Study highlights barriers to involvement (chronic conditions)

Background and policy

Musculoskeletal conditions are the most common cause of severe long-term pain and physical impairment, significantly influencing the psychosocial status of those affected, as well as their families and carers (Woolf and Pfleger, 2003). In the UK in 2003, nearly 1 million Disability Living Allowance claims were for arthritis, muscle, bone and joint disease and back ailments. This represents more claims than mental health conditions, learning difficulties, heart disease, stroke and malignant diseases combined (ONS, 2003).

The Expert Patient Programme aims to help people living with these chronic long-term conditions by providing them with training and advice to manage the conditions themselves on a daily basis. Crucially, the programme uses trainers who are experts in the condition, since they are living with similar conditions themselves. The WHO and the Department of Health advocate that such self-management courses should be culturally tailored, using engagement with target communities to address increasing ethnic health inequalities. This is especially pertinent for arthritis, which has higher rates of prevalence amongst UK based South Asians than in the majority White population. Yet little is known about South Asian community-members’ experiences of living with and self-managing arthritis, their understandings and experiences with self-management courses, and what barriers and enablers to attendance for projects like EPP may exist for them.

The project

To understand the experiences of women from Punjabi Sikh backgrounds living with arthritis, the research project aimed to identify barriers and enablers of self-management practices, including attendance on a self-management programme.

Making it happen

Coventry University had undertaken a Pilot Study of the EPP, in close association with the commissioner at Coventry PCT. Looking at the data on attendees from the pilot, it was clear that there was no uptake from BME communities, despite the EPP being based in an ethnically diverse area. The programme team looked for other research evidence, and found a study by Warwick and Coventry Primary Care Research which confirmed the generic acceptability of chronic condition self-management in South Asian Indian Hindi and Sikh Groups. Based on these findings, the programme should have been broadly accessible to people from these backgrounds. Having recognised this gap in service use, the commissioner wanted to understand reasons for non-attendance of BME people on the programme, with a view to expanding the reach of EPP in Coventry for these groups. The commissioner approached the Research Centre at Coventry University to undertake the ‘Facilitators and barriers to Punjabi Sikh women’s arthritis self-management experiences’ study.

As a result of this study, Coventry PCT has implemented some of the findings including recruitment of a BME EPP specialist to work with the community in local languages. The BME EPP specialist led to the delivery of the programme in many different languages by tri-lingual volunteer tutors. This resulted in an increase in participation by BME patients. The Coventry PCT also aimed to deliver targeted solutions. They appointed staff with expertise in Punjabi Sikh culture and language to help gain access to respondents and improve the use of EPP courses by different groups across the city. Coventry PCT is now bucking the national trend of struggling to attract BME attendees on the EPP course.

A local evaluation by PCT Commissioners was conducted to understand the impact of service improvement. This supported the necessity of retaining the specialist role, which has been expanded beyond EPP to consider broader health inclusion issues for BME groups in Coventry. This change in the specialist’s role will help establish whether the EPP specialist was effective in facilitating improvement in other health areas.

Future challenges

Having done good work together to reduce ethnic inequalities in Coventry, the PCT and Coventry University have developed partnership working with Coventry City Council and Coventry Carers Centre. This partnership has delivered and evaluated self-management programmes for people living with long-term health conditions and their carers. However, regular networking events between Coventry PCT and Coventry University to further explore joint working opportunities could lead to more productive work in future.

Contact

Dr Alison Hipwell, Research Fellow
++44 (0)2476 51405
Division of Metabolic & Vascular Health
Applied Research Centre in Health & Lifestyle Interventions
Coventry University