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Healthcare Communications Award

10th July 2008 - For the second time in three years NACC has won this premier award in healthcare communications.

Seen above are Vice Chairman Nigel Westwood (right) and Richard Driscoll Director of NACC (left), with Sarah Rogers and Polly Gould of Healthcare Solutions, the media agency who worked with NACC on the award-winning IBD and Me Campaign.

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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 the earlier ACD the doctor 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.

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Don't Miss Out!

NACC really wants to celebrate the efforts of the volunteers who work tirelessly to support NACC and its members.

The only way we can do this is if you tell us about those exceptional, hard-working people who really make a difference to the lives of people affected by IBD.

Don’t miss your chance to say ‘thank you’.

Click here to find out more and to make a nomination.

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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

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NACC Office and NACC Services over Christmas and New Year.

NACC Information Service 0845 130 2233
Closed Christmas Eve, Boxing Day and New Year's Day
Available in the mornings 10.00 am -12 noon on 29th, 30th, 31st December.

NACC-in-Contact Service 0845 130 3344
Closed Boxing Day and New Year's Day
Available in the afternoon only on Christmas Eve and New Year's Eve
Available afternoons and evenings on 29th and 30th December

NACC Office 01727 830038
Closed Christmas Eve, Boxing Day and New Year's Day
Available in the mornings 9.00 am -12.30 pm on 29th, 30th, 31st December

All resume normal working on 4th January 2010.