March 2018 – Volume 2 Issue 14
In this Newsletter:
NICE CONSIDERS DEVELOPING A GUIDELINE FOR PA
In the last newsletter we told you about us being contacted by the National Institution for Health and Care 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.
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.
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
We submitted a Review of Current Treatment to the British National Formulary (BNF) last summer. The Review, written by Dr. Nicola Ward was in response to a request from the BNF who recommend 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.
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.
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.
This society is proud of its links with researchers both past and present. There are two elements that we can help researchers with. Firstly we can Raise Awareness of the need for a particular aspect of Pernicious Anaemia that needs to be addressed from the patients’ perspective. Secondly, we can help recruit participants.
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.
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.
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.
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
Give yourself the gift of giving and make a difference for everyone with Pernicious Anaemia.
The next meeting of the ever-popular South Wales Support Group will take place in the society’s offices in Brackla House, Bridgend on Saturday 25th August from 10am until 1pm.
There’s been a great deal of activity that we need to update you on, and you get free tea, coffee, soft drinks and snacks.
Updates on Folic Acid Fortification, GP’s Study Day, Self-Treatment Research Programme and the remarkable findings of the Gut-Bacteria Research will be given.
Please let us know if you would like to attend. These meetings are a great way to meet fellow sufferers and make new friends – and remember it’s all free.
We look forward to meeting you again!
Do you have, suspect you have, or support someone with Pernicious Anaemia?
Feeling Alone? Isolated? Confused?
We offer a welcoming and friendly environment where PAS members share experiences and support each other with what can be a difficult and complex condition.
If you require further information, would like to attend a meeting, or join the support group, please email email@example.com.
Meetings are held at Ulverscroft Manor, Priory Lane, Ulverscroft, Leicestershire, LE67 9PH, and are jointly hosted by the Pernicious Anaemia Society and the Shuttlewood-Clarke Foundation.
The support group also welcomes PAS members from Nottinghamshire, Derbyshire, and surrounding areas.
The PAS Somerset Support Group meeting will take place at 10am on Saturday, 8 September at The Old Deanery, Wells.
Member Support Groups are an excellent way to relieve the feeling of isolation that patients feel and they provide the opportunity to hear how others are dealing with their condition.
Do come along and join us, and other other members of the society for a chance to share your experience of living with Pernicious Anaemia in a supportive and friendly environment.
To give us an idea of numbers please email the organiser if you are interested in attending.
In response to requests from our members in Northern Ireland we have arranged a Get-Together for members on Saturday 22nd September at 10am – 1pm in the Dublin Room of the Europa Hotel in the centre of Belfast.
These events are an excellent way to meet other members of the society and learn of how PA has impacted on their lives and how they have developed coping strategies to deal with the ongoing symptoms.
There are a limited number of places available and so you will need to register for the event by filling in the form below.
Those living in the Republic of Ireland are also welcome to attend.
The event is free, and there will be tea and coffee on arrival.
The Chairman of the Society, Martyn Hooper MBE will give a talk on all of the latest developments in the research programmes being undertaken along with other news.
If you would like to come along please let us know by registering below.
We look forward to seeing you!
Martyn Hooper MBE (Chair of the Pernicious Anaemia Society) will be our guest speaker at the first West Midlands Support Group Meeting on the 29th of September.
We offer a welcoming and friendly environment where PAS members share experiences and support each other with what can be a difficult and complex condition.
Do come along and join us, and other members of the society for a chance to share your experience of living with Pernicious Anaemia in a supportive and friendly environment.
Please email the organiser if you are interested in attending or if you would like more information.
The Beacon Centre
Wolverhampton Rd, Dudley, Wolverhampton WV4 6AZ, UK
Tea, coffee and biscuits will be provided by the coordinator.
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 firstname.lastname@example.org email address or telephone the office between 8am and 12 noon on Tuesday, Wednesday, Thursday and Saturday.
MORE TESTS FROM VIAPATH
The laboratory based in St. Thomas’ Hospital in London has informed us that they now have added a series of test packages to their portfolio. We are pleased to make our members aware of these products but BE AWARE that your GP may not be able to interpret the test results as most are unaware of ‘Active’ B12. We do not in any way endorse or recommend these products but are happy to make you aware of them. As always your doctor is the best person to advise you, and you may want to discuss these tests with him or her before going ahead and ordering them. Here’s what Viapath told us:
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.
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 email@example.com 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.
The society is now, once again, a fully functional member of the Prescriptions Coalition. The Prescriptions Coalition is an umbrella body of over 40 charities that represent patients who have a long term health condition and rely on prescription medicine to allow them to live with their disease. In England, though not in Scotland, Northern Ireland or Wales, patients who are prescribed their B12 injections have to pay £8.60 for the vials. We are aware that more and more surgeries and health centres are now writing prescriptions for patients who keep the vials at home and take them with them when they attend their clinic for a nurse to administer the injection. Most patients with Pernicious Anaemia simply turn up for their injection with no cost involved but more and more we are hearing of patients being given a prescription that they then have to pay to have filled. For more information about the Prescriptions Coalition please follow the link below and consider signing their petition:
EMPLOYMENT APPEALS & EDUCATION APPEALS
We are getting more and more requests for us to appear as an ‘expert witness’ in employment disputes and education-based hearings. Whilst we do not charge anything for appearing we will now have to ask for our travelling and subsistence expenses to be met. If any trades union is involved then the expenses will usually be met by the union.
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
So how do you set up your own local group? Apply to become a coordinator, find a suitable venue, set a date for a meeting and keep in touch with your members via email. We’ll publish your meetings on the website, social media and let members in your area know when there is a meeting with an email. To find out more about what’s involved please see the information on our Support Group Page or apply to become a coordinator by sending us an email.
HELP US HELP YOU AND DONATE
We are run entirely by volunteers and do not employ anyone. But that doesn’t mean that we don’t have expenses to meet every month. Travelling costs, telephone line rental, electricity, office consumables etc. all have to be paid for. And that’s why your small regular monthly donations are so important to us. We want to say a great big thank you for all of you who have already made a small standing order or regular monthly donation to ensure we keep on doing what we do. If you haven’t already made a small donation please consider doing so.
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.
We are always grateful for the efforts of those who complete events to raise funds for the society and we are genuinely surprised by some of the activities you get up to. However, it’s often the case that the first we hear about any fundraising that has taken place is when we receive notification of payment. Please let us know if you are entering an event to raise funds for the society. We are happy to support you by publicising the event to increase support and we can also provide you with t-shirts or running vests that have our log on and we have posters that can advertise your event.
Claire is the volunteer who looks after those who are fundraising for us and she can be contacted via email: firstname.lastname@example.org
BECOME A PAS TRUSTEE
Do you have a special talent or experience that could be used to help run the society? If so perhaps you might consider becoming a trustee of the charity. The Trustees are responsible for ensuring that the charity is carrying out its purposes for the public benefit and that we comply with our governing document and the law.
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.