MS Nurse Support Programme

A key part of my role at the MS Trust is influencing and informing decision makers on the complexity of MS care, on behalf of all MS specialist nurses.

Vicki Matthews, MS Nurse and Specialist Nurse Advisor at the MS Trust

Supporting MS nurses - a timeline

The MS Trust has campaigned for everyone with MS to have access to an MS specialist nurse since 1996. Some of our most pivotal achievements are detailed below:

1996 Agreed at a meeting with the Royal College of Nursing (RCN) to act as the hub for MS nurses across the UK.

Launched the MS Nurse Forum, an independent network of MS specialists.

1997 Published the first edition of our Way Ahead newsletter, giving a voice to MS specialist nurses.

1998 MS Trust took on the role of providing all education and ongoing support for MS specialist nurses.

2001 Funded and published research on the value of an MS specialist nurse (Johnson et al). First and only research to show a cash saving from the introduction of an MS specialist nurse.

2001 Launched a publication entitled the "Key elements for developing MS specialist nurse services in the UK" in conjunction with the RCN and the UK MS Specialist Nurses Association (UKMSSNA). Major launch meeting in House of Commons hosted by Paul Burstow the current Minister of State for the Department of Health, with a foreword by HRH the Prince of Wales. Within this document was a definition of the role of the MS specialist nurse which is still valid in 2011:

"To empower those affected by MS by providing information, support and advice about the condition from time of diagnosis and throughout the disease spectrum. The MS specialist nurse is pivotal in providing a greater understanding of the condition, and by adopting an holistic, collaborative and coordinated approach can help those individuals, where possible, reach their goals of self management.

"The role also involves acting as a consultant and educational resource for staff striving towards greater awareness and knowledge of MS in the health and social arena."

2003 Launched and published "Competencies for MS specialist nurses" in conjunction with RCN and UKMSSNA. Major London launch with Baroness Cumberlege as key note speaker.

2005 Received the "Thumbs Up Award" from the International Organization of MS Nurses, for being instrumental in advocating and promoting MS nursing.

2006 Initiated and led a meeting in the Department of Health of all key stakeholders to agree the value of MS specialist nurses in the face of cuts due to Agenda for Change. Outcome was a key position statement agreed by all parties including the Association of British Neurologists, and the UKMSSNA.

In partnership with the Royal College of Physicians, the MS Trust commissioned a survey of MS health services to help us better understand what is available and to identify the needs of people with MS.

2008 Undertook a second national survey of MS services, in partnership with the Royal College of Physicians, which highlighted serious inadequacies in provision of specialist services for people with MS.

2009 Launched Competencies for MS specialist services in conjunction with the RCN and Therapists in MS.

Launch of MS Commissioning Pathway with a programme of direct lobbying.

2010 - 2011 MS Trust specialist nurse advisor sits on the National Leadership Group for Long-term conditions to highlight the needs of people with MS.

MS Trust specialist nurse advisor sits on RCN Neurology Forum and MS used as the specialist nurse example in their campaign.

Several publications in a variety of journals emphasising the value of MS specialist nurses including British Journal of Neurology Nursing, British Journal of Wellbeing and Nursing Standard.

The MS Trust and the Royal College of Physicians are working together again to conduct our third survey of MS services across England and Wales, to see whether the NICE 2003 MS Guidelines have been implemented.

UPDATE (September 2011): The MS Trust has funded further research into the value of MS specialist nurses to the NHS, which proved amongst other things that many nurses have excessive caseloads and that there are still areas of the country without MS specialist nurse cover. As a result of this research the MS Trust is now building a detailed map of the MS specialist nurses in relation to the population of people with MS and where people with MS live. We will be using this data to campaign for better access to MS nurses and to help us work with individual teams to fit their services within the new NHS framework.

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Any donation you can give towards our MS Nurse appeal will make a difference for people living with MS now. Your donation will help to fund our work supporting MS nurses.

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