September, October and November 2001

Naked DNA
A technique called “naked DNA” vaccination could aid immune system diseases such as Multiple Sclerosis and Rheumatoid Arthritis. Both are conditions in which symptoms are caused by the body’s own immune system launching an attack on its own tissues in the same way it would attack a foreign object. Part of the unwanted response causes inflammation by producing natural chemicals called cytokines and chemokines and the approach of the new vaccine is to make these chemicals the target of the immune system by introducing engineered genes which appear like the culprit chemicals. While the injected genes do not themselves act like the cytokines and chemokines and cause damage to body tissues, they should provoke an immune response that should mop up the inflammatory chemicals and prevent any more damage.

The theory is that such a vaccine could be particularly valuable in conditions which are progressively more disabling and the idea is to teach the immune system how to correct its own mistakes. A report from Israel states the vaccines have been successfully tested on animals and the team is now examining ways of delivering the genes into humans before moving onto human trials. Although the use of genetic vaccination has inherent dangers, in that it may be difficult to reverse the effects if something goes wrong, any effective “vaccine” that prevents eventual disease progression would be a significant breakthrough.

Beta Interferon
Good News: A new study (published in Neurology, June 2001, vol. 56, pages 1628-1636) has shown that the benefits of beta interferon 1a (Rebif) continued for the full four years of an extended clinical trial. Pervious trials had stopped after only 2 years so it was not known if the benefits would go on for much longer. The study also emphasised that early treatment is important.

Alarming News: Although interested parties in a consultation process have officially until 7th September to submit their comments, a leaked report from N.I.C.E. (the National Institute for Clinical Excellence) suggests that it has provisionally decided not to widen the use of beta interferon on the National Health Service although patients in England and Wales already getting the drug will continue to receive it.

If this is correct, the decision would influence policy in Scotland where the Health Technology Board for Scotland evaluates N.I.C.E. recommendations.

In view of the above, if you would like to contact your local Member of Parliament for Scotland over this issue we have a list of names, addresses and contact numbers of regional MSP’s here at the Centre.

Why is MS More Likely in Women?
Autoimmune diseases are approximately twice as likely to occur in women, but we do not fully understand the reasons why this happens. The differences may be due to hormones, subtle differences in the immune systems between men and women or it may be that the Y chromosome provides some protective effect. Interestingly however, equal numbers of men and women have primary progressive MS thus giving a clue that this rarer form of MS might have a different cause.)

The National Multiple Sclerosis Society in America (NMSS) has set this research question as a priority area for funding. In partnership with national research funding agencies in the US, $20m is likely to be spent on this directed research programme over the next few years, of which the NMSS has set aside $4m. We will keep you abreast of the results of this research over the coming years.

Fatigue
Last quarter we asked someone with a special interest in fatigue in MS to visit the Centre. Here are the views to two people who attended the session.

On June 13th Carole Shaw, an expert on fatigue and relaxation techniques gave a talk at the centre. Fatigue is a symptom which is common to 85% of people with MS.

Firstly she asked the people present for some first hand experiences of how they got fatigued. The feedback was endless, indicating that fatigue is a major problem for people with MS . It is an invisible symptom which may not be obvious to others. We discussed how listening to your body’s needs and putting some time aside to relax is crucial. It is easy to overdo things and you usually pay or it later, so you have to learn to listen to your body and say “no” to people sometimes.

The discussion was encouraging due to the fact that most people there had the same problems and we discovered new solutions.

Latterly we were talked through a relaxation exercise with some taped background music and gradually tension was released from every part of the body. We were shown how to “switch off” and feel the benefits.

Carole gave us encouragement and confidence that we could keep our fatigue levels under control with better time management, forward planning and complete relaxation. Brenda

I have had MS for over 20 years and have attended the Resource Centre for 9 years. I went to all the talks going when I first joined so when the talk on fatigue and relaxation in June came up I was not really keen to attend but I made the effort to go along and was glad I did. The talk was very interesting and the relaxation did work and I am now sleeping better as I am more relaxed.

It does good to listen to other people who have the same or similar problems and you always learn something to your advantage from these talks. Marie

The Stuart Resource Centre runs relaxation sessions on a Thursday and Friday morning. If you would like to attend a session to “give it a try” you would be very welcome. Just call first to let us know to expect you. We can even arrange for transport, within the Aberdeen area, to take some of the “fatigue” out of travelling.

Memory
Dr. Fiona Summers, a Neuropsyhchologist at ARI gave a most interesting and informative talk on memory at the Centre. Below is a brief summary of her talk.

Dr. Summers talked in depth of Cognitive Functioning which refers to activities such as thinking, reasoning, memory planning and organising, attention, problem solving and perception. Those who attended the talk were then divided into small groups to list their own thoughts on those activities. Research has shown than between half to two thirds of people with MS seem to show cognitive impairments to some degree – memory and learning being top of the list.

Dr. Summers suggested using memory aids such as a diary, notebooks, making lists, well charts, etc. to aid memory.

Horizons Rehabilitation Centre offers a limited service where O.T.’s and neuropsychologists assess levels of impairment for those with cognitive difficulties.

“Coping with memory problems” is an excellent practical guide for people with memory impairments, their relatives, friends and carers and is available on loan from the Centre.

Care Homes
On 13th June, Scottish Care, the association of private nursing home owners, barred local authority admissions to its homes in Aberdeen and threatened the action would spread across the country if their demands were not met. Scottish Care claimed that they required an extra £50 per week to provide nursing care to individual patients – at a cost in Aberdeen alone of an extra £1 million pounds. An offer from the Scottish Executive of an extra £17.5 million pounds (or £10 per person per week) to be distributed throughout Scottish Care homes was rejected in July as “insulting”.

In mid August a compromise was worked out. The care association would accept the offer providing an independent working group was set up and reported back in three months on the true cost of caring

The deadlock in Aberdeen had created numerous cases of “bed blocking” whereby hospital patients who had been due to be transferred to residential care could not be discharged because of lack of places. This scenario could occur again nationwide in three months time if an agreement is not reached.

Tell Them What You Think!
Grampian University Hospitals NHS Trust is inviting comments about facilities for disabled people in:-

Aberdeen Royal Infirmary
Aberdeen Maternity Hospital
Royal Aberdeen Children’s Hospital
Roxburghe House & Tor-na-dee
Wolmanhill
Dr. Gray’s Hospital, Elgin
Raeden Centre, Aberdeen.
They are reviewing the facilities and services they provide for people with disabilities and to do this effectively they need YOUR input. If you have any comments about their services please contact: Lynne Thomson, Quality Development Dept., Room 2, Ashgrove House, Ashgrove Road West, Foresterhill, Aberdeen AB25 2ZA Tel. 01224 554149, Fax. 01224 550727 or

e-mail: quality.development@arh.grampian.scot.nhs.uk

D.I.G This
The Disablement Income Group is a national charity which has been operating in the Grampian area since 1973 and is financed through subscriptions, donations and fundraising.

It’s client groups are people with learning or physical disabilities. DIG works to ensure that nobody suffers financial hardship as a result of disability and does this through personal advisory services, helpful publications, informing politicians and pioneering research. They offer advice and help for disabled people in obtaining their rights. This service is provided through Scottish headquarters in Edinburgh Tel. 0130 555 2811.

The Aberdeen Charitable Trust have two Ford Fiesta “Couriers” specially adapted for a wheelchair passenger which can be hired for outings or holidays. The driver must be aged between 25 and 75 and have a clean driving licence. Charges are £7 per day if the vehicle is returned with a full tank of diesel or, for shorter periods, £2 plus 20p per mile with a maximum charge of £15 if no fuel is added. For booking or more details telephone John Guest on 01224 587212

Members of the public can make contact direct and membership cost per annum is £5.00. For further information contact the DIG Secretary, Mrs. Nancy Grant on 01224 740884

Training for Carers
Are you caring for or looking after an older person? Or are you an older person looking after a spouse, friend or relative? Thanks to a small grant from Age Concern the Carers Centre hopes to run a number of classes for informal, unpaid carers. Topics would include:- What is Dementia?, Looking After your Back, Advocacy – learning to speak up for yourself, Stroke – an introduction, Basic First Aid and Coping with Stress and Guilt.

These classes will be free to carers so if you are interested in taking part in any of the above classes please phone Lesley on 01224-646677, Places will be on a “first come first served” Basis.

More Help Required
We have been asked for help in finding a group of carers and the people they care for to assist with some research into Respite/Short Breaks. We know that lately we seem to have been constantly asking for feedback and input and that it can be time consuming and may sometimes feel intrusive but if you can help please do. Without research such as outlined below it is well nigh impossible to get funding from either the government or the lottery etc. for the many very useful projects that are carried out.

Shared Care (Scotland) and Robert Gordon University have obtained a grant to investigate respite care. The main aims of the project are to :-

investigate the main role of respite care for a range of different people/carers
determine if appropriate measures exist for evaluating respite care
establish the extent to which it is possible to measure the cost effectiveness of respite care
The research team would like if possible to hold separate interviews with carer and the person being cared for to make it easier to listen to both views. Interviews could a held in your own home or somewhere else if you prefer.

If you are interested in helping and would like more information please call either Sarah or Catherine at Robert Gordon University 01224 263044 or e-mail sarah.campbell@rgu.ac.uk or c.murdoch@rgu.ac.uk

What? Snoezelen?
What is Snoezelen? It’s a new therapy offered at the Stuart Resource Centre which was first developed in the Netherlands twenty years ago! Studies from around the world have shown highly positive outcomes of the benefits of Snoezelen in certain client groups.

Research has shown Snoezelen to improve levels of tension, depression and anxiety and research into Snoezelen use in the relief of acute and chronic pain also show promising results. It’s non invasive, very safe and quite an experience – so why not give it a try?

To arrange a Snoezelen session for yourself, just call the staff at the SRC. Tel. 692777

A-Z of Complementary Therapies
This book published by the Multiple Sclerosis Resource Centre and written by Judy Graham with Frances Pulling details all the main complementary therapies used for MS. These include such therapies as acupuncture, herbal medicine, homeoopathy, aromatherapy, flower remedies, massage, counselling, hypnotherapy, meditation, shiatsu and many, many others.

Complementary therapies can help people with MS. Sometimes the improvement is dramatic, sometimes less so. But in virtually all cases, people report feeling better. This book contains many actual individual’s accounts of treatments and responses to various therapies – some with quite remarkable results.

One therapy which is both interesting and easily tried, is the idea of “bed raising” which is used in hospitals for heart patients. Basically you need six three inch high bricks. put two each under either side of the top of the bed, one each under either side in the middle and leave the bottom resting on the floor. Exponents of this therapy suggest you put a thick duvet under your bottom sheet to stop you sliding down the bed and report improvements in bladder function, a lowering in blood pressure, improved circulation and improvement in muscle spasms. It certainly sounds worth a try.

The Stuart Resource Centre now has a copy of this book for reference only. If you’d like to come in and have a look at it please drop in any time or if you’ve some questions on any specific therapy give us a call on 692777.

New Pathways
The Multiple Sclerosis Resource Centre in Essex has, for a number of years, produced a bi-monthly newsletter containing items of interest to people with MS.

New Pathways is a glossy, well produced, professional, easy to read magazine that has taken over from the original Pathways and is chock full of interesting and topical news concerning MS and people with MS. New Pathways ask for a minimum donation of £10 per annum in order that your own copy can be delivered to your home or workplace in a plain cover 6 times a year but, they state, that where even £10 might be too much they might be able to provide the magazine free.

Contact them at:- The MSRC, 7 Peartree Business Centre, Peartree Road, Stanway, Colchester, Essex CO3 5JN. Tel. 01206 505444. e-mail: themsrc@yahoo.com

If you would like to “try before you buy” copies of New Pathways can be read here at the SRC.

Cinema Buffs
Have you heard about the new UGC pass which gives you unlimited cinema viewing for £9.99 a month? UGC is completely “disabled friendly” e.g. toilets and spaces in every cinema for wheelchairs. Also the seats are very comfortable. UGC used to be Virgin Cinemas down at the beach and there are plenty of eating places round about as well. If you’re a cinema fan it works out really reasonable as the more often you go the cheaper it is. I go once a week although I could go more often if I wished.

Insurance Problems
A number of people seem to be having difficulties with their insurance companies over “critical illness” cover. It appears that insurance companies are effectively nullifying cover if there has been any hint of non-disclosure of all facts. A recent case that went to the Ombudsman involved a person with MS, diagnosed in 1996 who had not disclosed she had seen her doctor about an eye problem in 1990 and a tingling sensation in 1993. He found in favour of the insurance company.

If you’d like information of MS friendly insurance cover contact the Centre.