Wessex MS Therapy - Newsletter

	NEWSLETTER WINTER 2006
	NEW CENTRE MANAGER Last year I returned to the UK from New Zealand, where I had been living and working for 13 years as a Doctor. The last eight years or so I spent working as a GP, firstly on Great Barrier Island, a small island off the north east coast of Auckland in the North Island and latterly in Nelson in the top of the South Island. I was diagnosed with MS in 2004. Last year my partner and I planned to return to the UK for a six month trip, but unfortunately 2-3 weeks after arriving I had quite a severe relapse which left me with residual numbness over both of my hands. It was at this point that I decided that I could no longer practice safely as a GP and that taking all things into consideration I would be better off staying in the UK. I became a member of the Wessex MS Therapy Centre in August 2005, taking advantage of the HDOT, physiotherapy and counselling facilities that were on offer. I spent an awful lot of the last year trying desperately to work out what I could now do for work, and in July I decided to apply for the post of manager of the centre. In August I was delighted to be appointed. I am enjoying working with the extremely helpful, committed and supportive staff at the centre and gradually getting to know the full membership better.
	STOP PRESS Professor Neil Scolding, MS Specialist from Frenchay Hospital and one of our patrons, whose current research is in the area of Stem Cells will be coming to talk to us at the centre on Thursday February 15th at 3 o'clock. This will be an interesting and informative afternoon, which we are very lucky to be able to offer. All are welcome.
	CHRISTMAS EVE Snowflakes are quietly drifting on their way down to earth, It's Christmas Eve again and we think of the Holy birth. The children are sound asleep, their stockings have been hung, And thro' the 'Silent Night', I hear the carols being sung. The presents are all done in brightly coloured wrappings, I listen at the window, can I hear an angel tapping? I put another log upon the cheery fire, And now I sit and watch the flames as they leap higher. The tinsel on the tree, it glistens in the light, I draw the curtains back and see a heavenly sight. That star it shines so brightly. so far above the earth, The true meaning of Christmas, it is the virgin birth. Elaine Russ
	DISTRIBUTION Our newsletter is circulated to Wessex MS supporters, to Doctors’ surgeries and other outlets where we have a link BUT in order to save on postage, Members are asked to pick up their copies when they visit the Centre.
	HDOT OVER CHRISTMAS We are hoping to have the centre open for the day of the 28th December, purely for HDOT and are currently waiting to see if we have enough volunteers to run the sessions. Otherwise we’ll be closing on December 22nd and reopening on January 2nd 2007
	MISDIAGNOSIS OF MS In 1983, rheumatologist Dr. Graham Hughes reported he had identified a syndrome that could easily be mistaken for MS. It is now called the Hughes syndrome. Dr. Hughes warns that today hundreds of people may still be wrongly diagnosed because simple tests are not offered as a matter of routine. He estimates that 5 per cent of MS sufferers may be misdiagnosed. Few GP’s are alert to the condition and lack of knowledge causes thousands of people to suffer needlessly, not only by thinking they have MS but, in the case of female sufferers, by having unnecessary miscarriages. He recommends that two simple blood tests be routinely offered to any MS patient who has suffered recurrent headaches, problems with clots such as DVT, a family history of auto-immune diseases or who has had recurrent miscarriage. Once the syndrome is diagnosed, aspirin, or anticoagulants such as Heparin and Warfarin, produce a dramatic reduction in symptoms in 80 per cent of patients. Dr. Alasdair Coles of Cambridge University, praised Prof. Hughes’s work, but said:’ With modern techniques and careful inquiry, the number of people incorrectly diagnosed with MS is low’. The Department of Health was ‘not aware of any evidence that population screening would be beneficial’. Hazel Edwards, was diagnosed wit MS five years ago and ended up paralysed from the neck down. She is now able to walk again, having been correctly diagnosed by Prof. Hughes. (DailyTelegraph 31/07/06) Incorrect diagnosis of MS may be low but even one person makes it worth while to offer the simple blood tests. Editor.
	ME AND MY MUSMATE No, it isn’t a small furry animal! It’s a walking aid. My Musmate consists of a diagonal shoulder strap which is connected to a shoe harness by a very strong, adjustable elasticated rope. It arrived in bits in a cardboard box and putting it together reminded me of the problems of assembling IKEA furniture, but I did it in the end. I only tried it briefly indoors because the shoe harness proved to be too wide for me and has had to be returned for replacement. If you order one, I suggest you reduce the measurement of the width of the sole of your shoe by one centimetre to get a better fit. Even though the shoe harness kept slipping I still noticed a remarkable improvement in my walking and in my confidence. The National Clinical FES Centre at Odstock Hospital strongly recommend its use, with or without the FES. As for me, I’m really looking forward to being able to take my little dog for a walk for the first time in her four years of life. The Musmate single leg version costs £75 and that for both legs £125. They can be ordered via the Centre, which gets some financial benefit from the order Wendy Tindall-Shepherd
	.........AND MY MUSMATE I used to find walking very difficult. In fact, walking from the car park into the MS Centre was about the furthest distance I would tackle. Lifting my right foot and leg was ‘challenging’ and I’m sure I don’t need to describe the sense of heaviness we sufferers feel in our legs and how, at times, it can be incredibly fatiguing to move them, so when I read about the Musmate in Pathways (Issue 38), an aid which seemed to alleviate that effort, I felt it needed investigating. I rang Ken Armitage, the inventor of this dropped foot device and he and his wife Anne, who has MS, kindly offered to visit the Warminster MS Centre on 19 September to demonstrate its effectiveness. Quite honestly, since that date, I have worn the Musmate out of doors every day and have found that it has enabled me not only be more independent, but has helped me believe that I can get stronger again. Which I am. By using this simple design, my leg muscles, which had become weakened from little use, are now slowly getting stronger the more I use them and I am able to walk further than I have for a few years (still with a strong arm at the although I do fly solo with a stick occasionally). What surprised me after a couple of days use was that after a walk, my body didn’t ache from the sheer effort of moving and that getting about was so much easier. I used to feel uncomfortable with daily back pain which resulted from my weaker right leg but now, not only is my back less troublesome, I can manage ‘a walk’ more than once a day. I actually look forward to going out instead of the former dread of ‘can I make it?’ It feels as close to walking ‘normally’ as I can remember and I am now enjoying my regular outings to the Bath Botanical Gardens, something I hadn’t done for a year or two. My family tell me that I have that ‘spark’ back again, so using the Musmate has helped all round. On occasions I even use it in conjunction with the Functional Electrical Stimulator from Odstock, which stimulates my hamstrings and glutes but in most cases I clip the hook of the Musmate in to my shoe lace, pop the strap over my shoulder and I’m off! No wires or othotics to bother with – it’s that simple. I would encourage anyone reading this who has dropped foot problems to speak with one of the physiotherapists at the Centre to try out the Musmate – either for single or both legs. It’s worth a go and you may be very pleasantly surprised at the result. Teresa Nicholas
	IMBER WALK Once again the weather was kind and it did not rain until most walkers were safely inside the Centre. The result so far is £4,796.00 Chairman Elaine Russ praised all the helpers and volunteers on the day who ran the event and produced a wonderful barbecue for all. ‘The result is not as good as 2005’, said Elaine ‘possibly because not as many people as before came forward as Walkers or Pushers and individual sponsorship was down. The Imber Walk is a major fund-raising event for Wessex MS and the decrease in money raised might have a knock on effect on what we can offer to our members. As always it is important that everyone contributes in whatever way they can rather than leave it to the usual gang.’ It is appropriate here to say a big Thank you to Peter and Jean Gray and their family for all the hard work they put in doing the barbecue and also all the salads – not just for this year but since we started offering hot food to those taking part. 2006 was their last year so we will be looking for someone else to be in charge of the barbecue next year. It isn’t too early to put your name down!
	MECHANICALLY TERMINATED! I have just been mechanically terminated – or rather the contract on the Motability car from hell has just met its long overdue end. Readers will perhaps remember from the Summer issue of the Newsletter the problems I had been having with my Renault Scenic – five major breakdowns in six months. That was only the beginning! At the end of June, once again en route to a meeting at which I was to be the guest speaker, the car came to a halt, flashing messages to STOP IMMEDIATELY. As I was at the bottom of Zig Zag Hill and blocking the traffic I had to limp to the nearest garage, with the dashboard informing me that my oil pressure was dangerously low. Emerging from the garage kiosk where I had repaired to purchase engine oil, I was pursued by the garage attendant shouting at me to get that ……… car away from those pumps immediately. A glance at the car revealed a large pool of oil underneath it and an equally large amount of lubricant sprayed all over the vehicle, its wheels and its hot engine, whence a haze of smoke was rising. The outcome was yet another engagement missed and another trip home with RAC Relay. Apparently, for no known reason, the oil pressure had risen so high that it blew all the seals on the engine. I realised that, for some reason, the Almighty was not yet ready to welcome me to my eternal abode. I then set to wondering how on earth I was going to get to Leicester two days later for a conference at which I would not be able to manage without my wheelchair. Those of us who have been around for a while will remember the horrors of Motability as it used to be. Cold, unhelpful and ever ready to apportion blame to the unfortunate driver. How different the organisation is now! A very helpful Motability adviser told me that on no account must I attempt to get to Leicester on the train with my wheelchair. They arranged a taxi to collect my wheelchair and ramps from the car at the garage and then take me all the way to Leicester and bring me home again, at no cost to me. No doubt some strong words were exchanged between Motability and Renault UK and after a carless week my vehicle was returned repaired, fully valeted and sporting four new tyres. So far so good. Two months later I was about to drive home from Milton Keynes on the M1 when, fortunately, a friend asked me to give him a lift to the railway station, a five mile detour. As we approached the station there was a noise like metal wheels traversing a cattle grid and the car came to a complete stop. When the RAC engineer opened the bonnet he said “Jeez, your engine’s fell out”. Indeed the metal bolt holding the engine in place had sheared, allowing the engine to drop some five inches, smashing through the drive shaft. What would have happened had I actually been on the M1 on what was in fact Bank Holiday Monday doesn’t bear thinking about. Once again I had to struggle to get into an RAC Relay cab – very difficult indeed when your legs don’t work – and travel 150 miles in considerable discomfort. At this point Motability decided that, quite apart from my feelings on the subject, they had lost confidence in the car and intended to terminate the contract. I was told to order a new car, six months early, but no allowance was made for the £2,000 worth of adaptations fitted to the vehicle which was now to be written off. I therefore had to find £7,100 to replace the car – oh well, what else are mortgages for? Renault UK were monumentally unhelpful, telling me that “Cars break down – that’s why they have warranties!”. After a lengthy battle I finally managed to extract £270 from Motability and the square root of zero from Renault UK towards the replacement of the adaptations. Motability were unable to supply me with a loan car with hand controls so I had to agree to drive the Renault with its new engine for a further two months – not a relaxing experience. Even then I was completely without transport for two weeks (my wheelchair had also broken down!). I had originally intended to buy the Renault Scenic at the end of the contract, hence the very expensive adaptations. Thank heaven the problems occurred before the car became mine. Think of me on Wednesday, 25th October when I take delivery of my new top of the range Honda CRV, complete with wheelchair hoist and infrared controls. I think I deserve it. Meanwhile, the friend who was with me when the engine fell out has written a very good article for Top Gear Magazine and Renault continue to claim that they make the safest cars on the road. I understand that the car from Hell has now gone to auction. You have been warned! Wendy Tindall-Shepherd
	FUND-RAISING Hi, my name is Jane Hindle and I joined the MS Therapy Centre in May. I was so impressed with the whole set up that I wanted to offer some support by joining the committee. For my sins I have been asked to help with fund raising. I had no idea that every time a new member walks through the door it costs the Centre money. The fund raising committee will organise various events throughout the year. A list will be displayed in the Centre and it will also appear in the Newsletter. We hope that you will be able to help at least one event from the list. WE NEED YOUR HELP NOW. Please do contact the Centre with any fund raising ideas or donations, ALL MUCH NEEDED AND VERY WELCOME. We look forward to hearing from you soon. Jane
	TRAVELLING TRENDS FASHION SHOW What a success! over 100 tickets sold! over £1000 taken! The evening at Salisbury Racecourse was a rip-roaring, fun-loving, bargain shopping night. Thanks to everyone who came. The models were fantastic Sue Crouch, Romy Wright, Daleen White, Michelle Johnson and Debbie Anne Douthwaite; all different shapes and sizes, all beautiful inside as well as out. We were filmed by www.visionnews.tv. Lynda Cope and I found this a very giggly experience but we still managed to sing the Centre’s praises. We were very grateful to Salisbury Racecourse for supplying the venue and laying on the bar staff, who were wonderful. Nest Watson was there selling her exquisite jewellery and donating 10% as always. Jo Fortheringham, representing the Bodyshop, donating a super collection of goodies for the raffle. Great to see how well the evening was supported by our wonderful staff and friends from the Centre. Thanks Simon Atkinson also for the super posters and tickets. The evening made a profit in excess of £850. Sara Langley
	INLAND REVENUE - STATUS INSPECTION As some of you may already know, we have been successful in forestalling a decision by the Inland Revenue that would have cost your Centre some £52,000 in tax owed for the past six years. Having subjected our manager to a year of inspections and intensive meetings, they came to an initial decision that we were in breach of Revenue and Customs rules and had incorrectly classified our therapists as “self - employed”, when they should have been treated as “employees”. As your Chairman at the time, I felt that this situation arose partly as a result of my not involving myself with these meetings at an earlier stage. Certainly, as I have elsewhere explained, the pressures on Anne Wawn were too much, particularly when the work involved with the Healthcare Commission was occurring at the same time. It became apparent, when I was formulating my reply to their judgement, that certain misapprehensions had arisen, which led to it, and that certain facts, which were not known to Anne, might well lead to their changing the judgement on appeal. I argued very strongly that the Therapists were in charge of their own activities: that they made their own appointments, that their work at Wessex MS was as part of their own business, that they made a gesture to us in not demanding the sort of remuneration they might easily command elsewhere in the private sector, that the facilities they used on our premises were enjoyed “in exchange” for that gesture, and that they could all call upon a substitute to work in their place if necessary. We do not offer them employment facilities like holidays, sick pay, and training (though something of particular relevance to MS-specific therapies may be partly financed). The fact that Wessex MS pays their invoices for work done, directly, is a reflection of the very significant subsidy paid to enable members to afford their regular therapies. We have to be aware that their judgement in our favour can change at any time if we change our Conditions of Working. This may have relevance if conditions are imposed by the Healthcare Commission, but MS National, our “umbrella” Body are satisfied, following high-level discussions, that therapies other than Oxygen Therapy, should not be included in Healthcare Commission considerations except in so far as advice is offered. All in all, this is very satisfactory. We can keep the back-payment of tax which would otherwise be owed, but we must continue to be aware of the very strict lines upon which these matters are judged, notwithstanding the “grey” character of how the distinctions may be drawn. Adrian Gilder
	POSSIBLE NEW DRUG THERAPY A new treatment could offer the chance of a normal life to victims of MS. By combining two existing drugs into a new therapy programme, scientists at the Walton Centre for Neurology in Liverpool were able to cut the likelihood of a relapse among patients with the aggressive form of MS by 90 per cent. The results of their five-year study, published in the August Journal of Neurology raise the possibility that sufferers who would have been mostly bedridden throughout their lives will now be able to work, travel and raise families, as normal. The new treatment involves a limited course of the cancer dug Mitoxandrone, which can only be administered in small does because of side effects similar to chemotherapy. This is followed by the disease-moderating drug Copaxone, already available on the NHS for MS patients. Dr Mike Boggild, the consultant neurologist who led the research, said the two drugs appeared to have a powerful combined effect. A full study of the treatment’s effects will be held at ten centres across Britain. (DailyTelegraph 22.07/06)
	GW PHARMACEUTICALS AND THE ONGOING CANNABIS STORY Should regulators just chill out about the cannabis-based drug for MS made by GW Pharmaceuticals? The company has faced many difficulties from watchdogs. GW’s main product, Sativex, is potentially a revolutionary medicine for people with MS. The under-the-tongue spray, made from cannabis grown in GW’s top-secret greenhouses in the south of England, uses the plant’s relaxing qualities to alleviate involuntary muscle spasms of MS patients, while not creating any of the hallucinogenic qualities of smoking a joint. Having been formed eight years ago, GW has disappointed investors by seemingly being on the brink of launching Sativex on the market, only to be thwarted by adverse regulatory rulings and disappointing results from some of its medical studies. Many of the hiccups with regulators were because Geoffrey Guy, GW’s executive chairman, speeded things along in the mid-1990’s, MS patients desperate for something to alleviate their condition were using cannabis, only to find themselves charged with possession of an illegal drug. The courts tended to let them off or hand out suspended sentences, but the Home Office recognised the situation was unsatisfactory and encouraged a plan put forward by GW to look at turning cannabis into a regulated medicine. Geoffrey Guy said ‘when I started this programme I did it under a social, legal, ethical imperative to work as quickly as possible. The transcripts of a House of Lords select committee in 2001 show it was lambasting the Department of Health for being so slow. The Department of Health was saying in late 2002 Sativex would be approved in 2004’. GW first submitted its dossier to regulators in the UK in 2003 as a treatment for both spasticity and neuropathic pain, which affects people’s nerves. To the company’s dismay, it was rejected, on the grounds that separate trials should be conducted for each problem, even though most MS patients suffer from both. Two subsequent trials followed in spasticity, the latest of which was published in March. The study showed good results but just fell short of the efficacy standard demanded by regulators. GW has also been doing trials of Sativex for neuropathic pain and is also conducting trials for cancer pain in the US. Sativex’s sales have started in Canada and there has been a small-scale distribution in Spain and the UK under a compassionate use scheme. There is still a big question mark as to when, or even if, Sativex will be available for general use.
	RECENT CONTRIBUTIONS TO CENTRE FUNDS Entries marked with * are fund-raising events. The remainder are donations Imber Walk: £4796.49 Royal Bank of Scotland £ 96 C. Cooke £ 80 Mike & Nest Watson £ 430 A & C Day £ 269 Ian Wood £ 145 Fashion Show £ 768.16 M Goddard £2581 Bath Rugby £1782.63 M.L. Golf Society £1324.22 Newtown Hatch Tuckingham W.I £ 250 Wylye Valley Flower Club £130 *C. Douglas & M. Mercer £219.79 Book club £ 20 Downside Abbey Trustees £ 488.30 Hillside Café £ 50 Stroke Club £ 5.75 Virgin Mobile £ 50 Avon and Somerset Constabulary £ 895.02 Brigadier Pughe £ 615 Bell on the Common P/H £ 60 M.S Society £ 16 Prince of Wales p/h £ 70 Musmate £ 41.25 Warminster Town Council £2000 Chippenham Town Council £100 Glastonbury District Council £100 Bradford/ Avon Town Council £100 Sherborne Town Council £200 Shepton Mallet Town Council £100 Crushed can recycling via Ian and Yvonne Wood £483.50 Plus a number of individual donations.
	HELP LINES For anyone who would like to have help when newly diagnosed, or for people who would just like a chat with someone who can understand how they feel, we have a list of members who can be contacted. Katherine Williams 01373 561898 Dean Mackay Morris 01380 729925 Elaine Russ 01749 344789 Suzanne Rooper 01749 812450 Adrian Gilder 01380 818902