In this Newsletter:
NICE CONSIDERS DEVELOPING A GUIDELINE FOR PA
Excellence (NICE) and asked to complete a pro-forma application to formally request that NICE produce a much-needed Guideline on the diagnosis and treatment of Pernicious Anaemia. During November and December we contacted our ‘round table’ of healthcare affiliates which is comprised of doctors, health professionals and researchers and other scientists and asked for their comments on what should be included in the application.
Delighted
We were delighted with the suggestions and would like to take this opportunity to thank those who responded to our request. In January, one of our volunteers who is a statistician used the figures from our survey to produce a monetary value of how many wasted hours of GP consultations were caused by the current diagnostic process. We were able to calculate that at the very least, and in the UK alone, the cost of repeated and futile GP consultation runs to several millions of pounds every year. We submitted our request in the last day of January and it will now be debated in NICE’s next bi-monthly Review Panel.
Cost Effective
Given that NICE needed to be convinced that they need to spending £750,000 on a guideline would be cost effective we are hopeful that NICE will decide to go ahead and develop Guidelines as to how doctors diagnose and treat Pernicious Anaemia.
As soon as we know what the outcome of our request is we will let you know so please keep an eye on the News section of the website.
A list of NICE Guidelines currently being developed can be found here:
Guidelines in Development
BNF UPDATE
written by Dr. Nicola Ward, was in response to a request from the BNF (who recommended that maintenance treatment be one injection four times a year). The report showed that the treatment of Pernicious Anaemia used to be an injection once a month; this was changed to once every two months in 1974 and then to once every three months in 1984.
Treatment
There doesn’t seem to be any scientific basis for changing the treatment regimen and we want the BNF to state that treatment should be based on the individual need of the patient and, therefore, it should be for the patient and doctor to agree on a patient-centred treatment plan. We are aware that there are doctors who already do this, and we see this as examples of best practice, however, far too many doctors will not negotiate with their patient and will stick rigidly to the one injection every twelve weeks as stated by the BNF.
Frequency
The frequency of injections is still the biggest cause of complaint by our members – nearly 78% of telephone calls to the office are about what patients believe to be inadequate treatment. We heard from the BNF in January of this year stating that our report was now being considered. Hopefully we’ll have some more news soon.
RESEARCH
Las year three Masters Dissertations specifically addressed contentious issues associated with the diagnosis and treatment of Pernicious Anaemia. These include investigations into the Stigma amongst Medical Professionals towards Pernicious Anaemia, New ways to treat the disease and Managing Pernicious Anaemia – the patient experience, We have also helped recruit participants for programmes looking at how reflexology can help patients, along with two other investigations into the use of Reiki to help patients and whether patients benefit from acupuncture.
We are now busy developing a new online form where members who are interested in taking part in research proposals can register their interest. Please keep a lookout for this new facility over the next few weeks.
New Research
Childhood Trauma & Autoimmune Diseases
We have been contacted by a researcher at the University of East London who is conducting research into autoimmune and rheumatic diseases and childhood trauma. She is interested in exploring whether there is a link between these two and has developed an online questionnaire to collect data.
To take part in the programme please complete the questionnaire here
Genetics of Pernicious Anaemia
There is an exciting development in the investigations into the genetics of Pernicious Anaemia. Although this has taken a year for the project to be designed it seems it is now making good progress and the research team is now in place. We are part of the research programme and will be recruiting around 200 members who have a firm diagnosis of Pernicious Anaemia and who have a family history of the disease to provide a saliva swab and maybe a small blood sample. This will be the second research programme we have taken part in that has looked at the genetics of PA but this one will be much bigger than the last.
Pin Prick Monitoring Test
This is in its formative stage but is a very interesting development. The researchers are producing a small pin-prick test that can analyse the serum B12 of patients within 10 minutes. This shows enormous potential for monitoring the B12 status of patients several times a day. We have been asked if we can help recruiting participants and demonstrating that there is a need for this development.
Ongoing Research
Abnormal Gut Flora
The programme that is investigating why some patents need much more frequent replacement B12 than others is now coming to an end. The frozen faecal samples that were kindly provided by the participants have now been sent off for evaluation. Results should be available in mid-May. The urine samples will be sent off for examination at the end of March.
Self-Treating
If you are one of the many members who self-treat themselves either with or without the knowledge and consent of your doctor we want to hear from you. We need to find out how you treat yourself and what form of B12 you use. The survey is only open for another three weeks so if you haven’t already done so please complete the survey by clicking here
How can you help?
We rely on donations to continue our vital work.
Every donation is gratefully received and helps us carry on our campaigning. If you have found our website or the society helpful please consider making a donation, no matter how large or small, everything helps.
DOCUMENTARY
The documentary is on hold for the time being as we await the outcome of our application for NICE to produce a Guideline on Pernicious Anaemia. However, we are still looking for members with an interesting story to tell – either of good or bad experiences so if you haven’t already done so please register an interest by contacting us using the in**@*******rg.uk email address or telephone the office between 8am and 12 noon on Tuesday, Wednesday, Thursday and Saturday.MORE TESTS FROM VIAPATH
As we know, there is no single laboratory marker which can reliably diagnose vitamin B12 status when used in isolation. Low concentrations of serum vitamin B12 are most often used to assess vitamin B12 status but this approach generates a high rate of false negative results. Patients with true vitamin B12 deficiency are therefore missed – in fact some research suggests that a serum vitamin B12 test used in isolation is little better than flipping a coin.
Viapath’s Nutristasis Unit at St. Thomas’ Hospital in London has worked hard over many years to develop and apply novel laboratory indicators of vitamin status. The Unit has had a longstanding focus on vitamin B12 and actively seeks to share the experience they have gained with other laboratories across the UK and beyond to support them in developing their own services. The founder of the Nutristasis Unit, Dr Dominic Harrington, had the privilege of being invited to speak at The Pernicious Anaemia Society’s tenth anniversary conference in Birmingham during December 2016.
Viapath’s Nutristasis Unit is often contacted by patients who are struggling to gain access to the laboratory tests that may help to detect deficient states or monitor status during treatment regimes. To meet this need the Nutristasis Unit has now made a selection of the tests they offer available through Viapath Nutris and full details can be found on their website.
ORAL TABLETS
We are aware that there are healthcare decision makers in the UK who want to stop treating the disease with injections and instead use high strength oral tablets as replacement therapy. We know that in countries where tablets are prescribed to treat Pernicious Anaemia, (including Canada and Sweden), most of our members in those countries continue to use injections and their doctors are happy to carry on prescribing them. However, as more and more people are diagnosed as having Pernicious Anaemia, the costs of providing the injections will escalate and those seeking to make healthcare savings will see the introduction of tablets as being a way of saving money. We, as a society, want to see a robust research programme to take place before any move towards oral supplementation is introduced. The current evidence that tablets are an effective treatment is based on small scale research programmes and no thorough investigation has taken place. Whilst we do have members who use tablets to treat their condition there are a great many others who tried using the tablets but were quickly moved back to injections when their B12 levels fell dramatically.The society believes that newly diagnosed patients should be given a choice of delivery methods to allow the patient to take part in their treatment programme. And remember, the Guidelines from the British Committee for Standards in Haematology state that injections are the preferred method of treatment as they are safe and extremely cheap.
We need to start building our case against any forced introduction of oral B12 and so we urgently want to hear from you if you were offered tablets but they didn’t work in that your B12 levels didn’t recover or indeed worsened. Please use the re******@*******rg.uk email address to let us hear your story. We will, of course, give you the opportunity to remain anonymous. Any supporting paperwork will be a welcome extra.
PRESCRIPTIONS COALITION
http://www.prescriptionchargescoalition.org.uk/
EMPLOYMENT APPEALS & EDUCATION APPEALS
Please note that we will continue to pay for all expenses when there is genuine hardship as we know how important these hearings are in improving patients’ quality of life.
Our Support Groups
Our network of support groups continues to grow. These group meetings are an excellent way of gaining an insight into how others manage their condition and are a great way of sharing information on treatments. If you are interested in starting a group in your area please contact the office. It takes a lot of commitment but once the first meeting is set up the time and effort involved becomes a lot easier.
Our current groups:
No group in your area?
Why wait? – Start your own group
HELP US HELP YOU AND DONATE
You can either:
– Click the ‘ Make a Donation ‘ button at the top or the bottom of the page and choose between one time donation or monthly and choose your amount.
– Set up a monthly standing order by printing out the form, filling in the details and return it to the address on the form
And remember to click the Gift Aid box if you are a UK taxpayer – doing so means we can claim an extra 25% from the UK government.
SPONSORED EVENTS
Claire is the volunteer who looks after those who are fundraising for us and she can be contacted via email: fu*********@*******rg.uk
BECOME A PAS TRUSTEE
Trustees meet four times a year, usually in Birmingham. If you can make a positive contribution to the future of the society by developing new services or activities we would like to hear from you. Please telephone the office during our opening hours. If there is nobody there to take your call please leave a message and someone will get back to you as soon as possible.