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Way Ahead Volume 18 Part 3 (July 2014)

Concerns about draft MS Clinical Guideline

Amy Bowen, Director of Service Development, MS Trust

In April 2014, the National Institute for Health and Care Excellence (NICE) put out its draft Clinical Guideline on the The managmemt of multiple sclerosis in primary and secondary care for consultation. The MS Trust is deeply concerned about some of the recommendations made, and omissions from, the Guideline and how usable the document will be. We are also concerned it may give those who commission services the impression they can reduce service levels.

Highlights from the RIMS 2014 Conference

Alison Whittam, Information Officer, MS Trust

In early June, the MS Trust co-hosted the 2014 RIMS (Rehabilitation in MS) Conference alongside University College London Hospitals Foundation Trust. The theme of the conference, which was being held in the UK for the first time, was Supporting behaviour change, linking science to clinical practice. This article picks out some of the highlights of the conference including:

  • Factors influencing behaviour change. Jared Bruce, University of Missouri, USA
  • The patient perspective: what is behavioural change about and how does it manifest in 'real life'? Shana Pezaro, Trustee, The Federation Centre for Independent Living; Emma Rogan, Project Coordinator, European MS Platform
  • RIMS Honorary Lecture by Professor Alan Thompson, Dean, UCL Faculty of Brain Sciences, University College London, London.

Setting up an alemtuzumab(Lemtrada) service: the Cardiff experience

Gail Clayton, Lead MS Clinical Nurse Specialist, University Hospital of Wales, Cardiff

Alemtuzumab is an anti-CD52 humanised monoclonal antibody treatment for relapsing remitting multiple sclerosis (MS) that works by depletion, and subsequent repopulation, of circulating T lymphocytes and B lymphocytes. It demonstrated significant efficacy as a treatment for relapsing remitting MS in an open label, phase II and the phase III CARE-MS I trial, and demonstrated superiority over interferon beta 1a in the phase III CARE-MS II trial. Administered over the course of two years, the treatment requires infusions over five consecutive days in the first year, followed by three consecutive days a year later.

This article provides information on setting up an alemtuzumab service; explores patient selection and pre-treatment counselling; discusses infusion-related, and long-term, side effects; outlines monitoring requirements; and identifies potential challenges.

Introducing FACETS into practice: an evidence-based group fatigue management programme

Vicky Slingsby, MS Specialist Occupational Therapist, Pool Hospital NHS Foundation Trust, Poole

FACETS (Fatigue: Applying Cognitive behavioural and Energy effectiveness Techniques to lifeStyle) is a manualised, group-based intervention for the management of fatigue that incorporates energy effectiveness and cognitive behavioural approaches. This article looks at how the programme was developed and evaluated. It gives details of the course content and how FACETS has been integrated into practice by the team in Poole.

Life on hold: the experience of living with neuromyelitis optica

Kerry Mutch, Neuromyelitis Optica Service, Walton Centre Foundation Trust, Liverpool

Until recently, neuromyelitis optica (NMO) was viewed as a severe form of multiple sclerosis (MS) and was treated similarly. However, Lennon et al identified a specificantibody against the antigen aquaporin-4 (found in 70% of people with NMO) which has led to an increased understanding and the knowledge that NMO is a separate disease to MS. This article reports on a study of a group of people living with NMO.

MS specialist nursing in the UK: results of a survey

Geraldine Mynors, GEMSS Facilitator, MS Trust

Between the 10 March and 10 April 2014, the MS Trust carried out a self-report survey of all specialist nurses working in MS recorded on their database.

The survey was conducted to:

  • confirm the number of MS specialist nurses in the UK
  • clarify any differences between the number of posts(headcount) and whole time equivalent (WTE) workforce
  • indicate whether there is a shortfall in MS specialist nurse posts
  • describe the balance of funding for MS specialist nurses between the NHS and other sources
  • identify the current challenges facing UK MS specialist nursing
  • identify regional variations in the provision of MS specialist nursing across the UK.

This article describes the findings of the survey.

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