MSA Trust

Community Neurology Conference

Karen Walker, the MSA Trust’s CEO shares her thoughts on the Community Neurology conference she attended last week…

Last week I attended a conference on the way forward for Neurology Services in the community. The MSA Trust is very interested in how community neurology can support people living with MSA to both avoid emergency hospital admissions and ensure the best quality of life.

The conference had plenty to share that was hopeful and helpful, however understanding what the services are like from region to region is more difficult. As always the data that is collected is hugely important but once again, as we have heard so often with regard to public services, this data is very patchy across the country. This means that interpreting what is happening for people living with a long term neurological condition is difficult and can lead to inadequate services when most needed. This is especially true where there is a lack of integration between health and social care services.

In a more positive vein we heard from some pilot areas in the country where community neurology teams are trying to embed a new way of working collaboratively across the breadth of support services , encouraging GPs with specialist interests to share knowledge across their area and develop a multi-agency approach.

We also heard about new ways of using data to support better service commissioning and there were plenty of lively discussions about how to implement this use of data in an accurate and sustainable way. The use of technology in collecting personal feedback (e.g. using wireless sensor technology) was fascinating, as this offers a real possibility of improved support for people with similar conditions through collecting and combining this individual information. However this does raise questions about making sure we achieve the right balance between monitoring someone individually without being too intrusive and without compromising their confidentiality.

The conversations and the presentations were very interesting and thought provoking, and it confirmed to me the need to ensure good representation at the highest decision-making level in the UK for health and care services. To help to achieve this I would urge all of our MSA community in England to take the time to complete the survey recently published by the Neurological Alliance. This survey will look at patient experience and if we can get as many people with MSA completing it as possible we can build upon the information already gained in last year’s survey. Apart from learning more about the issues that face people with MSA and their families, we can get an insight about other neurological conditions, enabling us to compare with these but also to collaborate where issues are the same.

You have until the end of September to complete the patient survey by the Neurological Alliance, the link is here – https://www.surveymonkey.co.uk/r/THTBMTS. Andy and Emma have a paper copy in the office and are more than happy to complete the survey on your behalf and then input it online if you wish to contact them to discuss this. The more information we can gather on what happens to people with MSA, the better able we are to support you.


Disclaimer: The views and opinions expressed in the blogs published on these pages are those of the authors and do not necessarily reflect the official policy or position of the MSA Trust.

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