MS Research comes to Aberdeen
‘I would like to take this opportunity to introduce myself now that I have taken up my position as the head of a new Scottish research unit to work on the causes and treatment of multiple sclerosis.
As I am sure you are all aware, for reasons which are still unclear, Grampian has the highest incidence of MS in the UK. It is therefore a great challenge to join the University Hospitals initiative to establish a centre of excellence for research on MS here in Aberdeen.
My background is that I am a basic scientist who has been involved in MS research for over twenty years, mostly in Germany at the Max-Planck Institute for Neurobiology. Our current ideas as to why certain people develop MS are still rudimentary. We know that genes play a role as do environmental influences (infections, diet etc), but we still cannot say what combination of genes and external events may trigger MS in any particular individual, let alone predicting who is going to get the disease, or once started, making any prognosis as to how it will develop.
However, there is now substantial evidence that MS is at least in part an autoimmune disease. Moreover, we now know a lot more about the inflammatory process that causes the damage in the nervous system, knowledge that we are already using to improve on current treatments such as interferon.
My aim in Aberdeen is to work together with my clinical colleagues to investigate those genes and environmental factors that contribute to the high incidence of MS in the North East of Scotland. One thing that I have learned over the years is that research into MS cannot be performed as a one-man show. We need to generate a research environment that encompasses patients and their families, as well as clinical and basic research scientists, a goal that I know we can achieve here in Aberdeen.’
Professor Linington will give a talk here at the Stuart Resource Centre on
Tuesday 1 July at 7 p.m.
All people interested in his research are cordially invited to attend. Please contact the SRC by Friday 27th June if you are likely to attend so that we can arrange for seating etc.
A recent study into the treatment of trigeminal neuralgia (pain in the face), associated with multiple sclerosis suggests that the drug Misoprostol could be safe and effective in treating this symptom of MS.
Of eighteen patients who completed the study fourteen of them showed a reduction of more than 50% in attack frequency and intensity beginning five days after treatment onset. This often difficult to treat symptom responded well to the treatment and there were only mild and transient drug related side effects in three patients.
More than 800 people have already signed up to the MS Society’s free e-mail alert service. It allows subscribers access to new information as soon as it is available. You simply select your own areas of interest from a list of featured topics – ranging from medical research news to fundraising events – indicate how often you would like to receive the updates and enjoy up-to-the-minute information.
Click on to www.mssocietyalerts.org.uk to find out more.
www.mssociety.org.uk now also hosts regular on-line chat sessions with leading MS clinicians and researchers and other health professionals – definitely worth a look.
Wide Dissatisfaction with Healthcare for people with M.S.
A MORI survey reveals that nearly half (45%) the people diagnosed with multiple sclerosis in the last three years who took part in a survey are dissatisfied with the support they received from the NHS at the time. The poll among members of the Multiple Sclerosis Society also found one in three members overall (32%) is unhappy with their healthcare generally. Fewer than a quarter can always access MS services on the NHS when they need them.
Findings of the MORI Social Research Institute survey for the society were released at the start of MS Week in the Society’s 50th anniversary year. More than 3,000 people were polled on their experiences of MS healthcare.
Six out of 10 of those diagnosed in the last three years said they had not been able to see a specialist MS nurse or support worker in the month after diagnosis. Seven out of 10 in that group had not been put in touch with a specialist MS clinic or team.
Eight out of 10 of those surveyed said their NHS care should be better co-ordinated. A similar proportion wanted someone with knowledge of MS to manage it.
Six out of 10 rate the NHS as poor in providing information about different aspects of their condition. Nine out of 10 have found out by themselves most of what they know about it. Fewer than one in 10 has been asked their opinion to help develop services.
Most believe their quality of care depends on where they live and they will get a better service if they know what they need and how to ask for it. They say the NHS fails to provide enough emotional support for people with MS.
The survey does reveal some improvements since a poll conducted by the Society in1999. The proportion of people who said they were able to meet a specialist nurse in the month following diagnosis has risen from 8% to 29%. The number referred to a specialist MS clinic or team has risen from 10% to 15%. Thirty-nine percent have a named professional responsible for coordinating their care against 24% four years ago.
By contrast, fewer people (80% against 86%) are being informed about the range of MS services their local health service can offer.
Copies of the survey are available from the Information Team at the MS National Centre. Tel no. 020 8438 0799
Reaching for the Sky
It may seem that we have our heads in the clouds but our latest ambition is to raise a mile of copper. It’s amazing how these little one and two p’s mount up.
Twenty pence, i.e. 10 x 2p’s make 2 centimetres. Twenty four pence, i.e. 12 x 2p’s make an inch.
Twelve pence, i.e. 12 x 1p’s make 2 centimetres.
Fifteen pence, i.e. 15 x 1p’s make an inch.
Since there are 1760 yards in a mile and 36 inches in a yard we estimate that if we were to raise a mile of 2 p’s we’d raise – well anyway, a large amount of money…You work it out, but we guesstimate £15,206.40p – (Of course we could be wrong by a decimal point or two.) If we were to raise a mile of 1p’s we’d raise almost £10.000.
A quick survey of the staff’s pockets raised three x 2p’s , eight x 1p’s and a couple of moths so we’ve already begun the journey – and we didn’t miss the fourteen pence – much.
So please help us reach our objective. At the end of each week or month turn out your pockets and put the copper into a bag or tube and take it to us. Every millimetre will go to the local Aberdeen Branch which funds, among many other things, the Stuart Resource Centre and every penny would be put to good use for local people. We’ll let you know how many feet we’ve travelled every three months in “Update”.
It may take us a while but “Per ardua ad astra” as the R.A.F. motto says – “By striving the stars”. With your help we can do it!
Extra Time for Millenium Awards
Originally due to finish in April this year, the MS Society Millenium Awards programme for community projects has been given an extension until November 2003. All projects need to be completed by March 2004.
One recent project has been:- Six people receiving tuition in playing the electric bagpipes.The limits are your own imagination.
For further information and to apply please contact John or Lesley on 020 8438 0813/0905 or e-mail:email@example.com
New Leaflets at the Centre
MS Essentials:- Managing Relapses, Memory and Thinking, Insurance and Tremor. Get your copies from the Information Room or call 692777 and we’ll post them on.
One of the last “one offs” here at the Centre was a presentation given by members of Grampian Police Force on how to keep your self and your possessions safe. Despite the newspaper reports Grampian is one of the safest areas in Britain but nevertheless it pays to be careful and aware. Below are some hints and tips on crime reduction and personal safety.
Always be aware of your surroundings.
Trust your intuition – you are probably right.
Walk with purpose and confidence – it works.
Avoid risk – use busy well-lit streets.
Walk towards oncoming traffic – this will prevent you getting stuck behind car doors.
If you think you are being followed cross the road and go to a house, pub or shop and explain your concerns if necessary.
Carry a personal alarm in your hand and not your bag where you can’t access it quickly.
When returning home have your keys ready in your hand not in your bag. Same goes for approaching your car.
Carry your handbag across your body to avoid snatches. A shoulder bag is best and carry as little cash as possible
Be aware of who is around you if you have to use a cash machine.
Have an outside light on at your home. A passive infra red light that lights up when you approach works well.
Fight or Flight?
If in spite of these precautions you are accosted you will have to make your own choice. The law says you can defend yourself but you might be charged with assault if you use excessive force. Where possible run fast, far and to safety. If unable to run you could shout or scream. Unfortunately if you shout “Help” people may think it’s just kids larking around. “Fire” attracts peoples’ attention. But if you are threatened, especially with a knife or a needle, it is probably best to hand over your property quietly and get a good description of the assailant.
In the Car
Have your car regularly serviced and fuelled.
Join the AA or a similar break down service.
Keep to busy roads if possible.
Carry a mobile phone (charged and in credit)and have change for a public telephone.
Do not pick up hitch hikers – most especially if you are on your own.
If you break down phone for help or use a “Help, call Police” sign. Stay in the passenger seat with locked doors until help arrives.
Choose well lit parking area if possible.
Remove all valuables from sight (this includes radios etc. if possible)
Set steering lock. Set alarm or immobiliser.
Close all windows and lock all doors.
Close curtains after dark.
Lock back and front doors and internal door to garage.
Have a spyhole and chain fitted and use them.
Do not show your first initial on nameplates.
Ask always to see callers Identity Card – even those of uniformed callers – most services can operate a pass code system if you arrange it. Never sell to (and be very careful of buying from) people who just “arrive” at your doorstep.
Never employ “bogus workmen” – order from a reputable firm after getting three quotes.
Do not give cash advances.
Never leave people alone at your open door – they may steal your purse, handbag etc.
Get help from a neighbour/friend if need be.
If in doubt keep them out.
Have good door and window locks fitted and use them even upstairs. (Wheelie bins can be used to assist entry at a higher level.)
Don’t keep back door keys in locks or keys on a string inside the letter box or under flower pots.
Put your lighting on time switches and tune your radio to a talk station and put on a timer switch.
Mark your property with name and post code with “invisible” marker pens – these can be obtained from the police (or the SRC have some).Photograph any valuables and jewellery – it will be much easier to track down if something does happen.
Don’t keep important things in biscuit tins – many addicts need quick sugar “fixes”.
Try not to keep large sums of cash at home, thieves know all the “usual” hiding places and your money is really much safer in a bank or post office account.
Check into getting an alarm system. Some can be hooked up to the police station.
Ask a reliable neighbour to keep an eye on things while you are away.
Cancel newspaper deliveries if going away.
Join your local Neighbourhood Watch. If your neighbourhood doesn’t have one contact the police about how to start one up.
For further advice on Personal Safety Tel. 01224 386875
If you are worried about a “bogus” caller. Tel. 01224 386000
Or in an emergency Tel.999
Aberdeen Care and Repair
Aberdeen Care & Repair is a free Advisory service for older people, people with a disability or long term health problems who are either homeowners or tenants in the private rented sector. We offer a home visiting service to advise and discuss any necessary repairs to your home and, where appropriate, offer assistance to obtain quotations from reputable contractors and to inspect the works once on site.
There are three aspects to the service:
Repairs, improvements or disabled adaptations – advice and assistance given in applying for any available grants from the Local Authority, and in sourcing other available means of funding.
Affordable Warmth Scheme – advice and assistance with the installation of new central heating system or upgrade of the existing system. Funding for these is sourced and a low interest loan scheme may be available.
Small repairs service – available to arrange minor repairs or tasks around the home. For this service the client is only charged material costs whilst the Project pays the labour costs (up to a maximum of £75).
The project takes a holistic approach on clients needs and can carry out a benefit check and assist clients with the completion of appropriate benefit claims. They can also refer clients on to other appropriate services
Referrals can be made direct to the project from the client, client’s family or from any statutory or voluntary agencies.
For further information contact:
Aberdeen Care & Repair, 4 Carden Place,Aberdeen AB10 1UT
Tel: (01224) 628109 / 628108 / 628106
Need a Wheelchair?
The Wheelchair and Seating Service is part of the Mobility and Rehabilitation Service (MARS) and supplies, through the National Health Service, seating to people of all ages who have a permanent disability affecting their mobility . The service covers Grampian, Orkney and Shetland and is staffed by a multidisclipinary clinical team, administrators, engineers and technicians.
Referrals are through your GP and around 2000 referrals are made each year. Some decisions are made solely on the information provided on the referral form but for others a clinical assessment is required, usually at MARS base at Woodend Hospital in Aberdeen. At an assessment you will be asked about the circumstances in which you might use a chair. This could cover home and work situations. How you sit will be monitored and you may also be asked about personal issues such as toilet use and have your spine, limbs and skin examined.
People with the most urgent need are given priority. Although your views are taken into consideration as to what type of chair is supplied the final decision is based upon clinical need, available resources and national eligibility.
If you already have a wheelchair through MARS and it needs a repair just telephone 01224 556840. If you have a chair that you feel needs to be modified because your situation has changed just ask your Occupational Therapist or Community Nurse to contact them.
Remember although you can buy a chair privately you really do need to get one that is measured and designed by experts to meet your personal needs. A badly fitting chair can do more harm than good
Get Out and About this Summer
Voluntary Service Aberdeen’s Special Transport Scheme was designed to provide afternoon outings for older housebound people. The Scheme has been running since 1967 and, in that time has provided many thousands of trips for people who are unable to get out on their own or are unable to use other forms of transport.
Outings commence in April each year and continue on a daily basis through September. The route and destination of each trip are decided by the driver/escort team, taking the weather and time of year into consideration. Trips take place within a 25 mile radius of Aberdeen with a mid-afternoon stop for refreshments, paid for by VSA. Passengers are usually back in their own homes by 5 p.m.Drivers, escorts & organisers are all volunteers.
For more information contact:- The Duty Volunteer Co-ordinator, Aberdeen Volunteer Centre on Tel. 01224 212021 Ext.204