December 2006 and January & February 2007

PROMISING RESULTS FOR FINGILOMOD

An experimental oral treatment for people with relapsing remitting MS has just finished a two year Phase II clinical study and reports are promising – a relapse rate reduction of more than 50%, compared to placebo, with 77% of people taking Fingolimod remaining relapse free over two years. In addition more than 80% of people were free from lesions showing active inflammation on MRI.

Overall the drug was well tolerated with reported side effects, usually mild, including upper respiratory tract infections, nausea, decrease in heart rate and increase in blood pressure.

A Phase III multi- centre study involving more than 3000 people with MS world wide is being planned. For more details on this study please refer to:
www.clinicaltrials.gov.ct/show/NCT00289978

NEW DRUG IMPROVES WALKING SPEED

Following a 14 week Phase III clinical trial positive results were also reported on the drug Fampridine-SR. 35% of people responded to the treatment, showing an average increase of 25% in their walking speed compared to those on placebo and another positive outcome was increased in leg strength. Feelings of being “less disabled” were also reported in those taking the drug.

LATEST ON STEM CELLS

Many people with MS were very excited about the possibility of having stem cell treatment – especially after all the newspaper reports of “miracle” responses. It wasn’t available for people in the United Kingdom but various clinics across the world, the nearest were in Holland and Ireland, were offering the treatment for a cost of approx. £12,000 – a sum that was “just about” affordable by increasing your mortgage, taking out a bank loan or getting family and friends involved in some serious fund raising. After all, it it worked, it would definitely be worth it!

When people first talked to us about the treatment we urged caution because we, and many other people, believed that although stem cell therapy might well be “a” if not “the” way forward, it needed much more rigorous investigation and research. That said, we know of a couple of local people who had undergone the treatment and asked them to keep us informed as to their progress and we kept an eye open for all the latest reports.

The results weren’t really very encouraging but that didn’t stop a lot of people putting their faith in the treatment. Their attitude was “some hope is better than nothing at all” And so it went until early October when news came through that clinics offering the treatment in Holland and Eire had been suspended and rumours that some directors of some companies offering the treatment were being investigated for fraud.

Stem cell treatment holds huge promises for many currently incurable illnesses but research is still in its early stages and a huge amount of work still has to be done before these hopes can be realised.

For a “reliable” up to date leaflet on the potential of stem cell therapy please contact the centre.

CARE IN THE COMMUNITY

Community Care is a way of providing care and services to vulnerable people. It means that these services are planned to provide help when and how you need it. The different services are co-ordinated by a Care Manager and reviewed regularly.

Community Care provides a service to:
– People with problems resulting from ageing.
– People with a physical or sensory disability.
– People with learning disabilities.
– People with drug or alcohol dependency.
– People caring for others.
The care team has a crisis intervention team that aims to respond to referrals and to arrange short-term care packages within 24 hours.
Referrals to the Team are made by an appropriate professional i.e. GPs, Nurses from hospitals and the community or Social Work staff.

Community meals:
Community Meals are provided by Neighbourhood Services for people who are elderly or disabled. Each meal consists of two courses, either soup and a main course or a main course and pudding. Special diets can be catered for e.g. diabetic, vegetarian, halal, kosher. Meals are delivered by Wiltshire Farm Foods every two weeks to the customer. The customer pays the delivery driver for the meals and places their next order. For more information about Wiltshire Farm Foods visit their website at www.wiltshirefarmfoods.com or contact SRC or health care professionals.

Referrals to the service can be made in person, by doctors, health visitors, district nurses, social workers, carers, relatives or friends. A social work or health care professional will then assess your needs. If you qualify and do not have a freezer to store their meals or a steam heater/microwave to cook them, these will be provided by the Council on loan and free of charge.

Have your say
You are entitled to a quality service. If you are unhappy or unsatisfied with the any of the care services that you receive please get in contact with the community or social work staff and they will help and assist you in making your complaint. If you feel reluctant to do this yourself (people on the receiving end of care often feel very vulnerable and don‘t want to “make a fuss“) ask someone “outside” to help e.g. the staff at the Stuart Resource Centre or an Advocacy Service.

BETTER SAFE THAN SORRY

Many people with MS live on their own and may have very little contact with the outside world. The reasons for this are as varied as the people who have MS but one thing everyone who lives on their own has in common is their vulnerability if “something should happen”. It’s not something most people like to think about but a little forethought and planning for a “what if” scenario could save a lot of potential problems. For example, What if I fell and broke my leg? Who would hear me? Who would notice that I hadn’t opened my curtains the next day? How long would it take for someone to investigate? If the answer to these and similar questions are not reassuring perhaps it’s time to reassess your situation.

If you have a mum/dad, sister/brother, son/ daughter or even just a good pal from school or work or a friendly neighbour perhaps you could arrange to ring them each morning and/or evening just to let them know you’re OK

Or enquire about signing up to the Community Alarm system or the Telecare system as described below.

Or look at moving to “sheltered” accommodation.

You may not want or need the sort of care that requires people coming in and out of your home each day but putting strategies in place “just in case” makes a lot of sense. If you’d like to talk over options with a member of staff at the Centre please give us a call.
BLUE/GREEN BADGES

Aberdeen City is promoting itself as a vibrant centre for shopping for the whole of the North East but some disabled people in the Shire and Moray have said they felt that they are being discriminated against when it comes to parking in the city centre. The problem centres round the issuing of “Green” badges by Aberdeen City Council which allows disabled people to park in a handful of spaces in the centre that are not available for people who have only the U.K. wide “Blue” badge. Those with Blue badges who park in these spaces are moved on by Traffic Wardens and could be liable for a fine.

The situation as far as we have been able to ascertain, is as follows:

When Green badges first came out they were restricted to people living in Aberdeen city and there were 19 extra spaces allocated to holders around the city centre – ranging from Justice Mill Lane and Rose Street to Queen Street and Spring Garden. A few (?) years ago the rules were changed to allow anyone who fitted the criteria laid down for Green badge eligibility on payment of the requisite £20.00 to park in the spaces. We didn’t know this till we investigated the “discrimination” and certainly most people living outside the city haven’t heard of it. But there is no discrimination so that’s good to know.

MS OUTREACH DAY THIS SPRING

The new date for Grampian Outreach Day originally planned for September ‘06 has now been set for Tuesday 17 April 2007. The full programme of events will be published in the Spring edition of “Update” but will include workshops on keep fit, led by a physio, emotional support, yoga and relaxation, massage, coping with relapses etc as well as information on fatigue, latest developments, etc, etc.

Meanwhile, please keep that date free in your diary! We look forward to seeing you.

THANK YOU ALL

We’d like to take this opportunity to thank all you wonderful people for the help and support you have shown us – from volunteering your services at open days to jumping out of aeroplanes to raise money for the Centre. We couldn’t function without you. Thank you!

FUNDRAISING

A number of very generous people have responded to our calls for fundraising by requesting friends and relatives invited to their Silver, Ruby and Golden Weddings etc. to donate money to the Aberdeen Branch of the MS Society, which funds the Stuart Resource Centre, instead of giving gifts. Another couple have donated the top tier of their wedding cake so that people can guess the weight at 50p per guess. Others have taken boxes of MS Stars and Key Rings to sell to their colleagues at work or at various Open or Fun Days……So thank you all for all your help, it is much needed and much appreciated.

KEEP THESE HANDY

We hope you’ll all have a really wonderful Christmas and New Year but sometimes things do go wrong. Below is a list of “out of hours” telephone numbers that could be of use if an emergency arises.

EMERGENCY NUMBERS
OVER THE FESTIVE SEASON

Emergency Services – Tel: 999
Police Non-Emergency – Tel: 0845 600 5700

NHS 24 – Tel: 08454 24 24 24
ARI Hospital – Tel: 0845 456 6000

Out of hours Social Work Service
Aberdeen – Tel: 01224 693936
Aberdeenshire –Tel 0845 840 0070
Out of hours Community Care
Aberdeen – Tel: 01224 622946
Aberdeenshire – as Social Work
Out of hours Homelessness
Aberdeen – Tel 01224 693350
Aberdeenshire – as Social Work
Council Housing Repairs
Aberdeen – 01224 480281
Aberdeenshire – 0845 608 1203
Tenant Helpline
Aberdeen – 01224 523000

Domestic Violence 24hr helpline
Tel: 0808 2000 247
NSPCC 24hr helpline – Tel: 0808 800 5000

Seasons Greetings and Best Wishes For the New Year

Christmas Tree Santa Picture

AN ELECTRONIC “UPDATE” ?

As you know, the SRC is looking at ways to both raise and to save money – nothing is sacred, everything comes under scrutiny. One method by which we might save a little money is on postage of “Update”. Of the thousand copies that are printed each quarter some are picked up from the centre, some are “hand delivered” in bulk e.g. to ARI and we post out approximately 700 copies every three months to people with MS, relatives, professionals and centres from Applecross to Orkney via Thurso, who have requested they be included on our mailing list. We are therefore asking people who receive “Update” by post if they would prefer to have it mailed to them via e-mail or access it via our website rather than receive a paper copy by post. Please let us know your preference.

NHS MINOR AILMENT SERVICE

This new NHS service is for people, including children, who don’t pay prescription charges and means that if your pharmacist thinks you need it you can be given a medicine without you having to pay for it. The service is for people who are registered with a G.P.’s surgery in Scotland, don’t pay for prescriptions and don’t live in a nursing or residential care home. To access the service you must register with the community pharmacy of your choice.

There are a number of big plusses for this service since you don’t have to make an appointment and can go along at a time that suits you, your consultation will always be with a qualified pharmacist who, if he/she thinks you need a medicine or product to treat your symptoms will be able to give it to you immediately without you having to pay for it and you’ll no longer need to make an appointment with your G.P. simply to get free access to “over the counter” drugs or medicines.

If the pharmacist feels you should visit your GP they will always recommend that you do so and may refer you themselves and of course you will not be able to get “prescription only” medicines without authorisation from your G.P.

If this new service works in practice as well as it appears to pan out in theory it should save the NHS vast sums of money in time saved by GP’s seeing only those people who really need to consult a doctor and many fewer “missed appointments” by patients not bothering to turn up because their symptoms have cleared up before the appointment time. The only drawback we can see is that, in the Aberdeen area at least, there are no 24 hour or late opening pharmacists – now, they all, including those in supermarkets, seem to close by 9.00pm. at the latest and 6.00pm. on Sundays.

NEW BOOKLETS

The MS Society have produced 3 new “Essentials“ booklets:

No. 20 Finding and funding residential care
No. 21 Exercise and physiotherapy
No. 22 A Guide to health care services

(Please note that some information in Essentials no’s 20 and 22 may vary in Scotland). For more information about Health Care or Residential care, please contact the SRC on 01224 692777

COMMUNITY ALARM SCHEME

The Community Alarm Scheme helps older people, people with disabilities and people who are medically at risk, to summon help quickly at anytime, night or day. It is staffed 24 hours a day, 365 days a year.

All a person needing help has to do is press the pendant which comes with the alarm system. Alternative arrangements can be made for those unable to press a pendant. After pressing the pendant a person will hear a continuous series of tones from the alarm unit which means that the central control is being called. Staff at the centre will answer the call and ask what help is required. If necessary the staff will contact a nominated key holder, a carer, doctor or the ambulance service.
Adaptations to the service are available to those who have hearing or sight problems.
For further information, contact your local Social Work Dept.

TELECARE SERVICE

Telecare is a term that covers devices installed in people’s homes that can trigger a pre-determined or escalating chain of response from a call centre. Typically, these range from a phone call to the person, to alerting a local carer, neighbour or social services, as well as alerting emergency services. It is a system that can be tailored to fit in with the lifestyle of a Carer and those they care for. It can also help anyone who is a carer especially if the Cared for person requires constant supervision. The aim of Telecare is to support people to stay at home for longer or speed up discharge times.
The system can alert emergency services in times of an emergency or it can be set up as a system so the Carer and Cared for can have their own space, an example of this would be having sensory systems in a persons room or house so the Carer will know what activity is going on while out and about or even just in the garden. The key is to design a system that suits the needs of those concerned which is adaptable to any changes in circumstances.

Aberdeen City Council in partnership with the Scottish Executive have been allocated some funds to get this system up and running within the city. Aberdeenshire Council have currently applied to the Scottish Executive for funding and are awaiting a response.

If you feel you could benefit from Telecare system and would like to be put forward for consideration or would like more information contact Paddy at VSA Carers Centre, Belmont St. Aberdeen. 01224 646677