Crohn's and Colitis UK

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Crohn's and Colitis UK Awards 2010
	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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NICE recommendations on antiTNF therapy for Crohn's Disease - updated 30th November 2009

NICE has produced a further appraisal consultation document (ACD) and comments have to be submitted by the 10th December 2009. (See the link to the NICE website below.)

We urge all patients and health professionals in England and Wales to send in comments as key aspects of the recommendations in the latest proposals from NICE are substantially changed from the recommendations they made in September 2009.

Adalimumab and infliximab are both to be considered equally for adults, with local decisions as to which is the cheaper. Infliximab is available for children and adolescents up to 17 years old without a time limit. Infliximab is available for people with a fistula, but subject to time limit as set out below.

The important change is that the new ACD limits treatment for adults to a 'planned course of treatment' of a maximum of 12 months. Treatment is then to be stopped. If a patient relapses they can be given a further planned course of treatment for another 12 months.

The previous ACD from NICE stated that after 12 months there should be a review by the clinician and the patient which should consider stopping treatment if the patient had responded fully and was in remission. In the current proposals this review and the opportunity for doctor and patient to make a decision together about the best course of action has been removed.

If a patient is in full remission then a trial of stopping treatment seems reasonable and reflects everybody's concern that patients should not be on these treatments for longer than necessary.

However, if a patient is not in full remission, but is managing to lead a near normal life with their symptoms controlled, then the difference between the previous and current ACDs becomes clear.

Under tor and patient would have reviewed the situation and decided that antiTNF treatment should either continue uninterrupted to maintain the patient in their improved state, or would decide that antiTNF therapy was not going to work in the longer-term and agree a plan for moving to a different treatment, perhaps planned surgery.

Under the new ACD treatment would have to be stopped and the patient would then have to ‘relapse' with all the disruption to personal well-being, education, work, family roles which that entails, before being able to start a further course of treatment.

If the new ACD is confirmed the opportunity for any clinical discretion about precisely when to stop treatment is removed and we know from the original NACC Survey in 2007 that in the past doctors have extended treatment for short periods to take account of special circumstances such as the patient getting married, students talking their final exams, patients starting a new job.

No new evidence was presented to the committee at their October meeting that justified this change in their recommendations. They simply chose to change their earlier recommendation in order to limit treatment to a defined time.

NACC believes strongly that the earlier proposal for a review at 12 months is the correct approach – reflecting a proper balance between safety, good clinical practice, cost-effectiveness and patients' wellbeing.

An additional question raised previously by NACC and still not addressed by NICE is to make it clear that if a patient has initially responded well to one antiTNF, but then lost response, they should have the opportunity to switch to the other antiTNF treatment.

To comment, please go to the Appraisal Consultation Document and use the online comment buttons – Use the first button to identify yourself and then the comment button on Section 1, which is the most important. Please click here to go to the NICE website

Updated 30th November 2009

Information about Swine Flu

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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.

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.

Rick Parfitt Jnr
Crohn's and Colitis UK Ambassador

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Rick Parfitt Jnr Supports Crohn's and Colitis UK

Visit his website

Read Daily Mail Article

View his GMTV Video

Download Poster

Rock Ball 2012

Rick Parfitt Jnr and friends will be rocking the Hurlingham Club, one of London’s most select venues by the Thames, on Thursday 23rd February 2012 to raise funds in support of our work, for the third year in a row. Thanks to Rick’s tireless efforts, over £80,000 has been raised towards our research work, to date. Celebrities such as Rick Parfitt Snr of Status Quo, Richard Hammond of Top Gear, and Rick’s own band The All Star RPJ Band will provide a fantastic evening of entertainment.

To rub shoulders with celebrities, enjoy a great meal, a fabulous fashion show, and a chance to bid for some great prizes visit the link below. If you’d like to sit with other people from our charity, let us know and we’ll do our best to arrange this – tickets start at £175 + VAT per person. For more information visit the Rock Ball website

Rick Parfitt Jr Supports Crohn's and Colits UK

CHRISTMAS CARDS

Office Hours Christmas 2011