Autmn 2018 – Volume 2 Issue 16
WE’VE DONE IT!
Today (17th October) we received an email from the Director of Guidelines at the National Institute for Health and Care Excellence (NICE). They have been formally requested by NHS England to produce a Guideline on the Diagnosis and Management of Pernicious Anaemia.
This decision fulfills the main aim of the Society which was to get the way in which Pernicious Anaemia is diagnosed and treated thoroughly reviewed. The NICE Guideline will hopefully achieve this aim.
“When we embarked on our mission to get the problems with the diagnosis and treatment of Pernicious Anaemia thoroughly reviewed it was obvious that we would have to work with Health decision makers to achieve our aim” says Martyn Hooper, Chairman of the society.
“Thankfully there is an organisation in the UK which would provide the means to bring about that review”
“It has been twelve years since the society was registered as a charity and in those twelve years we have provided information, advice and support to our members on a day-to-day basis. But always in the background was the work to get the problems with the diagnosis and treatment thoroughly investigated. We have worked with the team of professionals at NICE to ensure that our request was taken seriously, established relationships with decision-makers and provided evidence and other information when asked” he says.
It will take NICE more than three years to produce the Guideline, and, because NICE is patient-centred the society will play an active role in the formation of the new Standard. As well as involving patients in the process, academics, medical professionals and clinicians will all be invited to contribute.
“We have an enviable list of contacts who are experts in their fields and who form our ‘round table’ of professionals” says Martyn. “These contacts will be passed to NICE who will invite them to take part in the formation of the Guideline.”
This is a serious development which will hopefully reduce the time taken for patients to be diagnosed and ensure adequate treatment. We would like to thank all of those who have supported us over the past years! We’ll keep you updated on the development process.
We have been fortunate in our application to hold a Parliamentary Reception at the House of Commons where Members of Parliament will be able to hear about the problems with the diagnosis and treatment for Pernicious Anaemia.
The Chairman of the Pernicious Anaemia Society, Martyn Hooper MBE will be giving three presentations in The Jubilee Room of the House of Commons on Thursday November 1st. The first presentation will be at 12 noon, the second at 12:40 and the third at 1:20.
We want to ensure as many MPs as possible attend one of the presentations and so we are asking you to contact your MP and ask him or her to attend the event.
You can print out a letter template and there’s an invitation that you can print off as well. If you are unsure who your MP is please look on the They Work for You-website and enter your postcode to find out the contact details of your MP including their email address which you can use to request their attendance at the event.
Please don’t rely on someone else in your constituency to invite your MP, please make the effort to contact him or her yourself.
There are likely to be some important developments in the way in which Pernicious Anaemia is diagnosed and treated in the next few months and we want to get the support of as many MPs as possible.
Martyn’s presentation will last twenty minutes and will concentrate on how the poor diagnosis is not only costing millions of pounds every year but also causing patients to suffer often years of misery. Similarly, the ludicrous problems with treating, or in some cases not treating Pernicious Anaemia will be highlighted. After the 20 minute presentations MPs will have the opportunity to ask questions.
If you haven’t already done so please contact your MP by letter, email or telephone to get him or her to attend the event.
First some exciting news on the findings of the team looking at why some patients need more treatment than others. We are now sponsoring a MSc student at the University of Kent who will be building on the findings of the team that we reported in the last newsletter. Over the past few years we have received a number of donations and legacies that have been granted solely to fund research. When the opportunity arose for us to fund further research (that will build on those original surprise findings), we agreed to meet the tuition costs of the student to ensure that further work can go ahead straight away. The Professor that uncovered the difference between those who need more frequent treatment to those who manage perfectly well on 3-monthly injection will be supervising the MSc student.
Secondly, we are involved in a new emerging research team that is based in Bangor University’s Medical School. This programme will be asking “Is Pernicious Anaemia being adequately treated from the Patients’ Perspective”. This is very encouraging as the team, that includes three doctors and a Professor of General Practice, will be looking at the treatment from the patients’ perspective. This is much needed research that will mean other research that we have been involved with will be taken into consideration. These other research outcomes include Stigma among Medical Professionals and PA and the results of the survey of patients who are forced to self-treat. The next meeting of this new research team takes place in the second week of November.
VIRGIN LONDON MARATHON
We were successful in our application for a Silver Bond place for next year’s London Marathon. Three members have asked if they could run the marathon on behalf of the society and at the top of the list was Elise Dyer who is originally from the UK but who now lives in the Southwest of France. Elise will be running for us next year and has already started her training. Please help Elise to raise her target of £2,000. We will apply for more entries next year to please those others who are patiently waiting on the list. Read her story and how to sponsor her in on of our latest news posts here.
THE CARDIFF HALF-MARATHON
“We couldn’t believe how many people came up to us and told them that either they, or someone they knew had Pernicious Anaemia”.
That’s what the four runners in this year’s Cardiff Half Marathon told us after they successfully completed the course.
The ladies, all from Rhondda Cynon Taff, heard about the society and asked for running vests so that they could raise awareness of the society.
A big thank you to: Jodi Stevens, Karen Prosser, Allison Darcruz, Vicky Stevens! Read the full news post here.
We are tremendously grateful for all those who make particular efforts to raise money for the society. Sky-divers, Marathon Runners, Bake-Offers, Walkers and Swimmers have all helped raise much-needed funds for the society. Please let us know if you would like to participate in any event and would like a t-shirt or running vest to help raise awareness amongst the general public. You can also get yourself sponsored whilst raising awareness and fundraise for the Pernicious Anaemia Society.
Check out what others have done for the Society and how to start your own fundraise event or if you want us to promote your event on our Fundraising Page.
NEUROLOGICAL ALLIANCE PATIENT EXPERIENCE SURVEY
We know that many of us had to wait several years to receive an accurate diagnosis of why we felt so unwell. And we know that delayed diagnosis and treatment can and does lead to serious and irreversible nerve damage. We are working hard to raise awareness among Neurologists that many of the patients that they see may have Pernicious Anaemia that is undiagnosed. And part of this process involves the Neurological Alliance which the society is part of.
Now the Neurological Alliance is conducting a survey of patient’s experiences. If you have been unfortunate to have developed any neurological damage please consider taking part in the survey. Read more about it and complete the survey.
We want to say a great big thank you to all of you Silver members who have decided to carry on with their membership and renew their annual subscription of £10. These regular membership fees have made an enormous difference to our income and has meant that we are able to face the future with confidence. So, thank you Silver members!
And thanks, as well, to all those who give regular small, and some not-so-small monthly donations. If you haven’t already set up a small monthly donation please consider doing so by clicking the button at the top or bottom of the page.
Get involved and Volunteer!
In order to continue to provide the services that we do and grow to meet the needs of patients in the future we need funds. We are now very keen to recruit a volunteer Grants and Bid writer who can help us meet the challenges of the future. If you are an experienced Grant and Bid writer and can spare time to apply for large grants on behalf of the society we would love to hear from you. Or maybe you know someone who is experienced in this highly specialised work who would be able to help the society. If you have a background in writing bids, or know someone who would be happy to help us, please get in touch.
To increase our so much needed member support we are looking for a Members’ Service Manager. Ideally you would be living near our office in Bridgend, but it is also possible to work from your home. Do you have a very good knowledge of Pernicious Anaemia and all that’s involved and/or experience with phone/email support and would you like to help our members with advice and support?
New Support Group
A new support group was started by our member Mandy in West Wales. News about the 1st meeting will follow soon! Interested to join? Email Mandy via the details on the Events page.
OUR SUPPORT GROUP NETWORK GROWS
We’d love to expand our network of local support groups. The society can help by emailing an invitation to all members within a certain geographical area and promoting the event on our website and social media, but it takes someone special to find a suitable venue and organise refreshments etc. If there isn’t a Support Group in your area you may want to think about starting one up.
You may remember that we have twice reported the office being flooded. This is because there is a problem with the roof. As we occupy one half of the top floor of Brackla House we are the first victim of any roofing problems. Last year an attempt was made to rectify the problems but following more flooding in the spring the landlords have been forced to carry out major alterations and repairs to the roof of the building which has meant we have temporarily vacated the office for safety reasons. We do not expect to return until early 2019. All telephone calls have been re-routed to a mobile telephone for the duration. Our postal address is unaffected by the work taking place and we check our post-box daily.