Developing a Palliative Care and Neurological Service for People Severely Affected by Multiple Sclerosis (MS) in Southeast London
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Vivat, B, King's College London, UK, Edmonds, P, King's College London, UK, Burman, R, King's College London, UK, Silber, E, King's College London, UK, Higginson, IJ, King's College London, UK |
This project combines qualitative and quantitative methodologies, building on the UK Medical Research Council framework for developing and evaluating complex interventions. Qualitative methodology semi-structured interviews with patients and carers, and focus groups with healthcare professionals has identified themes relating to the current provision of care for this population. Key themes include: a lack of continuity of care, problems accessing information and welfare benefits, difficulties with end of life issues. Qualitative methodology was appropriate for the service design, since it enabled an understanding of the patient experience; however some tensions arose between understanding the patient experience and the need to benchmark the patient population using a validated quantitative tool (the UNDS). This methodology has also been challenging, as the patient population is less likely to access specialist neurology services, because of cognitive impairment, physical disability and communication difficulties. Strategies to address this included: holding a national project launch, with associated widespread publicity, developing a project website, and involving local MS Society branches, neurologists and MS nurse specialists. This led to widespread local interest and the identification of adequate numbers of patients and carers for the interviews. A new palliative care service, comprising a consultant, a nurse specialist, and a co-ordinator with information and welfare benefits expertise, has been developed, and will start in early 2004. It will be evaluated using both qualitative (patient and carer interviews) and quantitative (standard outcome measures; control group comparison) methodologies to test whether access to the new service addresses the issues identified.
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