In our patch of East London if you have MS and live in Newham you get a very poor service; for example, you are 3-4 times more likely to require an emergency or non-elective hospital admission compared to if you live in Tower Hamlets or Hackney (our local London boroughs).
We think the main reason is that there are no community-based MS clinical nurse specialists in Newham. We have been trying to progress a business case for a nurse post at Newham. The business case was due to be primed by the MS Trust and partly covered by the Newham CCG (clinical commissioning group), but as Barts Health is essentially bankrupt they won’t sign off on their part of the deal, i.e. to continue to fund our contribution to the post after two years.
Our Trust is in special measures which mean external bean counters (consultants) come in and block all non-essential services or spend. This is all part of our CIPs (cost improvement plans) to make our NHS Trust financially viable. They don’t really care about MSers living in Newham who will continue to need admission for UTIs, falls, fractures, faecal impaction, pneumonia, pressure sores, etc. The MS Trust has data that shows that within the first year of specialist nurse appointment unplanned or emergency MS-related hospital admission fall by over 40%. In other words, MS clinical nurse specialists pay for themselves and at the same time improve the quality of life of their patients and families. Barts Health NHS don’t care. It is shameful that we such local variation in MS services.
Variations like these in local and regional MS services is one of the reasons why we are holding a meeting on ‘MS Service Provision in the UK; the Way Forward‘ in Birmingham on the 1st and 2nd of November. We will hopefully tackle thorny issues such as the above. Another issue is why do MSers in socioeconomic groups 4 & 5 not get the same services compared to MSers in socioeconomic groups 1, 2 & 3? Why can’t MSers who are referred into specialist services from DGHs (district general hospitals) get a more prompt service? Why are they worse off than MSers who are managed directly by the specialist centre? Why do MSers with relapsing-MS get a better deal than those with more advanced or progressive MS? These are just a few of the questions we will attempt to answer at this meeting.
The good news is that the response to our meeting has been overwhelming with representatives from all over the UK. I sincerely hope we can come up with some common sense solutions to the issues raised. At the end of the day, we simply want to get rid of post-code prescribing and inequity in MS service provision across the UK.
|UK Centres signed-up to attend the variation in MS Services Meeting
We plan to record the talks and some of the discussions from the meeting and put them online. We will let you know when this happens as well as the outcome of the meeting.
We need a wider debate about how we want the NHS to evolve and how MS services are delivered.