Feature

Breaking down barriers

David Ackroyd and Judith Emanuel share their experiences in developing and consulting on accessibility guidelines for the NHS

It was both exciting and inspiring to be working on Breaking Down Barriers: guidelines for purchasers of services for disabled adults aged 16-64 with physical and sensory impairments for North West regional health authority. We learnt a lot about consultation and about disabled peoples’ perspectives which we want to share with others.

Discussions with people from Greater Manchester Coalition of Disabled People influenced our plans for consultation. GMCDP suggested that disabled people should be consulted separately from other groups and drew our attention to the power imbalance between disabled people and other interest groups. As a result the consultation was done in three separate groups: disabled people as users; purchasers of services; and providers of services.

GMCDP representatives also suggested that the needs of carers should be considered separately. They explained that, in their view, the concept of carers depends on people being dependent. They argued that independence is based not on the tasks people can do, but on the degree to which they have control over their own lives. And the focus on carers tends to neglect the fact that many disabled people are themselves carers, as parents, partners, children or friends.

We began to recognise the potential conflict of interest between carers and disabled people and that the assumption that they were both users of services for disabled people was not valid. It became clear to us that the role of unpaid carers in the consultation process should be similar to that of paid carers. This was not to deny that carers, like NHS staff, have personal needs — but they were not the prime purpose of this project. We decided to consult the carers as providers.

Having decided to consult purchasers, providers and disabled people in separate groups we made links with disabled peoples’ organisations to set up consultation through existing structures. While we were aware that not all disabled people are members of groups we could not see a way of reaching, within a reasonable time, a wider range of disabled people. We also wanted to attract people who could contribute towards strategy development and felt that activists were more likely to have some experience in this.

Our plans for consultation enabled us to pose specific questions to the different groups. We asked disabled people about their health needs. Purchasers were asked what influenced their decision making. To complete the organisational cycle we needed to know as much as possible about what made providers responsive to purchasers. We hoped to frame guidelines which would encourage effective contracting and change where necessary.

We were clear that disabled people should play the central role in developing the guidelines and should comprise at least half of the group. We also wanted a fairly even distribution between the number of people there as purchasers, providers and as lay disabled people.

Each of the disabled peoples’ organisations involved in the consultation was invited to select two members for the strategy group, who would be paid. Other disabled people involved included a HA member, an officer of a purchasing authority and a representative of a provider organisation.

Other members included a HA chief executive, a GP fundholder, a consultant in rehabilitative medicine, a carer, a purchaser from social services, a trust community care co-ordinator who was also an occupational therapist, a community physiotherapist, and an officer from a voluntary sector organisation.

We assumed that definitions would be agreed at the first meeting, but this turned out to be the most difficult task of the whole exercise. There were two starting points: the definitions agreed by the British Council of Organisations of Disabled People and those agreed by the World Health Organisation and used in the international classification of impairments, disabilities and handicaps. Many academics and professionals believe that the WHO definitions reflect a social model, but disability theorists argue that WHO’s definition of the word ‘disability’ focuses on the individual as problematic, requiring change to or by the person.

The definition of the word ‘disability’ which has evolved through the disability movement focuses on society’s approach to enabling people to participate in an equal way. The debate about definitions was crucial, since it would determine what the guidelines should address and we all agreed that the final decision should be acceptable to the disabled members.

Terminology was an equally important and contentious issue. There were two groups of disabled people on the strategy group, who could not agree on terminology. While people from GMCDP preferred to use the word ‘impairment’ to mean ‘where part of an organ or mechanism of the body is unable to function fully’, the deaf members felt that ‘impairment’ had a negative connotation and preferred ‘difference’.

This was unacceptable to the GMCDP members because it was too non-specific and did not classify the functional range which is the basis on which oppressive societal and individual attitudes are formed. In the end we had to accept that consensus could not be reached, and agreed to use ‘impairment’ and to include a statement about the perspective of deaf people.

As a result of these definitions the guidelines were concerned with access in its widest sense, including physical, information, communication, emotional and psychological, and financial aspects. Their aim was to ensure that all health services are appropriate and accessible to all disabled people in all their roles as workers, parents, friends and children. Specialised services were addressed towards the end of the guidelines, and should only be provided where general services are not appropriate.

Our guidelines received considerable support, notably from disabled peoples’ organisations and the Department of Health, as well as purchaser and provider organisations. Criticism or concern came from some clinicians. Looking at guidelines developed elsewhere as well as the way Breaking Down Barriers was received suggests that service managers and policymakers are open to a wide range of influences in developing services for disabled people at the present time.

The guidelines were circulated to all health authorities in the then North West regional health authority, although there was no active dissemination so implementation has been patchy. Some people in disabled peoples’ organisations are using the guidelines to campaign for improvements in access to health services.

Developing Breaking Down Barriers made us think about the assumptions on which most health services and research concerning disabled people are based. We became aware of the importance of definitions, making disabled people the centre of service development and concentrating on removing the barriers to participation rather than ‘managing’ impairments.

We look forward to the day when researchers ask people if they can get to where they want to go with or without aids and assistance and if not, what stops them, rather than whether they can walk there. Gerry Zarb and colleagues at the Policy Studies Institute and the University of Leeds are currently working on such issues in the ‘Measuring Disablement in Society’ project, and we hope that their work will, in turn, contribute to further breaking down of the barriers.

This article is adapted from J Emanuel and D Ackroyd: Breaking Down Barriers in C Barnes and G Mercer (eds), Exploring the Divide: Illness and Disability. Leeds: The Disability Press, 1996.

The guidelines, Breaking Down Barriers: guidelines for purchasers of services for disabled adults aged 16-64 with physical and sensory impairments, are published in two volumes by the North West Regional Health Authority, 1995. Copies are available from Community Care, NHSE North West regional office, 930-2 Birchwood Boulevard, Millenium Park, Birchwood, Warrington, WA3 7QN. Tel: 01925 704236.