O ALAMIN NEWS - Pernicious Anaemia Society · research team will have. How are you feeling? Dr Heidi Seage of Cardiff Metropoli-tan University would like to know how Pernicious Anaemia
This document is posted to help you gain knowledge. Please leave a comment to let me know what you think about it! Share it to your friends and learn new things together.
Transcript
COBALAMIN NEWS
"I wanted to become an
Ambassador for the
Pernicious Anaemia Society,
because I've felt increasingly
frustrated and annoyed by
the 'under-diagnosis' of PA,
mis-diagnosis of symptoms
and the dissatisfaction of pa-
tients regarding their Vit B 12
treatment schedules.
I will endeavour to make a
difference here, although it
will be a slow process... but
slow progress is better than
no progress.”
Dr Chris Steele MBE
In this issue The patient’s perspective
10 year anniversary plans
Research news
Get togethers
Treatment updates
Volunteers needed
PASCOC Chair, Martyn Hooper presenting at the recent Parliamentary reception
Introducing our New Ambassador
We are delighted to announce that Dr Chris Steele MBE is now an Ambassador
for the Pernicious Anaemia Society (PASOC). Dr. Chris, a GP with over 35 years’
experience, has been the resident doctor on ITV's ‘This Morning’ daytime maga-
zine show since its launch in 1988.
After listening to PASOC Chairman Martyn Hooper present at Thyroid UK’s confer-
ence in October, Dr Chris later met with Martyn and offered to help in any way he
can. “I am delighted that Dr Chris has agreed to be an ambassador for the socie-
ty” says Martyn. “His reputation, experience and contacts will help the society
raise its profile not only amongst medical professionals but also to the general
public and media”.
Volume 2 Issue 4 May 2015
Know a group of medical professionals who would be interested in finding
out how the new guidelines affect patients? Contact the society and we can
make arrangements to deliver the presentation.
The patient’s perspective A new presentation produced by the society puts across the patients’ perspective
on the new Guidelines on Cobalamin and Folate that were produced by the British
Committee for Standards in Haematology (BCSH).
Aimed at medical professionals, the presentation utilises the findings from the
society’s survey of members published in April 2014 to illustrate how the problems
with the diagnosis of B12 Deficiency that are addressed in the new guidelines have
an impact on patients getting a quick and accurate diagnosis.
While the new guidelines acknowledge the failings of the current test to determine
the B12 status of patients and the inadequacy of the test for intrinsic factor antibod-
ies it is this society that knows how these failings affect our members.
New treatments for B12 Deficiency have been developed in response to patient
demand. However, these are not available on the NHS which still relies on injec-
tions to correct any deficiency caused by Pernicious Anaemia and the new Guide-
lines favour this form of treatment to others.
Other treatments available at health stores and elsewhere include sub-lingual
sprays, sub-lingual lozenges, nasal sprays, skin patches and high potency tablets.
If you are experiencing a return of your symptoms before your next injection is due
but your doctor refuses to increase the frequency of your injections you may want
to discuss using these different delivery methods with your doctor to supplement
your injections.
The best way to do this is to purchase your preferred method of supplementation
and take this along to the next appointment you have with your doctor so that he
or she is fully aware of what you are considering doing. The efficacy of these
treatments has not been fully evaluated but many members report that they do
help them manage their condition better but be sure to discuss this with your doc-
tor before you start any supplementation.
Research update Jab frequency
The research team that is looking
into why some patients need much
more frequent injections than others
have finally received medical ethics
approval and the programme is
about to begin. Members who have
already registered to take part in
the programme need do no more.
Your details have been sent to the
team and we will contact you if you
are selected to take part in the re-
search.
Fine on 12-weekly jabs?
We need to hear from you!
If you do not experience a return of
any symptoms before your next 12
weekly injection is given please
register for the programme.
Simply go to the link on the homep-
age of the website—if you haven’t
already! The more participants that
are registered the more choice the
research team will have.
How are you feeling?
Dr Heidi Seage of Cardiff Metropoli-
tan University would like to know
how Pernicious Anaemia is affect-
ing your wellbeing. Complete her
short questionnaire you can access
via the members’ area of our web-
site.
Help us help you: Research projects are a vital way of improving the way Pernicious Anaemia is diagnosed and treated. Visit the website to find out more
Fundraising for research driving improved testing and treatment for PA sufferers
On no account should you stop receiving your injections
The Thames Path Challenge Thank you to Jessica Sandi who will be taking part in The Thames Path Challenge on 12/13 September. We are very grateful to Jessica for doing this. We are still run purely by volunteers and with a constantly growing membersip, funds have be-come more and more important, not only to keep the basic website run-ning, meetings, telephone and email support service, etc but also to help fund research and campaign for better treatment and diagnosis. It would be fantastic if anyone wanted to show their support in the way of donations to Jessica. See what Jessica is doing here and donate.
The Pernicious Anaemia Society was formed in 2006. It is based in Bridgend, south Wales in the UK. It is a registered charity (No. 1147839) and is a limited liability company (Reg. no. 07904047). Overall responsibility for the so-ciety rests with eight trustees. The society is run entirely by volunteers. Day to day decisions are made by the Executive Chairman. The Pernicious Anaemia Soci-ety, Level Four, Brackla House, BRIDGEND, Wales, CF31 1BZ UK Tel: +44(0)1656 769717 Main Contacts Executive Chairman
Are you an experienced corporate fundraiser or skilled at database analysis? We want to ensure the society is ‘Fit for the Future’ and need your help. If you can spare even just a little time please call for a chat to see how you can make a differ-ence.
Got other skills you think can help the society? We’d love to hear from you too!