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How can we make MS care fair for people with progressive MS?

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MS Forward View is our project working with NHS experts, MS teams and people living with MS to shape fairer specialist services.Daisy Doncaster, the project co-ordinator, explains how we exactly we intend to make a difference, particularly for people with progressive MS

As you may have heard, it’s MS Awareness Week and here at the MS Trust we’ve been busy with our awareness campaign Let’s Make MS Care Fair.

This week we published a report based on survey responses of nearly 2,000 people with MS from across the UK. The report highlights that many people with progressive MS feel as though they are not receiving the care they need. Some even said they feel abandoned by MS health professionals. The data, reported to us directly by people with MS, shows that MS care currently isn’t fair. Despite the fact that almost half of the people with MS in the UK have a progressive form of the disease, we have found that these people see MS specialist nurses and neurologists far less often (sometimes rarely ever) than people with the relapsing remitting form of MS.

In addition, we have found – through the survey and our ongoing work with health professionals – that the provision of MS services at a regional level is very variable. While some areas are well provided for in terms of MS specialists, others are significantly lacking.

What is the MS Trust doing to make MS care fair?

In November 2015 we launched our MS Forward View project, which aims to identify the priorities needed for the MS sector to deliver efficient, effective and accessible services for everyone with MS, regardless of the type of MS they have, or where they live.

At the heart of this project is the ethos of equitable care. Put simply, we want people with MS to receive “the care they need and no less, and the care they want and no more”.

Treatment for MS is evolving. We want to support the prescribing of disease modifying drugs (DMDs) for those who can benefit, but we are conscious of the additional workload that DMD monitoring puts on MS nurses and of the fact that these treatments are only available to people with relapsing remitting MS. Although NICE guidance and Quality Improvement Scotland standards call for annual specialist reviews for everyone with MS, we know, from our extensive work in this area, that there is a shortfall in MS nurses and increasing pressures on their time.

MS Forward View has brought together an expert group of doctors, nurses, educators, workforce experts, industry representatives and people with MS, to understand the issues and barriers facing MS services, and how capacity may be created to help make MS care fair.

How is MS Forward View involving people with MS?

In December 2015 we recruited three people with MS to join the project’s Advisory Group, to represent the views and experiences of people with MS. (Read more about Amy, Pia and Caroline) In February 2016 we invited people with MS to join an online forum to support Amy, Pia and Caroline, and give us a better understanding of the experiences of people with MS, and carers too, from across the UK. We received an overwhelming number of applications, and eventually decided on a group of 65 people.

The forum was set up in early March and has been very active. We ask the group for their feedback and experiences, and the group have provide in-depth insight into how services work, from the vital perspective of people actually using them. This is, of course, essential to our project.

Comments from the forum include:

“We’re like the submerged part of an iceberg – so many hidden from sight.”

“My MS nurse is brilliant. She is always quick to respond to any queries. Can’t praise her enough.”

“A message to MS professionals: If you’re looking to provide me with effective support then please listen to me, I understand ‘my MS’ better than you. I need a flexible approach. I want one plan, agreed and shared with me, my family/carers, my GP and my MS team.”

“I have a good team who support me. They all seem to work together well, and I feel my MS nurses help to coordinate things.”

“A multidisciplinary team would seem the ideal and it would… ideally [include] a pharmacist to monitor and provide independent evaluation of treatments at all stages of MS. [However,] I fear I'll see a flying pig before I see such an approach! I feel we have to accept that the NHS has many competing claims on its limited resources. The argument we need to make to get an approach like this is that not only is [it the] gold standard in care, but [that it] is also cost effective.”

What will the project achieve?

We aim to achieve the following outcomes:

For people with MS:

  • Better information about available MS services
  • Clearer expectations about NHS MS services
  • In the long term, more efficient, effective and accessible access to care for everyone with MS

For MS services:

  • Improved understanding about how to make the best use of current resources
  • Greater agreement on the priorities for sector-wide improvement
  • Better awareness of the needs of everyone with MS

For the NHS:

  • Insight into the challenges of implementing the NHS 5 Year Forward View for people with MS
  • Clear understanding of agenda for change in MS services
  • In the long term, more cost-effective investment in MS services

What difference will MS Forward View make for people with progressive MS?

As the results of our survey show, many people with progressive MS feel as though they are being overlooked by MS health professionals. With MS Forward View we will highlight the actions needed to deliver quality care to everyone with MS.

We will raise awareness of this issue and outline how services may reorganise their existing time and resources to better support people with MS.

We will also look in more depth at the variety of services and resources that people with progressive MS need, which are often different to those of people with relapsing remitting MS. We will look at the variety of health professionals (physiotherapists and rehabilitation specialists, for instance) who can help, and identify the appropriate areas for change.

Although it is essential that we look at how care might be improved for people with relapsing remitting MS as well, we are really concerned that people who are not on treatment, and whose physical needs may be increasing, do not feel adequately listened to. Quite simply, it is vital that no one with MS feels as though they cannot access the care they require.

The MS Forward View project is a strong step in the right direction toward equitable and quality care. MS care in the UK is changing, and there is certainly a great deal of scope for improvement and positive change. I believe this project offers real hope for the future, with plans for change led by people living with MS. We will be publishing our findings from the project in September – so watch this space!

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