310/365 – Myasthenia Gravis: the latest

As I mentioned in yesterday’s post about the Myaware Young People’s conference, CEO Ruth Inglew gave an update on the charity’s activities and aims over the next year. 

Some of the information I had heard before and some was new, but it was interesting to hear it all put together.  

An overview of myasthenia

Ruth started by reasserting that it is difficult to know exactly how many people in the UK with MG there are due to a lack of NHS and local authority data. The charity thinks there are:

  •  Between 10,000-12,000 people with a form of MG in the UK
  • 53% over 60
  • 47% under 60
  • A third have ocular myasthenia gravis
  • 600 have congenital myasthenia gravis
  • 300 have LEMS

The charity have a database of around half of the people in the UK who are affected by MG and have in the last year increased the number of new members by 721 people.

It’s incredible to think of how many people there are out there who haven’t reached out for support.

Data from the Neurological Alliance

The next section of the talk focused on data from the Neurological Alliance in 2014.

It said that:

  • 51% of people with MG saw a GP three or more times before they were referred to a neurologist
  • For 40% it took more than 6 months to be referred to a neurologist
  • More than 50% had difficulty receiving treatment or services

Even more shocking than the above is the amount of money being spent on non- elective hospital stays for myasthenia patients – a whopping £16.3 million a year in 2012/2013. 

NHS spend varies largely in the different regions. The charity has calculated that replicating the working methods of the cheapest region across the country, assuming patients in that area are receiving the best care meaning that they aren’t needing emergency hospital treatments, could save the NHS around £8 million a year. There are quite a few ifs and buts in the theory, however the regional differences do suggest there are savings to be made.
There is scheduled to be a National Institure for Health and Care Excellence (NICE) report into neurological problems from 2016, which Myaware is hoping to feed into.

Aims for the charity 

Some of the aims Ruth pointed out moving forward are:

  • Campaigning for medical exemption certificates as one third of people only find out about them through Myaware. I found out after a year and therefore was paying around £30 a month for those 12 months that I didn’t need to pay. 
  • To get accredited GP training to do with myasthenia gravis – whether that is via online training or a seminar
  • Building on this will be new information for medical professionals provided by Myaware – the charity is hoping to create postcards for members to give to medical professionals when being seen by them

More from this talk on research in my next blog.

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