What is important to people with MS?

Nicola Russell, Director of Services, MS Trust

Open Door - May 2009 page 2

What is important to people with MS is the question we are always asking ourselves at the MS Trust. Based on our dialogue with people with MS and health and social care professionals, we decide what to take as our main campaigning themes at any point in time. For 2009 we have decided to pursue:

Access to specialist services

We know from the research we did with the Royal College of Physicians (RCP) that when people have access to specialist services they find them invaluable, but we also know that for many people specialist advice is not available. We will be campaigning for an increase in the number of neurologists with an interest in MS, alongside more specialist nurses and therapists.

Access to all drug therapies

Tysabri is the latest drug to be made available for treating MS and yet even with a positive assessment from the National Institute for Heath and Clinical Excellence (NICE) it has taken some time for people to get access to this drug. In some centres there are still no patients on Tysabri, which is unacceptable. We will be campaigning to change this. In addition, NICE has recently indicated that it will be reviewing two new, as yet unlicensed, drugs - fingolimod and cladribine. The MS Trust will be submitting evidence to NICE as part of their assessment and we will be working to ensure that as soon as they are licensed they are available to people with MS.

Effective management of all bladder problems

All too often people with MS do not get good bladder management and continence problems can be hugely important in reducing quality of life. We have worked with a group of eminent health professionals from across the UK to bring the UK Consensus on the management of the bladder in multiple sclerosis to fruition. Once this is published, it will be important that we campaign for its implementation.

Comprehensive quality services across the UK

Our research with the RCP showed that implementation of both the NICE MS management guidelines and the National Service Framework for long-term conditions is at best patchy and access to neuro-rehabilitation is very inadequate across the UK. We will be working with the RCP to convince NICE, the Commissioners and the Care Quality Commission that implementation of these policy documents is a must if the NHS is to deliver a quality service.

Effective commissioning of MS services

The MS Trust led the group that developed the new MS Commissioning Pathway, a framework for commissioning MS and neurological services. We will be campaigning to ensure its acceptance across the UK. We will also be working with people with MS to develop the patient layer for the pathway thereby enshrining the requirements of people with MS into the commissioning process.

Access to competent MS specialist nurses and therapists

The MS Trust has been the lead organisation developing the Competency Framework for MS specialist services in conjunction with the Royal College of Nursing, the UK MS Specialist Nurse Association and the Therapists in MS group. There is now one document that lays out the expertise required by specialist health professionals regardless of their discipline. This will ensure standards amongst the professionals and also ensure that the managers in the NHS can see clearly what they are buying when they invest resources in specialist professionals.

It is evident from the list above that the MS Trust has some very definite campaigning objectives. If you have information on any of these topics, or have local data that could help our campaigning contact Nicola Russell at the MS Trust.

For more information, see the Campaigns page of the MS Trust website

Return