Pilot research project – Towards a social model of service provision for people living with Parkinson’s disease
Debra Hopkins, Centre for Disability Studies, 2002
Summary: This research project is a part of the larger proposal for monitoring, evaluating and developing the services for people with Parkinson’s Disease that is currently being devised by the Greater Glasgow Health Board. The findings of this study will be of use to health planners and commissioners, acute and community care trusts, local authorities, individual and team practitioners and The Parkinson’s Disease Society in the planning and development of future services.
The Mansionhouse Unit Parkinsons’ clinic has been operational since January 1994. The backdrop to this unit’s establishment is the Romford Pilot project in Essex. This project demonstrated the advantages to patients of an organised service for people living with Parkinson’s disease. At the heart of this was the provision of a range of specialist therapies delivered in a timely and accessible manner. The Mansionhouse unit clinic has broadly adopted this model and the service has consistently expanded over the subsequent seven years.
This unit has a dedicated team of therapists, and set the precedent for Nurse Specialists in Parkinson’s Disease in Scotland. There is a policy of open access to the nurse specialist in operation. There has been some debate over the stage at which specialist therapies are introduced to the patient with PD. The debate centres around gaining a balance between the most efficient deployment of valuable services on the one hand and what the patient needs, according to their clinical status, on the other. The practice of the Mansionhouse unit has tended to be to favour early assessment for specialist services. The team believes that a well as anticipating problems early, this has the added benefit of establishing a relationship between practitioners and patients early on. This is seen as a valuable resource by the team.
The team at the Mansionhouse Unit is keen to evaluate its services and the acceptability of the service to their patients, and to this end regularly use focus groups and questionnaires, notably the standardised psychometric SQ39 scale, in order to gain valuable feedback on their services.
Whilst these measures are useful in some research and evaluative contexts, they are limited in the degree to which they can inform interpretation and meanings that are attributed to experiences. Rather they are best suited to illustrating patterns of behaviour.
However, there are also methodological problems with using this type of measure in the context of a medical condition that is characterised by fluctuation and change.
In depth qualitative interviews could ‘fill in the gaps’ left by the quantitative satisfaction surveys and standardized measures. Current health policy such as The Expert Patient (DoH, 2001) and The New NHS: Modern, dependable (DoH, 1997) emphasises patient involvement and service provider accountability. Rethinking what is meant by ‘accessible services’ in the context of patients’ and practitioners’ experiences and the ‘social relations of care’, may be the linchpin to achieving the governments’ pledge to moving towards a social model of health care provision.
Aims To evaluate the specialist hospital based services for people living with a diagnosis of PD in the Greater Glasgow Health Board area. Special attention will be given to: the role of carers; information provision to patients and family, drug and therapy prescribing and clinical decision making and practice (how decisions are made about therapies and by whom).
Study Design Two groups of individuals with PD will be sought for semi-structured interview. These will be recruited from the Southern General Hospital PD clinic and the Mansionhouse Unit at the Victoria Hospital, and will have a diagnosis of Parkinson’s Disease (as distinct from parkinsonism). The first group of individuals will have a very recent diagnosis of Parkinson’s Disease and the second group of individuals will have received their diagnosis some time before, say from five to ten years beforehand.
Quota sampling target frame
Total sample size = 80 interviewees, to include
- Twenty individuals with a recent diagnosis of Parkinson’s disease
- Twenty people with a long standing diagnosis of Parkinson’s disease
- Twenty people attending a neurologist led specialist clinic
- Twenty people attending a geriatrician led service
- Twenty ‘family’ members of individuals with a recent diagnosis of PD
- Twenty individuals with no access to a dedicated multidisciplinary PD team
- Twenty individuals with access to a dedicated multidisciplinary PD team
- Twenty ‘family’ members of individuals with a long standing diagnosis of PD
- Twenty people who have access to a nurse specialist service
Research Questions
what is the impact of the diagnosis of PD on an individual and ‘family’? What are individuals’ perceived needs at this time?
how responsive are services to the needs of people as their condition progresses?
can the involvement of patients and ‘family’ in monitoring and decision making affect the health and wellbeing of people living with PD? If so, how?
what are the key features of a dedicated service provision for PwPD from the service users’ perspective?
what are the key features of a dedicated service provision for PwPD from the service providers’ perspective?
what is the current role of the voluntary sector in service provision? Is this resource being appropriately and maximally utilized?
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