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10 years of making a difference

MS Trust Tenth Annual Conference

2-4 November 2006, Bournemouth

Way Ahead 2007;11(1):14-15

The cliff-top location of the Bournemouth International Conference Centre provided the setting for the MS Trust Tenth Annual Conference. The high quality and wide-ranging topics covered in the plenary and seminar sessions combined to make this a highly successful and stimulating event.

A talk during the conference

Opening plenary: Ten years on…

The opening presentation was delivered by Guy Cross (Workforce Capacity, Department of Health). He explained how demographics have driven government policies in planning for the management of long-term conditions. An increasingly ageing population, patients wishing to take a more active role in managing their own conditions and changes in workforce demographics and career patterns have all influenced moves to transfer services from secondary to primary care.

Professor Alan Thompson (Clinical Director and Consultant Neurologist, National Hospital for Neurology and Neurosurgery) reminded the delegates of the huge progress made over the last ten years and looked at what is next in the following areas:

  • underlying disease processes;
  • diagnosis;
  • treatment; and
  • management.

He concluded that people with MS are significantly better off now with the advent of interferons and other drugs, and whilst MS is now a manageable condition, there is still scope for further evolution in the management and treatment of MS.

Candy Cooley (Palliative Care Development Manager, Worcester) closed the session, giving her perspective as both a senior health service manager and a person who has MS. She challenged the assertion that people (with or without MS) want more choice and emphasised the importance of listening to the needs of people with MS, to help them stay in control of their own lives and maintain their role in society.

Keynote lecture

Dr Fred Foley (Director of Neuro-psychology and Psycho-social Research, USA) gave a comprehensive overview on improving mood, coping skills, cognitive changes and sexual function in MS in this year's keynote lecture. In particular he looked at depression as a major symptom, with an incidence of 50-60% in people with MS. Dr Foley was keen to stress that this is a symptom that is extremely responsive to treatment with either drugs or cognitive behaviour therapy, or a combination of the two approaches. He also described several types of coping: problem-focused, emotion-focused and benefit finding, whilst highlighting the potential for family problems when coping skills differ. Cognitive changes can have a big impact on work status; therefore a number of behavioural and organisational strategies, as well as drug treatments were discussed. Finally, the epidemiology, causes and different approaches to treating problems with sexual function were addressed.

Risk versus benefit in drug development

MS is a very variable disease with no reliable predictor of how an individual's MS will progress. With the advent of new, more aggressive anti-inflammatory agents that carry with them the risk of serious adverse effects, the need to balance risk against the benefit of these new treatments is one that people with MS increasingly have to face.

Dr Steve Hobbiger (Vice-President, Faculty of Pharmaceutical Medicine) opened the second plenary session with an overview of drug development from test tube to treatment. Only one compound in 1,000 explored makes it through the development process, which takes 10 years and costs £1 billion. Furthermore, only 1 in 4 of these new drugs will be a significant commercial success. Once a drug is on the market, safety becomes the main focus.

Dr Patrick Waller (Consultant in Pharmacoepidemiology, Southampton) described how safety is monitored; the large numbers of people needed in studies to reliably predict safety, the risk-benefit balance and approaches to prevention of harm caused by medicines. Finally, Dr Mike Boggild (Consultant Neurologist, Walton Centre) proposed that the time is now ripe for a paradigm shift in MS management. He argued that MS is a risky disease, but that we are now in a position to identify those with 'poor prognosis' MS for whom the benefits of early treatment may outweigh the risks associated with the newer therapies.

Seminar sessions

As ever, the three seminar sessions covered an interesting array of topics, with a particular emphasis on the following areas of practice:

  • symptom management and preventative measures;
  • service development and evaluation;
  • future opportunities and challenges.

Several of the sessions proved to be thought-provoking and challenging, with particularly enthusiastic audience participation seen in the sessions on 'Sex: how far should you go?' and 'Ethical issues surrounding vulnerable adults'.

Closing session

"It takes one sentence and probably 10 seconds to tell a person they have MS …and a lifetime to deal with it. You can measure health professional's input in hours. My life is in years." Ben, 34

The final session of conference involved three experts from the disciplines of nursing, physiotherapy and neurology all of whom have been closely involved in the development of services in their localities.

Bernie Porter talked about the focus, scope and depth of specialist practice. She made the point that clinical practice is now starting to catch up with the science of MS and that modernising and developing services is not an option but a necessity if health professionals are to provide good services for their patients. At the National Hospital they now have an electronic 'patient experience tracker' which allows people with MS to give their views on the service they receive, these comments are used to guide service change. Specialist nurses have a pivotal role to play in MS management but they must collect the evidence for their effectiveness, and improve the research methodologies.

Christine Singleton reminded everyone that originally the NHS operated a self-help model of care not a self-care model of help, which was a critical distinction. As stated in the NICE MS management guidelines the following therapists should be involved in MS management: physiotherapy, occupational therapy, speech and language therapy, dietetics, chiropody, and orthoptics.

Eli Silber commented that in the current NHS looking to the future could be renamed "what the heck is coming". He emphasised that axonal loss is greatest in areas of active demyelination but also occurs in normal appearing white matter. He was emphatic about the lack of evidence for both stem cells and goat serum but very positive about some of the new drugs on the horizon, particularly Fingolimod (FTY 720). People with MS deserve access to drug therapies and good services and health professionals need to work as a team to deliver what they require.

Prize winners

Congratulations go to the following:

  • Sophie Baxter, MS specialist OT - winner 'Best Development Module in Clinical MS Student in 2005' prize.
  • Lynda Hind, Neurological Nurse Specialist and Jane Roberts, Speech and Language Therapist - joint winners 'Best poster' prize.
  • Nikki Embrey, Clinical Nurse Specialist (MS) - winner 'Best Way Ahead article written by a nurse' prize.
  • Cindy Davis, Senior Physiotherapist - winner 'Best Way Ahead article written by a therapist' prize.

A special mention also for Gail Townsend, Research Occupational Therapist and the South Central MS Specialist Nurse group whose posters were highly commended.

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