NICE GUIDELINES UPDATE
One of the objectives of the Pernicious Anaemia Society is to try to get NICE to thoroughly review the way in which Pernicious Anaemia is diagnosed and treated. As the representative of a reputable patient support group, one of the ways the Chairman seeks to continue to do that is to fulfill a role as a Registered Stakeholder for NICE. In addition to continuing to fight for a new guideline on Pernicious Anaemia, the chair has also been able to comment on the latest Guideline on Neurological Conditions, feeding back on the role of B12 being a cause of peripheral neuropathy, the risk of sub-acute combined degeneration of the spinal cord and more. He also made further comments on the new Guidelines on Psychosis and Schizophrenia.
A NEW ALLIANCE
We know that there are serious failures concerning the tests used to diagnose Pernicious Anaemia. And we also know that patients face a long journey before they are eventually told the reasons for their symptoms – 33% waited over ten years before being diagnosed. Left untreated Pernicious Anaemia can and does lead to nerve damage which leaves the patient permanently disabled; some seriously so.
In our bid to raise awareness among medical professionals of the potential for neurological damage as a result of Pernicious Anaemia we have joined the Neurological Alliance, an alliance of over 80 professional and patient support groups that are concerned with diseases of the nervous system. We have yet to attend any meetings or seminars but when we have we will update you on any progress being made.
The next few months offer multiple informal opportunities to meet fellow Pernicious Anaemia Sufferers to share experiences and receive support.
Join us at our regional get-togethers in London on Saturday, 21 October and Edinburgh on 11 November. Spaces for these events are limited so please reserve your place here for London and here for Edinburgh.
Forthcoming Local Support Group meetings include Gloucester on 23 September, Somerset on 7 October, Wiltshire on 14 October and south Wales on 18 November.
For more information on all these events click on the Events on the right side of this page or via the menu.
Tell Us How We’ve Helped You
The society keeps on growing, not only in terms of members but also in how we are able to influence decision makers and health professionals. We are now regularly being asked our views on various topics; and doctors are increasingly seeking our views regarding diagnosing and treating patients.
As we grow we need more funds and we are busy applying for grants to allow us to employ part-time professionals who will help us to meet the increasing demands for our services.
One of the main things that grant-makers want to know is how we make an impact on the health and everyday living of our members.
Please take a few moments to tell us how we have helped you. It may be that you printed off our leaflets to give to your GP or other health professional. It may be that we spoke to your doctor or employer or teacher which has helped your everyday life or perhaps you’ve attended one of our local support groups or conferences.
Your help will be greatly appreciated and will help us achieve our medium-term goals.
And the prize for the most novel fundraiser for the society goes to McLean McIntosh, who is organising a Zombie Blood Bath at Forth Valley College where he works. The whole college will be taking part in the event, planned for March 2018. We can’t wait for the photographs!
AND THANKS TO…
Gold Member Rhona Bell who successfully completed the 96-mile West Highland Way walking route – raising £675 for the Pernicious Anaemia Society in the process.
Also to Emma Stoker who raised over £200 by hosting a bake sale at her employers, BAE Systems.
If you plan an event to raise for the society please have a look at our Just Giving page and get in touch and we will send you some materials to help with promotion. As a small charity, such events provide vital funds which will support our work in promoting the need for the way in which Pernicious Anaemia is Diagnosed and Treated to be thoroughly reviewed.
We want to know what the benefits are of self-treatment in patients that have been diagnosed with Pernicious Anaemia in the UK. Please share your experiences with us by completing our short survey. The data collected will be analysed by professionals working in healthcare settings and will be published in a peer reviewed journal and help us raise awareness of the need to improve treatment for Pernicious Anaemia suffers.
This survey is for PAS members who self treat (as the only treatment or in combination with treatment from a healthcare professional), are aged 18 years or older, have been diagnosed as having Pernicious Anaemia by a healthcare professional and live in the UK. All information provided by you will be kept strictly confidential and participants will remain completely anonymous.
Thank you for participating!
Registered reflexologist Candace Nicholson is looking for people to take part in a study looking at the effect of foot reflexology on the symptoms of Pernicious Anaemia.
Candace explained, “There are existing research studies supporting the benefits of reflexology in the treatment of other auto-immune conditions, such as Multiple Sclerosis and Rheumatoid Arthritis, and knowing a number of people with PA who continue to experience symptoms despite receiving the NICE recommended treatments I was interested in studying this area for my university degree dissertation.”
The study is due to commence in October in the Cardiff area. She is looking for participants who have had PA for more than 12 months, and who receive the standard treatment of B12 injection once every 12 weeks. Due to the timing of the study, she is looking for participants who are due to receive a B12 injection in October/November 2017.
If you’d like to register or find out more, please email Candace.
Dealing with a death in the family is never easy and it is with sadness that we learned of one of our members passing away. We were grateful for the legacy left in the deceased’s will and it is good to know that there are members who consider us when drawing up their Will. If you would like to know more about leaving the society a legacy, no matter how big or small, please contact the Treasurer of the society, Mr. David Connell-Smith either by telephoning the office or emailing email@example.com
All such matters are treated in the greatest confidence.
ANNUAL GENERAL MEETING
The society’s AGM took place on Saturday 3rd June in the Burlington Hotel in Birmingham.
Two new Trustees were appointed and the meeting received a comprehensive report from the Executive Chairman Martyn Hooper MBE.
The medium-term goals of the society are centred around seeking funding to employ four part-time professionals to not only help the society to meet the increasing demands on its services, but also to expand the network of support groups, counselling and advocacy services and general administrative tasks.
The policies on Child Protection, Vulnerable Adults, Data Protection, Environment, Equal Opportunities & Welsh Language were all updated and adopted by the Trustees. The policies are updated every three years and the Child Protection Policy includes a set of procedures as does the Vulnerable Adult Policy including the names and contact numbers of contacts in case there is any issue.
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.