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A vision for the future of MS services

Nicola Russell, Director of Services, MS Trust

Way Ahead 2010;14(2):4-5

With a general election on the horizon many of us are asking: what will it mean for people with MS and the health professionals who work with them? What lessons of the last decade can we use to further develop services over the next decade?

When Lord Darzi was invited by the then health minister to lead the next stage of the NHS review in 2006 it was evident that the heavy investment made by Labour had failed to bring about the change that they wished for in terms of productivity.

It is hard to remember now, but when Labour came to power in 1997 the investment in the NHS was £33bn per annum. Now, 12 years later it is close to £100bn and yet episodes such as the recent report of deaths at Mid Staffordshire NHS Trust are still happening, and found plastered across the front of our daily newspapers.

In a way an event such as this demonstrates exactly the problems that any political party will have, namely:

The NHS is a huge organisation and to effect change requires significant time - quick change is not feasible. (The NHS is the third largest employer in the world, only the Indian railways and Chinese armies are larger).
The media will always focus on the negatives and bad health stories sell newspapers.
Local MPs often have to take the side of their constituents if they want to get elected even if the policy of their party may be different.

Add to this the fact that the 24/7 media activity has a tendency to ignore the value of history as the basis for future planning, and the fact that in most organisations there is no 'organisational memory' and we are potentially at risk of making wrong decisions.

How can we maximize the opportunity generated by a general election and avoid mistakes to ensure that the huge progress made over the last decade in MS services is not derailed but used as the springboard for future positive developments?

In what follows, I have tried to outline a wish list for the next ten years. I believe that if we can achieve this, it will be to the benefit of people with MS and also the health professionals reading this article who work with them. In drawing up this wish list I fully accept the challenges posed by working with a patient group where disease progression is in some cases inevitable.

An MS wish list for the next decade

Quality was identified and brought to the top of the political agenda and this must remain the critical element. Quality is what you provide as clinicians and we know it is valued by patients. Quality enables clinicians to play a role in the development of services, and this is critical. Managers/commissioners who have no real understanding of what it is like to have MS cannot take decisions alone - they need input from clinicians who do understand.
The number of specialist centres must continue to grow from the current 70+ to allow people with MS to get access to services closer to their home. However, it is accepted that with a specialist condition such as MS we have to balance the need for specialist centres with multidisciplinary teams to provide support to everyone with MS, against geography. People with MS are willing to travel for good services.
The number of MS specialist nurses must grow from the current 230 to 330. MS specialist nurses have the ability to make a huge difference for people with MS and the MS Trust will continue to lead the campaign we started in 1997 for more specialist nurses across the UK. An increase to 330 specialist nurses would allow caseloads of around 300, which should be manageable. Many of the current specialist nurses have completely unmanageable caseloads. It is encouraging to see that the Royal College of Nursing shares part of this ambition and has recently been campaigning to keep specialist nurse posts as a means of adding value to the NHS.
New drugs on the horizon must be assessed quickly by the National Institute for Health and Clinical Excellence (NICE) once they are granted their licence, and introduced effectively into the NHS.
The Department of Health Risk-sharing Scheme is the legal framework for the prescription of the original disease modifying drugs. Health professionals and people with MS have benefitted considerably from it and early termination must not be considered without ensuring that access to MS treatments and services are legally preserved.
The number of therapists specialising in MS must increase and the Therapists in MS group, now an active force in MS management, must continue to develop new ideas of benefit to people with MS and the NHS.
More money must be allocated to MS services. Neurology in total and MS specifically remain cinderella services in comparison with other serious conditions such as cancer, and all of us involved need to campaign for greater resources. For example only approximately 14% of the MS population is receiving drug therapy in the UK, unlike Europe at 25-30% and the USA at 50% or more. Why should the UK have a second class service?
Clinicians must be given the time and support to develop innovative ways of working that will improve their work environment, improve services for people with MS, and even save money for the NHS. For example how can clinicians use new technology to improve patient outcomes? When people with MS are first diagnosed they tend to be young and already confident users of new technology that has the potential to reduce administrative drudgery for health professionals as well as ensure that their symptoms get managed quickly before they have caused irreversible problems.
Adequate educational support must be provided for specialist and generalist health professionals. The NHS has failed to fund professional development for far too long. The Risk-sharing Scheme has provided significant resources for the specialists and the provision of professional education is one of the MS Trust's charitable objectives, but to deliver a really top quality service the NHS must fund professional development.
Further research must be undertaken into topics that are of direct relevance to people with MS. For example: quality of life for people with MS; the importance of exercise; and the implementation of the NICE MS management guidelines.
Health professionals and managers must involve people with MS in the development of services. The MS Trust has developed an MS pathway for commissioners and will be adding a patient layer to this pathway during the course of 2010.

A list of this magnitude can make one feel defeated before the start, but this is where history can help. Many of the items above have already been started and with further effort we can bring them to fruition.

At the MS Trust we are committed to working with health professionals to deliver joint objectives and we would welcome hearing from you if you have an example of how innovative practice in your area has improved services for people with MS, or improved your working processes. Sharing good ideas has to have positive outcomes. Equally, if you have tried an idea and it failed, then why not share this as well? We only learn by making mistakes and we don't want to re-invent the wheel if someone else has already tried an idea and shown it to be worthless.