August 2002 Newsletter

A Job Well Done

I’m sure you will all join with me in thanking Ian for his excellent contribution he has made in producing our newsletter for the last three years. Following the birth of his son (good news or what!) he felt it would be difficult to find the time available to continue. However, I’m so grateful he will still be able to help me out on some of the “tricks of the trade”.

Let us also acknowledge the support and encouragement of the Prudential Assurance Co who have assisted us throughout. But this is a new dawn for the newsletter and as they say…..let’s go for it.

We want to hear from you

If you have come across any relevant articles or would like to share your experiences (whatever) let me or your coordinator know.

AGM & Conference

Has another year gone by so fast? They say that’s a sign of getting... Never the less we are happy this year’s day together is nicely taking shape.

When is it?

Saturday 14th September. Coffee and registration prior to 11.00 start.

Where is it?

The Snibston Discovery Park, Coalville, Leicester, very near junction 22 of the M1. Rest assured we are not in Sheepy Magna Wheelwright’s Workshop but have booked the conference suit.


You may wish to consider Premier Lodge, Leicester West, tel: 0870 700 1416. I am told there are a number of disabled rooms available clearly on a first come first served basis. We are assured there is more than adequate parking. The cost is £46.95 per room plus breakfast £6.25 (traditional £4.25 (continental). Travelling time to Coalville by car is about 15 minutes.

On the day

This is primarily for us. Hopefully you will leave having learnt more about FSP and also made some friends.

Gita Ramdharry (those attending our Milton Keynes conference last year will remember) will again talk us through the physiotherapy section. Various other speakers such as REMAP (innovative one off design projects for the less able) and The Disabled Drivers Association have very kindly agreed to speak. The Doctors view and more particularly the genetic research aspects with FSP are to be presented by Dr Christopher McDermott. In open forum times we would like to share with you the aims of the group and to pick up on how best we can help in the coming year.

Physiotherapy Research in FSP

Physiotherapists use a variety of methods in order to measure a client’s response to treatment and to establish their initial status. These methods or tools are termed outcome measures. Before an outcome measure is used by physiotherapists it must be proved that it is reliable and valid, i.e. that it is accurate, measures what it is meant to measure and if the same measurement were repeated the same results would occur.

As student physiotherapists with an interest in FSP, it was decided that as a final year’s research project an investigation would be conducted, assessing the reliability and validity of a test that measures balance. This will help establish whether this outcome measure could be used by physiotherapists to measure the balance of a client with FSP. As with most research, volunteers are required for this study. Therefore, we have accepted your kind invitation to outline our study and its needs, at the next FSP society meeting at Leicester in September. This will give us the opportunity to meet you and answer any queries or questions that you may have. It is intended that a leaflet will be available at this meeting for individuals who are interested, especially those willing to assist us with research.

Although this is only a small study, all journeys start with the first step, therefore we hope to stimulate further physiotherapy interest in FSP and provide useful data for related future research.

Authors & Researchers: Andrew Deeming, Marcus Matkovits, Camilla McQuade and Andrew Walker. BSc Hons physiotherapy students at East London University.

Supervised by: Fiona J Coutts MSc MCSP principle lecturer at East London University.

Sitting in Circle

No, we’re not trying to connect with those who have moved on. The above statement simply picks up on a point mentioned in several letters following Jane and Michael Bennett’s social gathering in Godalming around the end of April. Some 30 of us enjoyed a good natter (and food) and once the seating had formed a miraculous circle, issues dear to us all were covered in an open forum basis. Virtually everyone; especially the new members, made a meaningful and positive contribution resulting in a most exhilarating experience. I do believe the moving forward together concept was there for all of us to see. I quote;”Throughout these exchanges I found people so friendly and that convinced me the FSP Support Group was the right thing for me”. Thank you all for your part in this special occasion. Jane will be sending out invites for the November meeting later. Our kind thanks for the nice comments on the professional manner in which the meeting was run.