Patients in Focus 2011 winner -
'Development of an Asian language helpline
for South Asian patients with rheumatological
conditions in Birmingham'
By Kanta Kumar (right), Nurse Researcher, Immunity and Infection, Rheumatology Department, University of Birmingham
Background
RA is a common chronic disease causing joint destruction, disability and reduced life expectancy. The cost to individuals, their families, the NHS and society is high. The effective management of chronic diseases such as RA requires a multidisciplinary team working with pharmacological and non-pharmacological tools. Patients are central members of this team and successful management is dependent upon their effective engagement. This has been recognised in the recent Kings Fund report “Perceptions of patients and professionals on rheumatoid arthritis care” [January 2009], a key recommendation of which is “to empower patients with RA with the confidence and knowledge to manage their symptoms and to give them a better understanding of their care options and choices”. The current project arose from a recognition of that need and the particular requirements of excluded and minority groups.
Need for the service
Approximately 2 million people in the UK are of Indian, Pakistani or Bangladeshi origin - the largest ethnic minority group and one which comprises 18.5% of Birmingham’s population. The problems faced by RA patients from this group were highlighted using three independent approaches which have identified the need for this project and informed its development:
[1] Our quantitative and qualitative research has highlighted that RA patients of South Asian origin have negative beliefs about medicines compared with other patients and that this relates to a poor understanding of the disease, the need for treatment and an inability to effectively communicate with health care professionals (Kumar et al 2011 In Press).
[2] A survey of 500 patients attending the rheumatology unit at Sandwell and West Birmingham Hospitals (SWBH) Trust identified that a large proportion required translation services in Punjabi, Urdu or Hindi and were unable to read the script of their mother tongue (Kumar et al 2009).
[3] The South Asian RA Patients Users Group we have established at SWBH has identified the need to raise awareness of RA and to support self-management in a culturally sensitive manner (National Office Report).
The South Asian rheumatology helpline
The recognition that the requirement for translators makes it difficult for some patients to effectively engage with health care professional led us to establish a South Asian language helpline at SWBH and to develop a strategy for promoting this [see attached reference Kumar et al 2008]. The Asian Language Helpline was a novel service in the hospital and with the associated challenge of developing effective strategies to advertise it and promote usage. Strategies developed include the production of material such as credit card sized cards in local languages.
Benefits for patients and staff
The Asian language helpline has also been evaluated [publication attached]. We found that patients made use of this service, contacting the helpline for a diverse range of reasons including questions about drugs, requests for further information about RA and requests for advice about how to manage a disease flare. Through the helpline, patients, who had previously been passive recipients of care, are now able to play an active role in their management. In some cases, unnecessary visits to hospital have been prevented and in other cases, fast track Rheumatology appointments have been organised, preventing visits to A&E.
Long term strategic planning
We have been able to widely disseminate information about our experiences amongst clinical and academic communities. Several strategies have been used to do this including invited oral presentations at the West Midlands Rheumatology Forum (2007, 2009); Midlands Rheumatology Society (2009); British Society for Rheumatology (2007, 2009); Royal College of Physicians (2008). The Chief Executive of NRAS has expressed considerable interest and a review of this Helpline has been published in the winter edition of this organisation’s newsletter. We aim to get future funding to develop and sustain this service at a national level for patient use across the country.
Project innovative
Service users have been integrally involved at all stages from identification of the original need, to the development and delivery to evaluations of its effectiveness. This has ensured that our approach truly addresses patient needs and is fully informed by the patient voice. With the patient as an integral part of the team we have work with a diverse range of stakeholders recognising that the patient’s journey with their disease begins long before and continues long after their interaction with health care professionals.
We are most proud of the fact that we have managed to successfully engage with a previously disenfranchised group of patients in a way that they like, from the hospital setting out to the wider community through Birmingham Arthritis Resource Centre (BARC), to facilitate self-management. A group that has historically been difficult to access has now become an integral part of our team through the Users Group and by sitting on steering committees to develop and evaluate new educational approaches.
References
Kumar K, Deeming A, Cooley C, Carruthers D, Gordon C, and Raza K. Comparison of English and Urdu/Punjabi/Hindi rheumatology telephone helplines. Musculoskeletal Care 2009, 7 (3).
Kumar K, Gordon C, Barry R, Tiwana H, Shaw K, Raza K. “It’s like taking poison to kill poison but I have to get better”: a qualitative study of beliefs about medicines in RA and SLE patients of South Asian origin (abstract). Rheumatology 2009. 48 (Suppl 1) i160.
Kumar K, Gordon C, Barry R, Tiwana H, Shaw K, Raza K. “It’s like taking poison to kill poison but I have to get better”: a qualitative study of beliefs about medicines in RA and SLE patients of South Asian origin. Lupus Journal 2011 (In Press).