It’s a numbers game
Head of Services, Andy Barrick, talks about the need to get accurate information about the numbers of people living with MSA in the UK.
Thanks to scientific research we know that globally around five people in every 100,000 has MSA. But when it comes to working on a national, regional and local level it’s very challenging for the health service to provide the best care for people with MSA. This is mainly because of under-diagnosis and lack of awareness.
We know that many people with MSA are initially diagnosed with Parkinson’s and, sometimes, their families only find out they had MSA after death and a post-mortem.
But it’s essential people with MSA receive an earlier diagnosis as this will help them get the help and support they need. To help achieve this we recently submitted evidence to the Government’s Public Accounts Committee (PAC) emphasising that we are struggling to get information about the numbers of people living with MSA.
We know that some of the reasons for this are the rarity of the condition; the high proportion of people without an accurate MSA diagnosis and the lack of data from Hospital Episode Statistics Centre due to low numbers.
Anecdotally, we think that the number of people with MSA going to hospital through unplanned and planned admissions is increasing. Unplanned admissions seem to be mainly due to urinary infections and respiratory problems but, unfortunately, we can’t easily access any data that would help us confirm this.
We have stressed to the PAC that we believe that the care of people with MSA could be improved and money saved if we knew the causes of emergency admissions. One of the key things the Trust could do is to educate doctors and nurses working in emergency departments about MSA.
At the other end, we are aware that when people with an MSA diagnosis pass away, the disease is sometimes not being put on registration certificates and this may hide the true number of people with the disease and its overall impact.
It would be really useful to have examples your experiences so if you or someone you care for has been admitted to hospital recently and found healthcare professionals were unaware how to treat MSA, I would really like to hear from you.
Please email andy.barrick@msatrust.org.uk or comment below.
Thank 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.
