Working with disabled people made it increasingly apparent to me that this client group experienced great difficulty in gaining access to wider health services, such as opticians, chiropodists and pharmacists. Also, many needed advice on sexual health, personal hygiene, keeping fit, relaxation and so on. Neglect of these issues can often lead to a lowered sense of self-worth, a decreased feeling of well-being and increased dependence on the medical system.
Through a research fellowship sponsored by the Nottingham Health Action Zone, which offered front-line workers time out to research an area of interest, I was able to test and confirm the anecdotal assumptions I held. The research1 was carried out between September 2000 and September 2001, mainly at a resource centre in Nottingham.
Disabled people interviewed generally seemed to see health and well-being as central to ideas of independence. To them, lack of access to “wellness services” was a social barrier – making it a crucial and unexpected component of the social model of disability. The research also found that health information and education were patchy and lacking.
Repeat hospitalisations had a negative effect on the confidence and sense of independence of those interviewed, often setting back work achieved by independent-living workers.
The research experience changed the way I approached everything when I returned to full-time work. I realised the findings should be used to make changes.
One strand of the research identified the need for disability awareness among healthcare staff. A group of service users – the Disability Awareness Resource Team (Dart) – who were experienced in this type of training, offered to work on this. Service users often bring a huge bank of skills, and their involvement in this context can strengthen and validate what staff are trying to achieve.
Other changes that arose out of the research included the forming of a support and action group by disabled female service users to express concerns regarding their difficulties gaining access to local health facilities – breast screening, smear tests and general “well-woman” health services. The local primary care trust is drawing up an action plan to tackle this health inequality.
The research also highlighted the importance of maintaining fitness in keeping disabled people independent. I negotiated with the Sports Disability Unit and a local college, whose input was based on exercise as part of a healthy lifestyle that included healthy eating and relaxation. The result was the setting up at a local centre of a fitness suite linked to general health. A local primary care trust will link into this project, possibly as a support to physiotherapy work.
The research has also influenced the way data is collected and used. Interviews showed that input tends to be focused around the impairment identified on referral forms. Yet, for example, one young woman born with visual impairment did not perceive that as a big problem – she was more concerned with pain in her spine that was preventing her exercising, and slowly taking away her social life.
Collecting such data should help us to target resources on the areas that matter to service users themselves, recognising that lack of access to health and wellness services is a major barrier to independence, and is therefore sited firmly in the social model of disability.
1Pete Hannah, Access to Health, Health Action Zone local research fellowship, 2001. For a copy of the research, e-mail the author at email@example.com
Pete Hannah is day centre officer with Nottinghamshire social services day and community support service (physical disability), and is currently seconded as facilitator to the Access to Health project.