My Lords, I would like to raise the issue of sufferers of Crohn’s disease and colitis, who may not have been able to put their case as strongly as they might have in this whole arena of the development of PIP. There are around 240,000 people in the UK who are sufferers of Crohn’s disease or ulcerative colitis—collectively known, of course, as inflammatory bowel disease. They are lifelong conditions that most commonly present first in the teens or early 20s, and the intestines become swollen, ulcerated and inflamed.
The concern that these sufferers have is around Activity 5 in the descriptor list, which is about managing toilet needs or incontinence. The “continence” descriptor is limited. It fails to take into account the impact of the frequency and urgency experienced 24 hours a day by people living with conditions such as inflammatory bowel disease, as well as difficulties in reaching a toilet, both at home and outside the home, cleaning up after using the toilet or an episode of incontinence. The descriptor is phrased around the need for prompting or assistance to manage continence. Although this reflects the barriers imposed by people who have learning disabilities and musculoskeletal difficulties, it does not account for the severe difficulties faced by some people with inflammatory bowel disease in relation to controlling their bowels, who are otherwise physically well.
People with inflammatory bowel disease may experience additional costs associated with buying food and drink, which are currently ignored by the descriptor. These may include the need to buy expensive, nutrient-rich foods to address deficiencies, the need to modify their diet to avoid other foods or additives or the need for frequent and urgent access to a toilet, while the fatigue associated with IBD may require a taxi to and from the shops or the use of online shopping facilities. Consideration is not currently given to the additional cost of utilities for people who may be forced, because of this disability, to live more frequently within their home, and laundry or high utility costs are often incurred by people with IBD who have to wash or replace their clothes more frequently due to soiling or extreme fluctuations in weight. Can my noble friend the Minister explain how IBD sufferers are currently handled within DLA and whether the descriptor as it now stands can be looked at again to reflect the needs of sufferers of this not-well-understood disease?
8.45 pm