to secure any further changes to an even less frequent duration between injections.  On a positive note I was told that if we, as a society, can provide the BNF with evidence that some doctors were giving more frequent injections than every three months then “the wording of the guidelines could be changed”.  As yet I haven’t figured out how to gather and provide this evidence – the main stumbling block is getting GPs to admit that they depart from the guidelines; after all the consequences could be that they might be censured for so doing.  What we really need is some hard, scientifically robust evidence why some people need more frequent injections than others, and this brings me to my next disappointment.

RESEARCH – please note that only the briefest details can be given due to the society having signed ‘Disclosure Agreements’ with the researchers.

In the summer, the research project being led by a leading Gastroenterologist failed to gain approval by the East of England Medical Ethics Committee.  The main reason was because the research team believed that, because the project involved only 20 patients no ‘control’ group was needed.  There were a few other ‘niggling’ recommendations which have also been addressed and the project has now been re-written and will be re-submitted to the committee in the near future.  This is such an important piece of work because it will provide some robust scientific evidence about B12 take-up.  It is a small project because it is a ‘proof of concept’ undertaking which will (hopefully) lead to a larger and more comprehensive investigation.

Again, in the summer, we were approached by another Gastroenterologist who wanted our assistance in a project that aims to ensure that anyone diagnosed as having Pernicious Anaemia would automatically undergo a colonoscopy and endoscopy (gastroscopy).  The reasoning behind this is that patients with PA will stand a bigger chance of developing stomach cancer than those who do not have the disease.  The figures relating to the chances of someone with PA developing stomach cancer are not reliable but it is generally accepted that those of us with PA stand a greater chance of developing stomach cancer.  Performing the procedures at diagnosis and then every three years will allow doctors to detect any abnormalities quickly thereby giving the patient a greater chance of a full recovery if there is anything sinister.  If you haven’t already done so please complete the survey on the society’s website.

In September I came across a press release which was about how a team of scientists in Bristol University had identified the gene that switches off (or on – I’m not sure which or perhaps it is both) the gene that causes autoimmune diseases and the sequence (not sure what that is but it’s to do with genes) that causes MS and Type 1 diabetes have already been identified.  I contacted the Professor leading the research and went to meet him in early November.  I told him that all the society can do is raise awareness of the plight of our members and he replied that I was “doing a damn good job because I hadn’t even thought of investigating the sequence that triggers PA”.  He then assured me that he would now be concentrating on looking for the genes or sequences that cause PA.  And this means that for the first time in the history of the disease somebody is actually going to investigate a potential cure for the disease instead of just treating it.

Another research project which is making steady, if slow progress is led by a senior researcher at a south coast university who is also a member of the society.  She is looking at a much more effective way of treating our B12 deficiency.  This project is still in the formative stage but does sound promising and holds out the hope that patients will be treated according to their individual needs.

Finally, and another project led by one of our members and fellow sufferers, a Psychologist has successfully applied for funding to work with the Pernicious Anaemia Society to investigate the psychological impact of the disease relating to how it affects day to day living – something that we are in a unique position to provide information about.  Work started on the project in the late summer and preliminary reports are expected later this year.

PRESENTATIONS

At the start of the year, following on from a series of presentation I had given to classes of nursing students we were deluged by nursing tutors to give presentations at various universities.  There were so many requests that I stopped giving them they were taking up too much of my time.  Following discussions with Carrie it was decided to make an hour-long video of my presentation which could be used by nurse tutors and another video that can be used by doctors in in-service training sessions.  Somehow these projects never came to fruition but events in the last three weeks have made us realise that there is a need for these videos to be produced and we aim to get these completed by late spring.

I have also made three presentations to Podiatrists (they are interested in the peripheral neuropathy that can develop due to late diagnosis) including one that was attended by several hundred.  I am already due to give another three groups of podiatrists my presentation between January 18th and March 5th.  I also gave a presentation at Thyroid Uk’s 2014 Conference.

PARLIAMENTARY RECEPTION

Just as Parliament was going into recess and with the help of Bridgend MP Madeleine Moon we applied to have use of the Jubilee Room in the House of Commons.  These two hour slots are extremely popular with any organisation, individual or groups of individuals who want to host an event where MPs, including Ministers and members of the House of Lords can meet the hosters and learn more about their cause.  We applied for a two hour slot, but it was an application that we didn’t expect to come to anything – after all this is a General Election Year and demand was going to be even greater than usual.  Well, it was a nice Christmas Present when we learned that we had indeed been

The Jubilee Room

The Jubilee Room

granted a two hour slot on Tuesday 3rd February 12-2pm.  This is an excellent opportunity to raise awareness among politicians of the problems that we, as patients face in getting an accurate and quick diagnosis and adequate treatment.  Go to the website of the PA Society and you will be able to access a template of a letter that you can complete and send to your MP inviting him or her to attend the event.  I will give three 5-minute presentations to all Members who attend.  Please write to your MP and ask him or her to attend the event.  Thanks once again to Madeleine Moon and her team for their continued support of the society.

RAISING AWARENESS

In the late summer I wrote to a variety of senior figures and institutions in the UK Healthcare system including:

The British Medical Association, Medicines and Healthcare Products Regulatory Agency, Royal College of Pathologists and the Royal Pharmaceutical Society.  Following those letters I met with either the President or Chief Executive of the organisations face to face to make them aware of the problems faced by our members.  All meetings were extremely useful and I was told on each occasion that the individuals or organisations concerned were unaware of the issues that I had raised.  I was also told to contact two other individuals whom I will be writing to in the next week or so requesting a meeting.  In the summer I, along with Carrie, met with the new Chairman of the National Institute for Health and Care Excellence (NICE) who was very supportive of our cause and requested that he be kept informed of developments.

This round of awareness raising was highly successful in that I became aware that the vast majority of medical professionals are completely ignorant of the plight of our members and I was very pleasantly surprised with the way not only was I received but also was listened to.  It’s all too easy to forget that these people have chosen their individual healthcare careers because they want to help people, genuinely want to help alleviate suffering.  Only by raising awareness can we provide them with the evidence,(and I choose that word very carefully because evidence aren’t necessarily facts until they are accepted as such) upon which they can come up with a solution.  That’s why the new guidelines are such a success story – we raised awareness that there were problems with the way in which our members were diagnosed and treated and those problems were addressed albeit without any firm alternative solutions – yet.

Another way in which we helped raise awareness was via letters to newspapers – I had four letters published in the national press this year including one that was addressed to a newspaper doctor who printed my response to her response to a letter she had received about the frequency of injections.

It would be all too easy to simply throw our arms in the air and run around shouting “it’s not fair” which is what some groups content themselves with doing.  If we did that nobody would take any notice of us and we would become even more frustrated.  What we are trying to do is to make medical professionals aware that there is a dire need for someone who knows what they are doing to get the way in which patients who have Pernicious Anaemia are diagnosed and treated thoroughly reviewed and, hopefully modernised and overhauled.  And we do this in competition with other patient support groups who all have their own agenda.  Shouting “unfair” will get us nowhere; presenting decision-makers with evidence that is other than anecdotal in a reasoned and logical way using established protocol and procedures will pay dividends in the end – though that end is still, I’m afraid, a long way off.  I have always said that this will be a long journey and my shoulder, along with others, is at the wheel; yet the wheel turns only very, very slowly – but it is turning.  And one of the ways in which we can get it to turn a little quicker is to get the backing of politicians to push our issues onto the political and research agendas which is why in the immediate future we shall be concentrating on the Parliamentary Reception and then on our Autumn Conference that Carrie is applying for grants as I write this.  And I have decided that it is at the conference that my next book, What You Need To Know About Pernicious Anaemia & B12 Deficiency will be launched.  You are the first to know this as my publisher originally wanted it to appear in June – I suppose I will have to speak with her soon.

All of the above took place alongside the day to day activities of the society.  On average we receive around six telephone enquiries per day which often leads to me getting involved in Employment Tribunals, Divorce proceedings though thankfully, and touch wood there have been no cases this year involving children being taken into care or (again touch wood) members having been detained under section 3 of the Mental Health Act following their treatment being stopped altogether.  There have been unfortunate incidences where patients have been told that they no longer need injections and that their treatment will now revolve around buying oral supplements from high street stores.  I like to think that we deal with these everyday incidences quickly and professionally and although it these incidences are rare they do happen and of course, we only get to hear about some of the malpractices that take place almost on a daily basis.

Thank you for all your continued support and for any help that you have given the society in the past year – be it by organising coffee mornings, running marathons, organising a local support group or posting on the Health Unlocked website.  Any help in whatever form is always most welcome.

And now, all that remains to be said is to wish you and your families a Happy New Year – or, as we say in Wales –

52104B

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Research Partners Forum

by on Dec.19, 2014, under Pernicious Anaemia Society

Monday the 15th of December (last Monday) Carrie and I met with our team of researchers who are working on three different projects relating to the diagnosis and treatment of Pernicious Anaemia.  We met for lunch in one of the private dining rooms at the Royal Society of Medicine for Christmas lunch and a general discussion and update on progress.  Starting at 12 and ending at 4 the event was highly successful with a great deal of information and knowledge being passed around the table.  Starting with the old chestnut of frequency of replacement therapy it now seems likely that there could be two causes of the reason behind why some patients need much more frequent injections than others.  Work begins on one of those theories in the middle of January as long as we get Medical Ethics Approval from the relevant medical ethics committee.  Finance has been secured and all equipment purchased – we now just need that approval.

The second reason that might explain why some people need more frequent injections than others involves some highly technical and complicated biochemistry and will most likely be investigated as a PhD project.  The interesting thing about the discussions on Monday is that there are so many unanswered questions about B12 – I mean some really fundamental questions about the molecule.  Interestingly the debate about this subject involved not only biochemists but GP’s, Pharmacologists and Gastroenterologists and it seems likely that as this research proposal progresses it will not be one discipline that will be investigating the problem but it will likely be a multi-disciplined team that carries out the work.

The third project that is being formulated involves a more user friendly and efficient delivery method of B12 (and no – that doesn’t involve tablets) and we also had news of another tablet based initiative taking place in the USA which involves not only a tablet containing B12 but also an absorption enzyme.  More of this later.

As the society has signed ‘non-disclosure’ agreements with the researchers we cannot give more information yet, but please be aware that a lot of activity is going on ‘behind the scenes’.  I will try to keep you up to date as developments occur.

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Meeting with the Executive of the British National Formulary

by on Nov.23, 2014, under Pernicious Anaemia Society

Eighteen months ago I submitted a re-evaluation request to the BNF asking them to look again at the treatment of Pernicious Anaemia.  The frequency of replacement therapy injections remains the single most common cause of complaint to the PA Society.  The re-evaluation was carried out, which involved a thorough investigation into any new research that had taken place around the treatment of PA (none was identified because no research had taken place), and the issue was then debated by a committee of the BNF which included my comments relating to the problem with some, though not all patients having problems getting a treatment regimen that is based on their individual needs.  Because no new evidence in the form of published papers existed the committee deemed it unnecessary to issue an update on the treatment.

Friday’s meeting was the first opportunity for me to put the case for a review on a face to face basis.

The meeting was amicable and not unproductive.  It was put to me that unless I could provide the organisation with evidence that some people need more frequent injections than others then the guidelines (and it was pointed out to me that they were just that – guidelines) would remain as they were.  It was made clear to me that, just like other aspects of healthcare, the guidelines for treating patients with whatever disease have to be based on scientific evidence not least because of the risk of any litigation claims.  That is why it is so important that we get started on the research that is already planned and financed into why patients’ needs vary.

There was one glimmer of hope, however.  I was told that if I can provide evidence that some doctors are prepared to treat the patient according to their individual needs then the wording of the current guidelines could be changed to include something like “the treatment can be varied according to the need of the individual patient”.  Again, it’s back to providing the evidence which is what I will now work on.

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