Information for those with Ulcerative Colitis

Ulcerative Colitis Charter

On the 22nd November 2008 we launched a petition on the 10 Downing Street site to lobby for a 10 point charter. Please sign the petition at -

http://petitions.number10.gov.uk/ColitisCharter/

Colitis Charter Petition

We the undersigned petition the Prime Minister and Secretary of State for health to consider and where possible implement the 10 points in this charter to improve the treatment and quality of life for the 120,000 ulcerative colitis sufferers in the UK.

Ulcerative colitis or Inflammatory Bowel Disease (IBD) is life threatening - lifelong chronic illness that affects around 120,000 people in the UK. It is caused by an immune system fault – rather than lifestyle issues – and it requires lifelong treatment and medication often with hospital stays. The disease is difficult to manage and unpredictable even for health professionals. The drugs can also have severe side effects including liver damage and damage to the immune system.

Whereas other conditions of this severity and scale such as diabetes and asthma have co-ordinated strategies colitis appears to have been overlooked in this respect. This may possibly be due to some confusion with irritable bowel syndrome (IBS) – a non-life threatening lifestyle based condition.  This 10 point charter aims to improve the treatment and quality of life for colitis sufferers.

1) Ulcerative colitis patients should have access to nurse led clinics and a colitis/IBD nurse

Ulcerative colitis is a condition that can change with little warning and needs to be managed day by day. The management of it – and the use of the drugs involved is beyond the knowledge and experience of most GPs. It is therefore more appropriate that someone with colitis has access to a specially trained nurse for day to day management of the condition rather than their GP.

2) Ulcerative colitis patients should receive free prescriptions for long term medications

Ulcerative colitis is lifelong chronic illness that requires lifelong medication, usually consisting of two or more ongoing prescriptions/medications. Cessation or reduction of such medication will in most cases lead to hospital admission, the requirement for surgery and in some cases death. There is no action that colitis sufferers can take to stop the illness and there is no discernable link between lifestyle and the disease. We would therefore suggest that it is only fair and proper that those diagnosed with colitis should receive free prescriptions for medications associated with their illness in the same way as those with other life threatening conditions such as diabetes do. Treatment is supposed to be free at the point of delivery - not just the diagnosis.

3) Ulcerative Colitis patients should be given access to disabled toilets/RADAR keys

If you were to try and identify one group in society with a need to access toilets colitis sufferers would probably come at the top. Unfortunately public toilets are often in a poor state – and in an unhygienic condition. This is far from ideal for people already suffering from an illness and on immunosuppressant drugs.
Access to disabled toilets would provide colitis sufferers at least some access to clean and useable facilities. The larger layout and greater privacy would also allow them to change/clean up after inevitable accidents.

4) Patients with severe ulcerative colitis should be given access to disabled parking

People who suffer from colitis often go for weeks or months where they need to use the toilet more than once per hour. During these periods they still need to be able to perform essential tasks such as shopping. Whilst it is clearly inconvenient for the general public to have to hunt  or wait for a parking space – for a colitis sufferer it can make the difference between being able to shop and not. Parking difficulties are often most acute at local shops – the only ones in range of those with severe colitis.
Access to disabled parking spaces would help in this matter – as they are usually in locations close to shops – and more likely to be available.

5) Incapacity benefits for people with ulcerative colitis should only be assessed by people with specialist training in the condition

It is accepted that colitis affects the whole of someone's body - and not just their bowel. People assessing colitis sufferers therefore need to properly take into account both the physiological and psychological impact of the disease. It is therefore suggested that claims by people with colitis only be processed by people with specialist training in the condition.

6) Ulcerative colitis patients should be given access to dieticians

Though colitis is not caused by diet – it can be helped by special diets tailored to the disease. These diets are relatively difficult to understand - and include increases in certain types of fatty oils and reductions in insoluble fibre. Colitis sufferers are also likely to be malnourished – with weight loss being a great concern. Colitis sufferers should therefore be referred to dieticians with specialist training in the condition to help advise them on diet.

7) The NHS and NICE should improve treatment guidelines for ulcerative colitis patients and perform more research into best practice for treatments

Unfortunately there seems be no co-ordinated strategy in determining the best use of the treatments available for colitis. More research and guidelines are needed for the following

  • Use of steroids in colitis treatment and strategies for managing steroid taper
  • Use of diet in managing ulcerative colitis
  • Use of vitamin and mineral supplements in ulcerative colitis treatment and support
  • Links between hydration and colitis
  • Links between moderate alcohol consumption and colitis

8) Improved packaging design and/or dosage boxes should be used to increase medicine adherence

As patients are taking the same medications every day for years it is very easy for them to miss doses as they can’t remember whether a dose has already been taken. This could be greatly helped by a number of simple and inexpensive measures

  • Provision of dosage 3x7 boxes to patients
  • Marking of blister packs with days of the week

9) Objective monitoring of the condition with the use of a standardised daily diary for ulceraitive colitis patients

Patient’s ability to monitor their condition properly and communicate any changes to GPs and specialist would be greatly improved by providing them with a standard way of recording information. This could be simply achieved using a daily diary to record

  • Number of bowel movements
  • Presence of blood/mucous
  • Hydration (colour of urine)
  • General wellbeing
  • Notes

10) The NHS should introduce the concept of specialist GPs

In larger GP practices – with 5 or more GPs it should be possible for each GP to specialise in certain conditions and areas of medicine of interest to them - as well as general practice.  The idea would then be that if a patient had long term or unusual condition they would be assigned to the GP who decided to specialise in their condition.
This should mean that the specialist GPs get to see far more patients with a condition – and gain both experience and tailor their own learning to their area of specialism. They should also be able to build up much closer relationships with hospital specialists.
For difficult to manage conditions such as ulcerative colitis this would give a marked improvement in the quality of care with a GP experiencing 5 times as many patients with the condition than would otherwise be the case.

 
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