David's diary: My five wishes for the MS community

This week we were excited and proud to run our first in person conference since 2019. The MS Trust conference is a must attend event for all health professionals with an interest in multiple sclerosis, to learn about the latest thinking and treatment options in the sector. 

MS Trust CEO David Martin opened the conference by setting out his priorities for the MS community in the year ahead. Read on to hear what they are and what the charity has been working on in recent months. 

As you may already know we are the only charity placing additional MS Nurses into the NHS MS Nurse programme. After pausing our programme during the pandemic, we are back up and running and have now placed eight nurses into the NHS and we are confident we will be in double figures by the summer. However, we know there is still much more to do.  

We are also kick starting a second wave of our Advanced MS Champions, who are a vital resource for those living with Advanced MS. They provide specialised and coordinated care across different services, ensuring timely referrals to relevant health and social care professionals.  We have seen early evidence surrounding the difference these posts have made already and will be publishing the full results in May - so watch this space.

I want to ask you a question. Do the MS Trust listen enough? I hope we do, but I sometimes wonder whether we can do more. So, one of the new things we are launching at the MS Trust is a project called MS Voice. As part of this project, we are engaging with more and more people right across the UK to get an even better understanding of what it’s like to live with MS. We also want to find out exactly what people affected by the condition want us to do, and how we should be doing it. Personally, I think this project is really exciting, although we might find we have a few surprises in store too! We’ll be sharing some initial findings in MS Awareness week, later in April.  

While the MS Trust is as busy as ever working to support people living with multiple sclerosis, there are many elements of MS care that are still not good enough. I fear that life for people living with MS has worsened since the start of the pandemic.  According to the results of our recent nurse mapping survey, there is a national shortage of 149 MS Nurses. This just isn’t good enough, and we are working hard as part of our Specialist Nurse Programme to place more nurses in the areas of greatest need. 

Here’s another stat that shocked me when I first heard it. While there is currently no cure for MS, the arrival of the dozen or so disease modifying therapies has been great news for the multiple sclerosis community. In England however, access to those MS drugs varies from just 52% to 67% in different regions, which is appalling. There is a postcode lottery for MS services up and down the country in all the home nations and I fear that the situation could get worse, unless neurological services are made a priority. 

I was chatting to my dad the other day. He asked what would I ask for if I was granted five wishes for the MS sector and that really got me thinking. After some thought, here are my five wishes: 

Number one goes without saying and is a wish I’m sure I share with all of you. I’d like for there to be a cure for this horrible disease. 

Number two, appropriate community rehabilitation services for people with neurological conditions should be made more readily available. In the longer-term, a right to rehab on the NHS which allows people to access support to maintain their health and wellbeing and prevent deterioration should be created. 

Thirdly, we should ensure that every patient with a neurological condition, including MS, has access to a specialist nurse, working within a team of professionals, with the skills to meet their needs. 

The fourth thing would be that the roles of Advanced MS Champions created by the MS Trust should be embraced across the NHS. Our first pilot has already demonstrated how they significantly increase the quality of life of people living with MS, while at the same time saving the NHS up to £250k per role per year. They have the potential to be real game changers. 

And finally, neurology services must be prioritised as the NHS rebuilds itself after the COVID-19 pandemic. We urgently need resourced plans to restore and improve neurology services in each UK nation, harnessing innovation, data and technology to ensure everyone with MS has access to the right professionals and treatment at the right time. 

That’s all from me for now, thanks for reading and for your continued support. As MS Awareness Week is fast approaching take a look at our web page to find out more information on our plans for the week and do get involved if you can.