MS Trust Report
"Making it happen"
This was the theme of this year's conference, and thanks to the high quality of the interesting presentations and enthusiastic participation of all delegates, the return of the MS Trust conference to Leeds was very successful.MS commissioning pathway
The conference kicked off with an overview of MS commissioning pathway by Steve Laitner, Consultant in Public Health Medicine for West Herts PCT, setting it in the context of government initiatives for supporting people with long term conditions. The pathway describes the key interventions in the care of people with MS from initial presentation and clinical assessment through to specialist referral, diagnostic tests and ongoing treatment. While the pathway is aimed at commissioners of health services, Dr Laitner anticipates that it can also increase patient empowerment by setting out the services that people with MS should expect. He stressed the importance of involving people with the relevant condition in planning local services and the importance of health professionals getting to know their local commissioner.
Telehealth – the future?
Telehealth offers the potential to provide improved access to health care for remote areas and to promote patient self-management. Deborah Miller Associate Professor of Medicine at the Mellen Center for MS in Cleveland, Ohio, described the evolution of an internet-based service that allows participants to monitor their MS symptoms, make decisions about important changes, communicate in a secure, electronic way with their MS clinicians and advise clinicians about their agendas and questions for imminent appointments. Key aspects of the project were to provide a secure environment to ensure confidentiality and to set limits to the use of the messaging system. The project has now ended and analysis is underway; the initial impression is that the system has been well accepted and has encouraged self-evaluation and self-management.
Bernadette Porter, Nurse Consultant at the National Hospital for Neurology & Neurosurgery in London, picked up this theme by reflecting on the advances made in the management of MS over the last ten years and making a clarion call to all health professionals to look forward to new developments we must put in place over the next ten years to leave as a legacy for the new generation of health professionals. These might include innovative ways to use new technologies such as teleconferencing, telepresence, and teleneurology and Bernie described a number of projects which are already making progress in these areas. She stressed that information technology should be used to complement clinicians, not as a substitute and should improve the quality of care provided for those affected by MS.
Stem cells
The potential for stem cells as a treatment for MS continues to generate considerable interest. Professor Neil Scolding, Chair of Neurology at the Frenchay Hospital, Bristol, provided an excellent overview of our current understanding of how stem cells might mediate repair and replacement following axonal damage and loss. He summarised the current evidence for the effectiveness of adult autologous bone marrow stem cells and gave an update on the proof-of-concept safety study currently underway in Bristol.
The MS bladder
In February this year, a meeting of stakeholders involved in patients' continence care was convened to review the management of bladder problems with the objective of formulating a UK consensus for investigating and treating this very common symptom of MS. Clare Fowler, Professor of Uro-neurology at the National Hospital for Neurology and Neurosurgey, London, presented the resulting guidelines which have been formulated according to degree of disability. She emphasised that in most cases bladder problems could be investigated using simple, non-invasive tests and treated with anticholinergics in combination, if necessary, with clean intermittent self catheterisation. The evidence for other strategies for treating more intractable bladder symptoms, particularly in those more severely affected by MS, were also reviewed by the group and incorporated into the guidelines.
Information zone and posters
The Information Zone, a new feature of this year's programme, provided an exhibition-style forum for delegates to talk with and gather information from representatives of organisations providing a range of services relating to personal development, service provision and clinical practice.
Running in parallel with the information zone, the poster session was well attended and generated a great deal of enthusiastic discussion. The standard of the posters was very high and the following were awarded prizes:
- Jo Johnson and Lisa Black won first prize with Men are from Mars, an account of building a group for male relatives of people with MS in West Sussex.
- Tom Kirkham and Jacqueline Stevenson were runners-up with Living and dying with MS in Newcastle upon Tyne, an audit of life expectancy and the implications for service provision in the region.
- Kathy Franklin, Rebecca Barraclough and Fiona Cray were runners-up with Development of a patient health information file for people with MS in the UK, a resource designed to help people record and manage their care.
- Val Trimble in recognition of the Way Ahead article "Management of Diplopia in MS"
- Lou Jarrett in recognition of the Open Door article "Spasticity and Spasm"
- Helen Willis best Development Module in Clinical MS student 2007
- Wendy Hartland for contribution to an MS Trust publication "Falls – Managing the ups and Downs of MS"