December 2017 – Volume 2 Issue 13
In this Newsletter:
CHAIRMAN’S REVIEW OF 2017
If I was asked to choose what the highlight of my year was you might expect me to pick out my Investiture at Buckingham Palace in April. Well, no doubt it would have been if it hadn’t been for the exciting invitation to speak at the 11th International Conference on One-Carbon Metabolism and Homocysteine held in Aarhus, Denmark in May.
The conference is held every two years and I have attended the previous two events that were both held in Nancy, France, but only as an exhibitor. This was an opportunity to present the patient’s perspective on B12 to an international audience of highly respected doctors and scientists all of whom are experts in some aspect of B12, Folate or Homocysteine.
Actually, there is a strange coincidence that links the two events – Buckingham Palace and Aarhus. During the whole of May, I only had one event scheduled in my diary and that was the four days for the Denmark conference. I had been invited before Christmas 2016 and so imagine my surprise when, in March, I received the date for my Investiture into the Order of the British Empire by Prince Charles. Yes, you guessed it, it was scheduled for one of the days of the Aarhus conference. I knew that the Investiture would be a once-in-a-lifetime experience but, there again, so would the opportunity to address top scientists on behalf of the society. I was torn but if I had to choose which event to go to I know which one would have won. In the event there wasn’t a problem. I telephoned Kensington Palace and told them of my dilemma and they changed the date from May to April which meant that Prince William would be in charge of the event.
I have already been asked to speak at two more conferences in 2018 and hopefully the message of how the problems with the diagnosis and treatment of Pernicious Anaemia is slowly but surely getting through.
Thank you to all our volunteers and Trustees who have supported me throughout the past year. And thank you for your continued support both morally and financially. Next year is the start of our three-year plan to expand the society and hopefully secure funding so that we can employ some part time staff to meet the ever-increasing demands on the society’s services.
Finally, as the snow falls on the roof of my conservatory where I am writing this piece, I would like to wish all of you and your families a Merry Christmas and a Happy New Year, or, as we say in Wales, Nadolig Llawen a Blwyddyn Newydd Dda.
See you all next year!
Martyn Hooper MBE
NICE CALLS FOR EVIDENCE
Following on from a letter, and then a telephone interview, the society has been asked to provide the National Institution for Health and Care Excellence (NICE) with evidence that there is a need for the highly respected institute to issue a set of Guidelines on Pernicious Anaemia.
This is a significant development as it means that the society is getting close to our single most important aim – to get the way in which Pernicious Anaemia is Diagnosed and Treated thoroughly reviewed. And it will also be a milestone in that NICE will be producing a set of Guidelines for the first time; this is because, contrary to what is commonly believed, NICE has never issued any guidelines for PA though they do have a Clinical Knowledge Summary of the disease.
NICE has made it clear that, because producing a new set of guidelines is expensive (around £750,000) and will take around three to four years to complete, we must convince them that it will be financially beneficial for them to conduct the review that will lead to the new standards followed by doctors. We know that many of our members waited years, sometimes over ten years for a diagnosis, and we can use the data from our survey to produce the evidence that NICE need. Fortunately, we have a volunteer who is a Statistician who is collating the evidence and producing a monetary value that will hopefully convince NICE that the three quarters of a million pounds outlay will be more than made up for in the unnecessary time taken by patients in wasted GP visits along with the cost of secondary tests such as MRI scans.
We are hopeful that the pro-forma report will be ready in the first week of the New Year though we need to ensure that our figures stand up to robust analysis and so we are determined not to rush things but make sure that what we present NICE with is as accurate as possible.
LATEST ROUND TABLE LUNCHEON
On Friday 8th December, we hosted another one of our Round Table lunches for doctors, scientists and other health professionals who are engaged in research collaborations with the society. We are currently working on seven research projects including ones that involve Biochemistry, Psychology, Medicine Development and Juvenile Pernicious Anaemia. Fifteen researchers or potential researchers were at the lunch held at the Royal Society for Medicine and for the first time we now have a Paediatrician and Psychiatrist as collaborators and we look forward to working on more research projects in the future.
We would like to thank all of our research partners for their continued support but more especially we would like to thank those members who volunteered to take part in the projects – without you we wouldn’t be able to recruit participants for these important ventures. Please check the website regularly or subscribe to the latest news at the bottom of the page to be aware of any new research projects recruiting participants.
Our Support Groups
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.
Find out where we have support groups and when the next meetings are:
No group in your area?
Why wait? – Start your own group
“Every time I have a support group meeting I wonder why on earth I waited so long to set one up. Admittedly we’ve only had two so far, but each time I come away feeling grateful for the mutual support and more than a little emotional after hearing everyone’s stories. I would urge anyone thinking about setting one up to just go for it. It doesn’t matter how many turn up, whether it is two or twenty, I am sure you will feel similarly uplifted by the experience. On-line support of fellow sufferers has it’s role, but there’s nothing to replace having a cuppa and a biscuit with someone fighting a similar battle and receiving – or giving – support. If it helps, find someone nearby to do it with. That way you know you won’t be alone, and you can motivate and support each other. In short, to quote a well-known sports goods manufacturer – just do it! I know you won’t regret it!”
Louise – Joint organiser of the Somerset Support 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 or apply to become a coordinator just send us an email.
HELP OUR CAUSE BY FUNDRAISING
It’s nearly that time of year where we make New Year resolutions. Why not make your resolution to Fundraise for the Society?
There are lots of different ways to do this, and here’s some help on how.
Create a Fundraiser page on JustGiving.com by using the following steps:
- Go to our page on JustGiving and click the orange button ‘fundraise for us’
- Setup a user profile or log in
- Create a Fundraising page (see the ‘how to’ here for more help)
- Add a photo, your story and set a target (see also this page)
- Tell everyone by sharing your page
- Send us an email and we’ll help you create some buzz and support you in any way we can
You can make a page for any of the following occasions:
- An organised event such as a half, or full, marathon
- A personal occasion such as donations for birthdays, parties, christenings etc
- In memory of someone
- A personal challenge such as a head shave, a sponsored event, etc
You may wish to simply donate to the society and this can be done on justgiving or just click the ‘donate’ button on this page. You can give a one off donation or a regular monthly contribution.
For other ways you can help us raise funds see our Fundraising page
Help us raise funds and get donations to continue research, campaign for a better diagnosis and treatment and support those affected by this condition. No matter how large or small, everything helps!
NEW MASTER OF SCIENCE PAPERS AND A NEW DOCTOR!
From the beginning of September, no fewer than three MSc degrees have been awarded to post-graduate students on different aspects of Pernicious Anaemia. One was on the Future Treatment using B12, another was on the stigma that patients with PA encounter when dealing with medical professionals whilst a third was on the problems with the current treatment. And congratulations to Dr. Lenira Semedo on successfully completing her PhD on Measuring Wellness in Pernicious Anaemia.
All of the graduates have asked us to pass on their thanks to all those members who helped them in their work.
STILL WAITING TO HEAR FROM THE BNF
You may remember that we told you about a report we submitted to the British National Formulary (BNF) on the problems with adequate treatment faced by many of our members. The report, written by Dr. Nicola Ward, was submitted in the middle of the summer and the editor of the BNF told us that we would be contacted in the autumn. Well, the autumn came and went and we haven’t heard anything but whether or not that’s a good thing we don’t know. We were told that, if the BNF guideline on treating Pernicious Anaemia was to be changed (we want it to revert to an injection prescribed every month as it used to be), then there was an established pathway that would have to be adhered to and it would likely take many months as the proposal was discussed in various committees. As the BNF are now accredited by NICE they are supposed to consult with any group representing the interests of patients when contemplating any change to the content of the booklet – which is us. And we know that the BNF is taking our request seriously, so perhaps no news is good news. We hope to have some good news by the time of the next newsletter.
WANTED – INTERVIEWEES FOR DOCUMENTARY
If you have a particularly interesting story relating to the way in which you were diagnosed and treated then we’d like to hear from you with the intention of filming you for our new documentary. But we don’t just want negative stories although there are likely to be a great many of them; we also want positive stories of how a particular doctor has helped you get diagnosed and treated properly, or how the society has been of help to you in the past.
If you are prepared to be filmed and have an interesting story please get in touch using email@example.com
Please write a brief description of your experience and include a telephone number that we can use to contact you along with a day and time suitable for us to call you. Remember we can only call during the hours of 8-12 Tuesday, Wednesday, Thursday and Saturday. Please note that as there is likely to be a high response rate to this request it may take some time for us to get back to you.
This year we have represented members at five separate tribunals. Two of these were to do with Employment issues (the members were struggling at work due to the ever-present symptoms of PA) and three were to do with Benefit Appeals.
As well as these appearances where we can give the tribunal panel a wider view of the daily problems faced by patients with Pernicious Anaemia, we have also submitted letters of support to three other professional people struggling to keep their careers.
If you are having difficulty coping with your work or career please get in touch with us at the earliest opportunity so that we are behind you from the start and involved at the earliest opportunity. We really can make a difference and we don’t charge for this service though we might ask for a donation to cover any travelling costs. What is important is that we are involved right from the start so that we can not only liaise with legal teams and trades union representatives but we can also advise those representing you.
NEW B12 INJECTION SERVICE LAUNCHED
We have been contacted by Blue Horizon Medicals Ltd who inform us that they have launched a new service aimed at patients with Pernicious Anaemia who need more frequent injections but whose doctor won’t recognise their individual need.
The Press Release says:
‘We are delighted to announce the launch of a nationwide Vitamin B12 intramuscular injection service, delivered at home. As far as we are aware, no such service yet exists in the UK, and we hope this new service shall fulfil a long-awaited need for those who cannot prove a medical reason for needing B12 supplementation, or who may be unable to access regular or more frequent B12 supplementation via the NHS’.
This is a welcome development for those patients who need more frequent injections but are, quite rightly, suspicious of any online pharmacies supplying injections. However, the service isn’t cheap. It will cost £79.15 per injection which will be delivered by a qualified contract nurse in your home using filtered needles to minimise the risk of glass fragment contamination which can happen with glass ampoules.
We do not endorse this new service, we would much prefer that doctors tailor any treatment regimen around the individual need of the patient, but we thought we’d make you aware of this development.
If you are interested you will be asked to complete an online self-declaration form and a consent form. The forms will be checked by one of the doctors at Blue Horizon who will authorise the procedure be carried out only if he or she is satisfied everything is in order. There is no limit on how many injections you can have.
Blue Horizon go on to say:
‘We recognise there is a need for safe administration of B12 in the community. The preparation we use is the same as that used by our medical director (and many other GPs in the UK) in his NHS practice, and is sourced from the same distributor. At £79.15 per procedure, we believe we are offering a fair price, most of which represents the cost of the bespoke home visiting service’.
If you are contemplating using this service we STRONGLY ADVISE YOU TO DISCUSS THIS WITH YOUR DOCTOR BEFORE PROCEEDING.
Orders can be made on line at www.b12horizon.co.uk
or by telephone on 0207 125 0523.
Give yourself the gift of giving and make a difference for everyone with Pernicious Anaemia.
The most common complaint received by the Pernicious Anaemia Society relates to the treatment of the disease.
It is time for the ‘one-size-fits-all’ treatment to be reappraised.
This conference will highlight the Good, Poor and Unacceptable Treatment encountered by patients with Pernicious Anaemia.