MS Trust conference report
Way Ahead 2012;16(1):12-13
The MS Trust's 15th Annual Conference took place in Kenilworth, Warwickshire in November 2011. The conference is the largest event in the UK for health professionals working with people with MS and attracts over 300 nurses, therapists and allied health professionals. The programme featured an array of high quality presentations and seminars. Here are some of the highlights.
The natural history of MS and implications for clinical practice
Professor Helen Tremlett, University of British Columbia Hospital, Vancouver, opened the conference with an overview of long-term natural history studies of MS in British Columbia. Data from this large cohort suggested progression of MS is slower than previously thought, which has implications for designing clinical trials and determining the long-term effectiveness of disease modifying therapies (DMTs).
Data demonstrated that by measuring time to outcomes from birth rather than from onset of MS men and women have similar disease outcomes (time to reach EDSS 6); an older age at onset is favourable; relapses do not affect long-term disability outcomes and early relapses only impact progression over the short-term. Whilst young patients with MS may gain long-term benefit from treatment with DMTs, older people may find limited benefit. Interestingly, MS relapse rates naturally decrease over time and a five year relapse-free period was common (occurring in 77% of people with relapsing remitting MS) independent of drug therapy.
The diagnostic process - what is changing?
Professor David Miller, UCL Institute of Neurology, London delivered the keynote lecture providing a summary of old and improved diagnostic processes for the various clinical forms of MS, in addition to acute demyelinating encephalomyelitis and neuromyelitis optica. He stressed the importance of accurate and early diagnosis to assist in timely management. In addition, diagnosis relies on evidence of disseminated CNS lesions in both space and time. Over the last decade, MRI evidence has been added to clinical criteria leading to earlier diagnosis for both relapsing remitting and primary progressive MS. Newer developments in MRI are revealing more detail, such as grey matter lesions, which may provide more accurate diagnosis.
New therapies in MS - how to decide
Dr Eli Silber, consultant neurologist at King's College Hospital, London focussed on the advances in potential therapies for use in relapsing disease. The main theme of the talk was how to obtain maximum benefit from the emerging DMTs in the treatment strategy, whilst balancing risk with clinical outcome. Dr Silber highlighted the lack of any significant breakthroughs which would change the outcome of progressive disease.
A team approach to palliative care
This interactive session was led by Dr Colin Campbell and Debi Adams who used examples from their experience in palliative neurology at St Catherine's Hospice in Scarborough. The audience was encouraged to consider how they would approach difficult issues around end of life care, advanced directives, the choices for people with MS and handling difficult conversations with both the individual and family.
Recent research and its implications for specialist services
Presented by Vicki Matthews and Nicola Russell of the MS Trust, the session covered research into the value of MS nurses (Defining the value of MS specialist nurses - scoping study) and focussed on practical ways in which nurses and therapists could use this information to promote (and defend) their services to commissioners. Although there is a direct financial saving from input by specialists, Nicola urged people to look at the impact of their service and how changes would have wider implications for both the recipients of care and the funding of NHS services. The session also looked at how best to present information on the financial impact of a service using the example of functional electronic stimulation and regional funding difficulties. Identifying the sub group of people for whom the treatment is beneficial reduces the actual cost to a reasonable figure and makes a stronger argument when trying to get funding.
Multidisciplinary management for patients with complex nutritional needs
Dr Anba Soopramanien, Dr Koko Naing and Claire Lewis, Glenside Neuro-Rehabilitation Hospital, Salisbury, discussed issues to do with percutaneous endoscopic gastrostomy (PEG). The physical aspects of what causes people to need a PEG were discussed and demonstrated by video clips. The team talked about the complexity of fitting a PEG and subsequent maintenance. They also highlighted, with the aid of fascinating case studies, the importance of understanding the ethical and legal issues to ensure the right decision is in the best interests of the patient.
Identifying and managing risks in MS
Dr Barbara Chandler, Raigmore Hospital, Inverness and Julia Johnson, Walkergate Park Neurological Services, Northumberland, led an interactive session looking at risk in a number of scenarios - from the perspectives of a person with MS and of health professionals, and issues around risk of suicide. The lifestyle and choices of the individual need to be factored into the evaluation of risks, eg a person with poor balance, living in a messy house may safely move around as they would know their way through the mess. However, the risks to others also needs considering such as safe driving ability. Delegates considered their own experiences in practice using case studies.
How to manage your own stress
Barbara Lynch, psychotherapist, Dublin, provided an enlightening workshop on the importance of looking after oneself when providing care for patients. Using a series of practical and contemplative exercises, delegates were invited to explore ways to help them care for themselves and their patients. Delegates considered their own stress response, used mindfulness and mindfulness based cognitive therapy and discussed transactional relationships in working practices. The delegates found the workshop incredibly valuable and felt it would help to change their reaction to stress.
Cognition in MS
Four interconnected sessions discussed issues related to cognition.
Jo Johnson, consultant neuropsychologist, West Sussex, explored the social cognitive difficulties that particularly have an impact on relationships and social functioning such as empathy, emotion perception and facial affect recognition. She touched on the effect this may have on family members and how health professionals, social support groups and positive role models can help.
Patrick Carroll, Southern Health NHS Foundation Trust, Southampton, provided an overview of cognitive impairment and work issues, people's rights and the Equality Act 2010. He stressed that making 'reasonable adjustment' is not just about installing ramps and parking spaces but providing rest periods and flexible working patterns. Patrick gave examples of case studies to illustrate his negotiations with employers.
Sally Kaiser, Robert Jones and Agnes Hunt Orthopaedic Hospital, Oswestry, defined the two-way relationship between cognition problems and depression, and Mary Yates, Birmingham Regional Driving Assessment Centre, informed delegates on the impact of MS on physical and cognitive aspects of driving and the requirement for driving assessment.
Sarah Joiner, Patron of the MS Trust, gave an insightful account of her 30 years experience of living with MS. Sarah's story revealed many personal aspects including the insensitive delivery of her diagnosis and the challenges of a working life with MS. She stressed that people need to fight for what they need so they can stay in work, including the Access to Work scheme and vocational rehabilitation. Sarah praised the practical support and advice that MS nurses and other health professionals give people with MS and stressed this should continue.
During the closing of the conference Nicola Russell praised the contribution and dedication of the MS specialists in delivery of services for the support of people with MS and expressed her hopes for the future. As this was Nicola's last appearance at conference as Director of Services for the MS Trust, she was presented with gifts and received a standing ovation for her 12 years of influencing change in services for people with MS. The TiMS and UKMSSNA groups also presented her with gifts to express their appreciation.
An Information Zone provided an exhibition-style forum to allow delegates to talk to representatives from a range of organisations and charities whose work could be of value to people with MS. These included Sportability, the MS Society Tissue Bank, Regional Driving Assessment Centres and the National Osteoporosis Society.
The poster competition was won by Jody Ofori, from the Peninsula College of Medicine and Dentistry University of Plymouth, with a poster presentation entitled: Factors influencing the applied torque during manually applied plantarflexor stretches in people with MS.
MS specialist nurse Gail Hayes received the 'MS Trust Lifetime Achievement Award' in recognition of her immense contribution and dedication to people with MS and developing services in Exeter. Nicola Russell expressed her gratitude for the enormous amount of time Gail has given to the MS Trust.
A new 'NHS challenge award' was given to OT Ros Edwards from Berkshire, who "remembered to say 'no' to accepting additional work" when her contractual hours were reduced. Thankfully, the NHS decision has been reversed and she has resumed her full-time role.
In addition, well-deserved prizes were presented to:
- Nikki Embrey for MS and me: a self management guide (which was highly commended in the recent BMA Patient Information Award)
- Fiona Barnes for Relapses (Open Door May 2011:10-11) and her other supportive activities for the MS Trust
- Wendy Hendrie for Standing in the management of MS (Open Door November 2010:8-9)
- Stephanie Maw for her article The impact of NICE guidelines on diagnosis (Way Ahead 2011;15(4):6-7)
- New MS specialists Lindsay Harrison and Claire Bentley were given awards for performing exceptionally well in the MS Trust Development of MS care and management for specialists module
- Jane Nicklin (joint Chair of TiMS) for commitment, inspiration and leadership.