Tuesday, 29 April 2008

Multiple sclerosis: small steps

Local MS Society branch shows the way

Publication of a smart, confident brochure by the North West Region of the Multiple Sclerosis Society gives further testimony that, whatever the MSS national body in London is doing to investigate Conductive Education as a serious service-delivery initiative in the United Kingdom, people on the ground want something done, now.

Last month Conductive Education World announced that the Multiple Sclerosis Society is to spend £2.5 million over three years on researching ‘symptom-relief’’:

There is real hope of developing much more effective treatments… Many MS experts believe that in our lifetimes MS remains long-term but is largely treatable…. It seems likely that early diagnosis and intervention with a combination of drug therapies, physiotherapy and exercise, good diet, counselling and quality social care will be the answer.

Better drugs plus the mixture as before, but no acknowledgement of Conductive Education, though, it was hardly as if the Society was unaware of this approach or the enthusiasm for it amongst its members at branch level.



Pilot project

Meanwhile in Liverpool, a partnership between the Neurosupport Centre and the North West branch of the MS Society had run a pilot Conductive Education program. The actual conductive service was provided by one of the new private-sector Conductive Education consultancy services, László Szögetczki’s Independent Conductive Education Services, and involved six people with multiple sclerosis who attended twelve three-hour sessions over six weeks.


The pilot project was reported last summer in the North West Region's newletter, in both paper and electronic editions. At the end of last year it was further briefly reported in Recent Advances in Conductive Education. This report’s Abstract read as follows:

A support-centre manager describes what was involved in setting up a pilot programme for people with multiple sclerosis: a casual meeting led to investigating how to access the system; identifying a conductor to do the work raised the need for institutional support and practical arrangements; participants had to be identified, a course of sessions inplemented and participants' responses' sampled. On the basis of this programmatic approach a wider intervention may ensue.

Now the Region has published a further account, in the form of a booklet or pamphlet. The booklet elaborates a little on the informal qualitative evaluation of this pilot experience. It presents the personal reflections of three of those who participated: a husband/carer who was one on the two volunteers who helped run this project, a gentleman with primary progressive MS and a lady with secondary progressive MS. Common to their response were (differently expressed) awareness that this was something more that treating a disease, and enthusiasm to continue and extend the Conductive Education experience.

More than that, the booklet comes with a five-minute DVD that extends and amplifies the material in the booklet (including contributions from László). Like all such films the need for visuals does rather result in emphasis upon the motoric but all in all this is an eloquent statement of the depth of feeling for Conductive Education amongst those who took part in this project, and strong advocacy for taking this work forward.

Just the mixture as before?

The opening words of the MS Society’s booklet remind readers about an important principle, and how the Society considers that it should act in accordance with this.

It is government policy to provide patient-centres services that will enable people with long-term neurological conditions to maintain their independence and wellbeing and lead as fulfilling lives as possible.

The MS Society fully endorsed this approach and a key aim for us is to involve people affected by MS in everything we do. One way we achieve this is by encouraging people affected by MS to get involved in the planning and development of their local services. Often the result is to bring about real improvements and lasting change.

The Conductive Education Project in the North West seems an ideal exemplar of this principle in action. It is also an excellent example of the wider promulgation of a Conductive Education project. So far there has been a newsletter item, a brief journal article, this booklet and its accompanying DVD.

But what happens next? Is anybody listening?


Notes


Neurosupport Centre
http://www.neurosupport.org.uk/

http://www.mssociety.org.uk/downloads/North_West_Voice_-_summer_
Be prepared to wait, this can be very slow to download

Independent Conductive Education Services
http://www.i-ce-s.com/

RACE will be on line from this summer

References
Anon. (2008) Conductive Education, North West Voice, Summer, pp. 4-5

Kelly, M (2007) Conductive Education and multiple sclerosis: putting a toe in the water, Recent Advances in Conductive Education, vol. 6, no 2, pp. 47-48

Multiple Sclerosis Society (2008) Conductive Education Project (booklet + DVD)

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