Friday 17 August 2012
New study supports charity’s social care campaign
The Muscular Dystrophy Campaign understands how important high quality and appropriate care and support services are to people with complex needs, like people affected by muscular dystrophy and related neuromuscular conditions. So we were delighted when a study published recently by the Social Policy Research Unit underlined the importance of securing two of the charity's main campaigning aims:
- specialist multi-disciplinary care co-ordinated by a neuromuscular care advisor for every person with muscular-dystrophy or a related neuromuscular condition
- more research into the costs and outcomes of the different models of social care
The study looked into the features that characterise good care for people with severe and complex needs. One of the three groups which were studied as part of this research were young adults with complex or life-limiting conditions. One of the Muscular Dystrophy Campaign's trustees, Phillippa Farrant, and her son Dan, who has Duchenne Muscular Dystrophy, took part in the research.
Phillippa commented:
I am delighted that this research supports the things people with muscle-wasting conditions have been saying all along, for example the lack of support available to people with complex needs and the need for a key worker. It's great evidence to use as we continue campaigning to improve services and get more support on the ground.
Two of the main points that came up in the study were around person-centred care and about the way that services are organised.
Key workers and person-centred care
People with complex needs emphasised a person centred approach to care and many publications support this through a wide-range of models. However the study also found that there was no evidence base for any specific model.
The participants particularly highlighted the importance of "key workers and case managers to facilitate access to disparate services and coordinate support across sectors and boundaries. Participants wanted key workers to have expert knowledge and the skills to navigate complex service and funding systems."
This backs up our campaign for dedicated neuromuscular care advisors, who fulfil this vital role, to be available to all people with muscular dystrophy and related neuromuscular conditions. We will continue to use this evidence to support our work.
Multi-disciplinary teams and well organised services
The study showed that the way that services are organised is valued by people with complex needs. There is established evidence for four types of service:
- multi-disciplinary specialist teams
- intensive case management
- specialist social workers
- inter-professional training.
Multi-disciplinary specialist teams are very important for people affected by muscular dystrophy and related neuromuscular conditions due to the complexity of the conditions. We are delighted that the importance of these teams has been highlighted by this research.
Worryingly the study found that overall there is little evidence to support the models of social care that are considered to be good-practice for people with complex conditions. It is imperative that this research is carried out and that evidence-based social care, supported by people with muscular dystrophy and related neuromuscular conditions, is at the heart of all the support given to people with muscle-wasting conditions.
To get involved in the Muscular Dystrophy Campaign's campaigning join your local Muscle Group and push for improvements to care in your local area.
For more information contact e.somerville@muscular-dystrophy.org or on 0207 803 2853
