Transport CommitteeWritten evidence from Crohn’s and Colitis UK (DAT 40)

1.0 Summary

1.1 Legislation relating to transport for disabled people is not enforced sufficiently to prevent people with Crohn’s Disease and Ulcerative Colitis, known collectively as Inflammatory Bowel Disease, (IBD) from experiencing significant barriers to using public transport. These include:

The inadequate provision of adequate toilet facilities on trains and stations.

The inadequate provision of information relating to stations with toilets on the London Underground.

The inadequate provision of assistance from staff, who fail to recognise “hidden” disabilities and their impact on ability to travel.

2.0 Legislation

2.1 According to the Equality Act 2010, disability is defined in Section Six as someone with a “physical or mental impairment” which has a “substantial and long-term adverse effect” on their “ability to carry out normal day-to-day activities”.

2.2 About 250,000 people in the UK have Crohn’s Disease or Ulcerative Colitis, collectively known as Inflammatory Bowel Disease (IBD). However, awareness and understanding of these conditions remain very low.

2.3 These are lifelong conditions that most commonly first present in the teens and early twenties (mean age at diagnosis is 29.5 years). In IBD, the intestines become swollen, inflamed and ulcerated. Symptoms include frequent diarrhoea (sometimes with blood and mucus), acute abdominal pain, tenesmus (the constant urge to have a bowel movement), weight loss, and profound fatigue. Symptoms vary in severity from person to person and flare up or improve unpredictably. Inflammatory Bowel Disease is different from Irritable Bowel Syndrome (IBS).

2.4 Consequently, it may be that people living with IBD will meet the definition of disability and are covered by the provisions within the Act.

2.5 Particular areas which are not sufficiently enforced is the concept of “indirect discrimination” (Ch2 Section 19) and the requirement for “reasonable adjustments” (Ch2, section 20) to be made for people with disabilities.

2.6 Indirect discrimination is defined in the Act if someone “applies a provision, criterion or practice which is discriminatory in relation to a relevant protected characteristic” of someone with a disability. A “practice which is discriminatory” is defined as “persons with whom B shares the characteristic at a particular disadvantage when compared with persons with whom B does not share it”.

2.7 According to the legislation, “reasonable adjustments” include “a requirement, where a provision, criterion or practice of A’s puts a disabled person at a substantial disadvantage in relation to a relevant matter in comparison with persons who are not disabled, to take such steps as it is reasonable to have to take to avoid the disadvantage.” And “where the first or third requirement relates to the provision of information, the steps which it is reasonable for A to have to take include steps for ensuring that in the circumstances concerned the information is provided in an accessible format”.

2.8 Neither these principles of “reasonable adjustment” or “indirect discrimination” are being sufficiently enforced for people with IBD, which is rendering public transport inaccessible.

3.0 Case Examples

3.1 Crohn’s and Colitis UK members have told us that there is a serious problem in terms of the perception of disability from public transport staff, which is disproportionately focused on physical disabilities such as wheelchair access, despite the fact that IBD is equally debilitating.

3.2 A Crohn’s and Colitis UK member explains: “People like myself who suffer from a chronic illness such as IBD also need use of disabled seating at times, as it is difficult to hold yourself up and stand for long periods of time when suffering from symptoms such as extreme fatigue, abdominal pain, joint pain and sometimes dizziness. It is frowned upon by public transport staff when those with a non-visible disability use this seating.”

3.3 Furthermore, members have also reported difficulties in receiving assistance when booking airline tickets. One member told us: “I was told off down the phone for contacting the helpline for passengers with disabilities when I wasn’t registered disabled, was told I couldn’t request a seat near the toilet and that I couldn’t have any extra hand luggage allowance for my medication”. This is a direct contravention of EC1107/2006 which states that “In order to give disabled persons and persons with reduced mobility opportunities for air travel comparable to those of other citizens, assistance to meet their particular needs should be provided at the airport as well as on board aircraft, by employing the necessary staff and equipment.”

3.4 Another serious concern of our members, is the availability of toilet facilities on the London Underground network, and in particular, the provision of information about the location of toilet facilities.

3.5 In the event of an urgent need to use the toilet while travelling on the tube, it is difficult for people with IBD (and the wider public) to know whether an approaching underground station contains facilities, or whether it is better to leave the station and find a toilet outside. This lack of information can cause unnecessary distress and delay in the event of an urgent need to use the toilet.

3.6 Although Transport For London does produce a map of stations with toilet facilities (http://www.tfl.gov.uk/assets/downloads/toilets-map.pdf) this is downloadable only, unlike notifications of wheelchair accessible stations, which appear on the standard tube map. It is also potentially difficult to download the map while underground.

3.7 The lack of easily accessible information about the location and provision of toilet facilities on the London Underground network is a breach of “reasonable adjustment” requirements, as the practice of making the toilet map downloadable only clearly puts, “a disabled person at a substantial disadvantage in relation to a relevant matter in comparison with persons who are not disabled”, in the words of the legislation.

3.8 Many of our members have also criticised the state of public toilets at national train stations, which can cause further difficulties in the event of an immediate need to use the facilities.

3.9 A member explains: “There seems to be a good provision of toilets at the rail stations I use. However, if the toilets are closed or removed due to maintenance or even building work then I cannot be reliant on them. It can also be embarrassing and distressing when the toilets are not maintained well, for example broken flushes and door locks. Also, when you have to ensure you have a specific amount of cash change for certain train station toilets, this can be difficult when you suffer from urgency”.

3.10 The need to pay for public toilet facilities on trains is a serious concern for many people with IBD. Another member of Crohn’s and Colitis UK told us: “Patients with active IBD often need to access toilets much more frequently than non-sufferers and perhaps the Committee should consider whether this purely medical need for toilet access should be charged for under disability legislation, as provision for many others areas of medical disability is free within the transport system—eg ramps for wheelchair users.”

3.11 Another member explains: “The time spent searching in your purse for the correct change (or trying to obtain some change if you don’t have any) and then queuing to go through the turnstile could make the difference as to whether or not you reach the toilet in time”.

3.12 It is clear that poor quality, out-of-order toilets can have a prohibitive impact on the ability of people with IBD to use transport, as well as the difficulty in paying for toilet access at short notice. Although some closures are inevitable, it is arguable that poorly maintained toilets and charges for toilets cause people with an immediate, urgent need to use the toilet such as those with IBD a “particular disadvantage when compared with persons with whom B does not share it” as stated by the “indirect discrimination” provisions in the Equalities Act 2010 legislation.

3.13 Although legislation set out in the Equality Act 2010 and EC1107/2006 is sufficient to prevent discrimination against people with IBD, we believe this legislation is not being enforced with sufficient rigor to provide the support that people with these conditions require when using public transport.

4.0 About Crohn’s and Colitis UK

4.1 Crohn’s and Colitis UK is the major charity offering information and support to anyone in the UK affected by these conditions. Established in 1979 as a partnership between patients, their families and the health professionals caring for them, the charity’s services include four information and support services, a website, a wide range of accredited information sheets and booklets and a nationwide network of locally based Groups. The charity also raises awareness of these little-known conditions, campaigns for improved health and social provision for patients, and funds vital research. Crohn’s and Colitis UK is the working name for the National Association for Colitis and Crohn’s Disease and currently has nearly 31,000 members across the UK.

January 2013

Prepared 13th September 2013