Overcoming Ignorance of Colitis and Crohn's Disease
Addressing public ignorance of IBD is vital and overcoming media sensitivity to discuss
the key symptom, diarrhoea, requires innovation. NACC spearheaded the launch of the new
Service Standards for the Healthcare of People with IBD, successfully addressed the lack
of a National Service Framework and secured access to anti-TNF maintenance therapy via
NICE.
Crohn's and Colitis UK and its consultancy Healthcare Solutions PR were runners-up
for the Healthcare & Pharmaceutical Award for its campaign Overcoming Ignorance of
Crohn's and colitis
Finalist: Hertfordshire Business Awards 2010 for the Business in the Community
category, and the only charity to reach the Business Awards final
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IBD: Sport and Fitness
In a year when sport has such a high profile as a result of 2012 Olympics we
wish to explore the sport and fitness habits of people with IBD through a new
membership survey.
We hope that by tracking and comparing
sports and fitness activity, challenge ideas and progress
(or lack of progress, for whatever reason) - we will get a
clearer view of IBD: Sport and Fitness issues, to promote
through the media during 2012 in order to improve
understanding and inspire others
Anyone concerned about Swine Flu can get more information from
the following sources: England and Wales: www.nhs.uk or the
Swine Flu Information Line on 08001 513 513 Scotland: www.nhs24.com
or NHS 24's dedicated flu line on 08454 24 24 24 Northern Ireland:
www.dhsspsni.gov.uk or the N.I. Swine Flu Helpline on 0800 0514142
Swine Flu and immunosupression
IBD Patients on standard doses of immunosuppressant therapy (azathioprine or
mercaptopurine) or anti-TNF therapy should not be exceptionally susceptible to Swine
Flu and are advised to continue with their treatment, as the risk of active IBD and
subsequent need for drugs such as steroids would carry a greater risk than that of
contracting the infection. However, you may wish to discuss your current treatment
with your Gastroenterologist or IBD Nurse Specialist to check whether your dose,
drug or recent blood tests indicate that you could be at higher risk.
If you are receiving an immunosuppressant and have a household
contact with flu you should consult your GP who may, in consultation with your IBD
specialist, suggest that you take anti-viral medication (Tamiflu) as a precaution.
(Current guidance from the Health Protection Agency on the use of prophylactic
Tamiflu can be found at
www.hpa.org.uk)
What to do if you think you have Swine Flu
If you have flu-like symptoms you should stay at home and call your GP immediately
for advice. Tell your doctor that you have IBD and about any medication you are
taking.
Early doses (within 48 hours of symptoms) of antiviral medicines
such as Tamiflu are thought to be effective in treating people with Swine Flu. There
is no known interaction between Tamiflu and standard IBD drugs, and it is not
thought to have any harmful effects on IBD itself.
If you are receiving anti-TNF medication (Infliximab or Humira)
you should phone your IBD Nurse or contact person if you have a fever or flu-like
symptoms as your treatment may need to be deferred.
Swine Flu vaccine
The Swine Flu (H1N1) vaccination is now available. Like the seasonal influenza A and
Pneumovax vaccines, the H1N1 vaccine is inactivated and considered safe to use even
in people whose immune system is compromised. There is also no reason why the swine
flu vaccine should adversely affect the state of your Crohn's Disease or Ulcerative
Colitis.
NHS Choice states that the priority groups for vaccination
include people between the ages of six months and sixty five years who are on
immunosuppressive drugs: these include prednisolone (in a dose of more than
20mg/day), azathioprine, mercaptopurine, methotrexate, infliximab and adalimumab.
Other members of your household may also be vaccinated if your immune system is
compromised.
Furthermore, it is recommended that people on immunosuppressive
drugs should receive not only the H1N1 vaccination, but also seasonal flu
vaccination and Pneumovax (which is to reduce the chances of getting bacterial
pneumonia).
We suggest that if you are on any immunosuppressive drug, and
have not had Swine Flu, you talk to your GP soon about having these vaccinations. If
in doubt about your treatment, it would also be sensible to contact your
Gastroenterologist or IBD Nurse Specialist.
Specific advice regarding swine flu is likely to change over the
next 6 months. NACC will therefore update the advice to patients whenever necessary.
CHRISTMAS CARDS
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Have
your ordered your Christmas Cards? It isn’t too late – yet!
By choosing our charity Christmas Cards you will you will be helping to improve life
for people affected by the devastating conditions
Forthcoming Events
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CAN YOU SPARE A DAY in MAY?
This year’s National Walk in London (Sat 26 May) still needs
lots of people to register to participate as walkers or volunteers.
Please don’t think that if you can’t raise any sponsorship, you won’t be welcome!
We’d love to see you anyway because by just wearing the T Shirt and walking with
other like-minded people you’ll be helping raise awareness of Crohn’s and Colitis.
Register online or call 01727 734485 for details
NEW! If you can’t WALK WITH US… then TALK ABOUT US (wear the sticker!) – for just £6
(+p + p) we’ll let you have one of our NEW! USB sticks loaded with a presentation,
posters and film about our 2012 theme – you can show this at work, at school or just
to friends and family to help raise awareness.
Crohn's and Colitis
Month is May 2012
Our theme for Crohn’s and Colitis Month is IBD Sports and Fitness and we
urgently need more media volunteers to tell their story about good or bad
experiences. (Click
here for details.)
Office Hours Christmas 2011
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During the Christmas 2011 and New Year 2012 period the Crohn’s
and Colitis UK Office and Information Service will be available as follows:
Information Service - 0845 130 2233
Fri 23 Dec - closed.
Wed 28 to Fri 30 Dec - 10.00 am to 12 noon.
Tue 3 Jan 2012 -
normal hours (10.00 am - 1.00 pm).
Crohn’s and Colitis Support - 0845 130 3344
Fri 23 Dec 2011 and Wed 28 to Fri 3o Dec - 1.00 - 3.30 pm and 6.30 - 9.00 pm.
Tue 3 Jan 2012 - normal hours.
Administration Line - 01727
830038
Fri 23 Dec - closed.
Wed 28 to Fri 30 Dec - 9.00 am - 12.30 pm.
Tue 3 Jan 2012 - normal hours.
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BSG / NACC Meeting
Liverpool 25 March 2010
Ticket Information.
Details of how to request a ticket are not yet available. If you leave your
name and email address in the boxes below we will email you the details when known.
We expect this to be in early February 2010
Are you currently receiving B12 injections? Are you aged 18
or above? If so, please help us with this research into B12 and IBD patients.
Simply
click here and fill in the questionnaire. It will take 10 minutes. Thank
you.
Protecting IBD Patient Services
Help us to fight the corner of people who are affected by Crohn's and Colitis
Click here to read our Appeal Letter
Whether
you want to walk that extra mile, hit the track running, boogie round a
ballroom, take part in a debate at our national conference, or cheer from the
sidelines ... there’s something for everyone in 2012, so
please click here to download our 2012 Events poster and put those dates in
your diary, or pin the poster on your family, community or work notice board to
encourage others.
Managing Fatigue in IBD
Crohn's and Colitis UK have been awarded
a £481, 242 grant by the Big Lottery Fund to undertake a project on fatigue in IBD.
The 4 year research project, which began in July 2010, examines the causes of
fatigue; pilots a fatigue assessment tool; and explores interventions to improve
pain management in IBD.
Crohn's
and Colitis UK aims to improve life for everyone affected by Inflammatory Bowel Disease
(IBD), the most common forms being Crohn's Disease and Ulcerative Colitis. Together
these conditions affect about 250,000 people in the United Kingdom.
The charity brings together people of all ages who have been diagnosed with IBD, their
families and the health professionals involved in their care. We welcome support from
anyone who would like to help us in our work, whether as a member, volunteer or by
raising funds. We hope that you will find the information you are looking for within our
website. If not, please contact us.
Crohn's and Colitis UK provides:
Do you have a child, aged 21 and under, with IBD?
Would you like to talk to another parent?
Call the Information Line on 0845 130 2233 to make an
appointment with our
Parent to Parent Service.
an
Information Service covering all aspects of IBD available by telephone and email
the
Crohn's and Colitis Support (formerly NACC-in-Contact) – a chance to talk confidentially
with someone who has personal experience of living with IBD
a network of local
Groups and opportunities to volunteer throughout the UK
We have almost 31,000 members throughout the UK and
membership is open to
anyone affected by IBD, to health professionals and to anyone who wishes to support our
work. For just £12 per year, members receive an initial information pack, NACC News - our
informative quarterly newsletter covering the latest in IBD research and treatment as well
as personal experiences of living with IBD - and a combined membership and 'Can't
Wait' Card to assist with emergency access to toilets. To join
click here
Crohn's and Colitis UK launches Rick Parfitt Junior Ambassador Video See the video.
Crohn's, Colitis and Employment - from Career Aspirations to Reality: launched in May 2011, reporting back in May 2012.... read more
New Crohn's and Colitis UK Survey shows 200,000 individuals forced to give up Sports Top sportsmen and women offer inspiration
.... read more
Crohn's and Colitis UK adds 2012 IBD Nursing Awards video.... read more
Crohn's and Colitis UK is the working name for The National Association for Colitis and
Crohn's Disease (NACC)
A charity registered in England Number 1117148
A charity registered in Scotland Number SC038632
A company limited by guarantee in England: company number 5973370
Disclaimer
Crohn's and Colitis UK have made all reasonable efforts to ensure the
accuracy of the information on this site, but can take no responsibility for your use of it.
Nor can Crohn's and Colitis UK take responsibility for anything contained in other linked
sites. The purpose of the site is informational and educational, and it is not a substitute
for medical advice. If you are in any doubt as to your medical condition, or if you are in
need of advice, you should consult your doctor or other health professional.
Please note that the materials on this site are intended primarily for the use of
persons accessing it from within the UK.
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Have
your ordered your Christmas Cards? It isn’t too late – yet!
Whether
you want to walk that extra mile, hit the track running, boogie round a
ballroom, take part in a debate at our national conference, or cheer from the
sidelines ... there’s something for everyone in 2012, so
