Steve Kinrade, BA (Hons), RGN, Dip Sexual Health.
Patient Information Officer, Royal Liverpool Hospital and Broadgreen University Hospital Trust
Much is debated and written about service delivery in the NHS. It is constantly on political, economic and social agendas. However, in light of the Disability Discrimination Act 1995, does the NHS discriminate against disabled members of our society when they are in need of the services it offers?
The Disability Discrimination Act 1995 is a very important legislative milestone for disabled people, who constitute 15% of the UK population. The aim of the Act was to end the discrimination which many disabled people faced daily. Discrimination is defined within the Act as ‘offering less favourable treatment because a person has a disability’.
The Act has become operative in stages, so as to give employers and service providers time to prepare for their new responsibilities.
Most importantly for these service providers, the Act allows a disabled person to take legal action if they can show that a service provider has failed to make a reasonable adjustment. This legal action can be taken through the Disability Rights Commission, and such legal action could have a serious financial impact on the service provider.
The Act’s definition of disability focuses on the premise that a person must have a physical or mental impairment which has a substantial, long-term adverse effect on their ability to carry out normal day-to-day activities. For a disability to be considered long term it must have lasted, or be expected to last, 12 months or more or to be likely to last for the rest of the life of that person. Physical impairments include sensory impairments. Mental impairments include learning disabilities and well-recognised mental health conditions. People who have had a history of disability or who are recovering from a mental illness, are also covered under the Act.
People with progressive conditions such as cancer, HIV, multiple sclerosis (MS), motor neurone disease (MND) and muscular dystrophy are also covered by the Act, provided that their condition has had an impact on their ability to carry out day-to-day activities, and as long as the effect could eventually be expected to be substantial.
Disabled people’s experiences
For the purposes of this article, patients with a disability from a number of trusts, as well as representatives of patients groups and organisations, were interviewed in an informal manner. They were questioned on their experiences as a disabled person in hospital, and asked for suggestions about how NHS hospitals and primary care trusts could improve the quality of service that was being provided. The themes that emerged are discussed in Box 1.
These experiences reflect the research literature, which suggests that the attitudes of health-care professionals are crucial when considering the experiences of disabled people in the acute hospital setting. When considering how accurately nurses viewed patients’ needs, Farrell (1991) argued that this particular professional group used stereotypes. This is similar to findings by George (1992), who suggested that nurses demonstrated stereotypical and often negative attitudes towards patients with physical disabilities.
It was felt that the care delivered by health-care professionals could generally be improved. However, some disabled patients felt that they had been discriminated against in the standard of care they had received. The reason for this was that it seemed that health-care professionals were not fully aware of the additional needs of a disabled person. Some NHS trusts had no protocols in place regarding the care of patients with disabilities, together with a lack of knowledge surrounding the existence of the Disability Discrimination Act and its implications for health-care delivery. This lack of awareness is not surprising, as there seems to be little or no systematic awareness training in place.
A review of the literature highlights this lack of awareness displayed by health-care professionals regarding disability issues, an issue that has been supported by the investigations for this article. Any diagnostic category or chronicity should not affect professional commitment to clients. But in the study conducted by Baker et al (1997), more than a third of the respondents felt more comfortable with non-disabled clients. Also, some disabled people feel that health professionals hold negative attitudes towards them and this reduces the quality of care that they receive (Conway, 1996). The use of language is important, as it can be discriminatory. Raising awareness would help to challenge these negative views of disability.
Health-care professionals can inadvertently discriminate in a variety of ways, for example by having routines that reduce the independence of some disabled patients, or by neglecting nutritional requirements by failing to assist patients with eating and drinking.
However, one study (Marsden and Davis, 2001) found that the morale in the wards was low because of staff shortages, and that the subsequent high turnover of staff made education and continuity difficult. These factors may have contributed to the nurses’ negative attitudes to a patient group who possibly needed more time and attention than other patient groups.
It is obvious from the experiences and reflections of patients and staff alike that some disabled people are not having their needs met while in hospital. The main reason for this was a lack of awareness about disability, and a focus on the disability rather than the patient.
It is clear that there is a difference between legal requirements conveyed in the Disability Discrimination Act 1995 and the services that are being provided by the NHS.
Disability activist groups and organisations are becoming increasingly more proactive in lobbying for anti-discriminatory legislation and identifying discriminatory practice. It is only a matter of time before the Disability Rights Commission turn this into legal action.
The way forward
Awareness raising is the key to improving the service delivered to patients with disabilities. The NHS needs to provide a framework to educate and support all its staff in order that disabled patients are treated in a non-discriminatory fashion (see Box 2).
Health-care professionals have particular responsibilities and opportunities to challenge discriminatory thinking, policies, protocols, and practices.The Disability Discrimination Act should be seen as an opportunity rather than a threat: an opportunity to ensure that all our patients have equitable access to a quality service. The Act should be embraced by the NHS, and the NHS needs to put in place policies and protocols to ensure that awareness of disability issues is raised and that frontline staff can access clinical support when required in order to deliver a first-class service to all of its patients.
Baker, M., Fardell, J., Jones, B. (1997) Disability and Rehabilitation: Survey of education needs of health and social service professionals. Full report: the case for action. London: Open Learning Project.
Conway, K. (1996) Nursing the physically disabled in a general hospital ward. Journal of Clinical Nursing 5: 2, 121-125.
Farrell, G.A. (1991) How accurately do nurses perceive patient’s needs? A comparison of general and psychiatric settings. Journal of Advanced Nursing 16: 1062-1070.
George, M. (1992) As others see us. Nursing Standard 7: 10, 20-21.
Marsden, R., Davis, S. (2001) Disabled people in hospital: evaluating the CNS role. Nursing Standard 15: 21, 33-37.