June, July and August 2005

Good News

No more prescription charges for disease modifying drugs!

Since May 2005 no one in Grampian or Highland region should still be paying for their prescriptions of Disease modifying drugs, providing that they are being delivered to them by one of the pharmaceutical delivery companies.

Recent changes to the administration system for these drugs (Betaferon, Avonex, Rebif and Copaxone) will mean that all patients will have their drugs delivered either directly to their home or to an address of their own choosing, have their used sharps bins safely uplifted, and will also no longer incur a monthly prescription charge fee. For many people this will amount to annual savings of over £88 per annum.

The changes to the prescription system have also significantly eased the administrative burden on the MS Nurses and the Neurology dept at ARI who have been issuing over 2500 prescriptions each year for these drugs.

Latest on Goat Serum

Researchers in Oxford say they are encouraged by the findings of a trial of the goat serum treatment “Aimspro” in optic neuritis, one of the most common symptoms of MS. The patients taking part had entered a chronic phase of visual loss.

It is hoped that the trials will be completed in one year’s time.

Aberdeen City Council Community Occupational Therapy

The Community OT Service is available to people of all ages who experience difficulties coping with everyday tasks because of a disability, illness or the ageing process. The service aims to enable individuals to remain as independent as possible within their own homes and in the community.

As part of the joint future agenda staff in the Community OT Service have moved from the offices at Causewayend and Woodhill House and are now based in GP surgeries and Health clinics across the City. They are now members of the new Integrated Health and Social Care teams along with District Nurses, Health Visitors and Care Managers.

The Intake Team and Duty point for the Service are now based at the Links Resource Centre on the City Hospital Site. If you require advice or information or wish to make a referral you can contact the Duty Occupational Therapist on 01224 558333. The Duty OT is available from 9am – 12.30pm and from 1.30pm – 4.30pm, Monday to Thursday. On Fridays the service closes at 3.30pm.

A Honey of a Treatment?

In recent years honey has begun to enjoy something of a renaissance in it’s use as a treatment for persistent skin infections and wounds. Honey is an ancient traditional wound dressing that has been used by many cultures throughout history but it is only in the last decade that the medical establishment has begun to take more seriously the clinical benefits for the treatment of wounds.

All honey has some level of the antibacterial chemical hydrogen peroxide produced by enzymes but these enzymes are easily destroyed by exposure to heat and light and by contact with body fluids. However some rare honeys have an antibacterial action separate from the peroxide effect.

Studies in New Zealand on the healing properties of honey have brought new hope that, in particular, “Active Manuka Honey” can greatly assist in the treatment of pressure sores, skin ulcers and large septic wounds.

Worth some further testing? We think so, but talk it over with your GP or nurse.

Aberdeen Healthy Living Network

Aberdeen Healthy Living Network’s aim is to reduce health inequalities and improve health among people living in economic disadvantage in Aberdeen City. It brings together 30 organisations from the public, voluntary and community sectors who have an interest in this and is open to any agency or group who supports its aim. Its main source of funding is the Big Lottery Fund (previously NOF – Healthy Living Centres). Other funding comes from Aberdeen City Council and NHS Grampian.

The Network targets ‘life circumstances’ which impact on people’s health and we have three programme themes: Cash in Your Pocket, Life Skills Development and Parenting. Money has been allocated to various projects including a Volunteer Parent Mentoring Scheme, Travellers Outreach Work and Credit Union development.

A small amount of money exists within the Network to be allocated to organisations for ‘Group Work’ under both the Life Skills and Parenting themes. This funding can be applied for by organisations that are already involved in the Network or others who work with economically disadvantaged people and who share the Network’s aim.

The Big Lottery Fund funding is for five years and the Network has just completed its second year.

The “Cash in your Pocket” Project may be of particular interest to people with MS in that it aims to make money go further and maximise peoples income by helping them to access the range of benefits and resources that they are entitled to and introduce means to “make money go further“. Some of the agencies involved are Care and Repair, Citizens Advice Bureau, Debt Counselling, Pensions Service, Aberdeen Welfare Rights, Age Concern, SCARF (Save Cash & Reduce Fuel), Community Food Initiatives North East (Food Co-ops) and Grampian Support Forum for Credit Unions.

Further information on any aspect of the Network’s work or the Group Work funding can be provided by Diane Miller, Network Co-ordinator (Telephone – 01224 523832) or Fiona Smith, Network Administration Assistant (Telephone – 01224 523745)

A Word of Warning!

One person who occasionally contacts the centre, called us recently very upset about the pressure being applied to her to buy a “mobility scooter” from a firm with a base in Inverness. Apparently the salesman had taken out one model to show her and was very persistent and latterly quite rude when it was finally made clear to him that a cheque was not forthcoming that day. Salesmen for this type of equipment often work on a very large commission and may on occasion become “overenthusiastic” to say the least. DON’T ALLOW YOURSELF TO FEEL PRESSURISED OR INTIMIDATED.

In this particular case, not only was the type of scooter he had come with not the style she was interested in, but the handles were set too high for comfort and still he persisted.

Choosing a scooter or electric wheelchair is a huge investment and unfortunately there is no provision within the NHS for an occupational therapist to advise you. (How we wish Hillylands was still open.) Try to make the effort to visit the showrooms of a reputable dealer and try out a number of styles, go away, think about it, come back for a second or even third trial if necessary. You have to make sure you get one that is “just right” for you before parting with any money – and sign nothing without reading the small print first.

We contacted Trading Standards (www.tradingstandards.gov.uk) over the above and they set us right on “solicited” and “unsolicited” calls. It appears a solicited call is one where e.g. you have seen an ad in the paper and contact the firm to arrange for a representative to call at your home i.e. you have invited them there. An unsolicited call is where a salesman calls you or just arrives on your doorstep and tries to sell you something. Unlike with an unsolicited call, if you were to sign any documentation, WITH A SOLICITED CALL YOU DO NOT HAVE A SEVEN DAY COOLING OFF PERIOD WITH CANCELLATION RIGHTS

Mile of Copper

We’ve travelled 847 feet to date and raised £1525.88p. Thanks everyone. Keep it coming.

Transport Fund

The fund now stands at £421.90 of which £250 came from a single raffle organised by Pat Spanswick. Grateful thanks.

Don’t Delay – Join Today

At the Stuart Resource Centre we are often asked, what are the benefits of joining the MS Society? There are many benefits of joining the society, whether people join as a local or as a national member. National membership ensures anonymity and confidentiality, local membership ensures you don’t get left our of social events and local news. Benefits include:
A bi-monthly magazine, MS Matters, with news and articles on living with MS and MS Research
A wide range of booklets giving you information on MS with free publication list and order form.
Local or regional newsletters.
An opportunity to influence health and social care policy relating to MS through the Society’s campaigns, surveys and lobbying.
Over 360 MS Society local branches that offer support and a chance to meet others affected by MS.
An opportunity to use the special services and products designed for the MS community, e.g. insurance
Regular updates on research.
A role in influencing the aims and priorities of the MS Society through voting at local and national level.
A chance to join with others to improve the quality of life for those affected by MS.

The MS Society also provides training for people who work with people with MS, funding for MS nurses, self management courses, holiday accommodation, help with transport, financial support grants, etc. etc.

Of course all this costs money and other resources like time and energy so the larger the membership, the bigger the pool of people to call on for assistance and expertise and the more likely the Society is to be taken very seriously in “influential circles” like health and social services departments.

Although the MS Society is required by law to help all people with MS and not just members of the Society who have MS, if people don’t join the Society there will be no MS Society to help anyone or influence how services develop.

For only £5 per year you can join the MS Society and help people with MS – you don’t have to have the condition yourself. A reminder will be sent to existing members once a year to renew their subscriptions.

Exhibition/Open Day in April

Since it was MS Awareness Week, the Stuart Resource Centre decided to put on an exhibition to let people come in and find out about MS and also to see what other facilities are available to people with MS and their carers in the Aberdeen district. The event was opened by the Lord Provost of Aberdeen John Reynolds, the Lady Provost was also present. The exhibition was held in the main hall of the centre and there were several stalls set up to provide information about different helping organisations. I was personally impressed by the amount of facilities that there are in Aberdeen to help people with their MS. The exhibition was open to everyone and examples of some of the local exhibitors were Horizons, the Continence Nurse, Grampian Friends of Arms, DPHS (Disabled Persons Housing Service), Home Choices, Access to Work etc. Also the people who were at the stalls were very welcoming and would answer any questions you had. It was a fantastic idea because if there was anyone there like me who didn’t know Aberdeen well and doesn’t know the facilities open to them, this exhibition proved to be very useful.

Another thing that was being held in the Centre was 4 separate talks/demonstrations done by four different complementary therapists who were through in a second room. There was a reflexologist, someone who does Indian head massage, another that does acupuncture and yoga and finally someone who does angel and crystal healing. All the talks went down well and many found it very helpful and full of information they didn’t know before. Many of the visitors that went to the sessions said they would consider the alternative methods.

The day was a success all round. All the staff made a huge effort to help people in any way they could and ensure everyone was ok. Including the exhibitors there were approximately 134 at the SRC on the day. The Centre also hosted a coffee morning and car boot sale on Saturday 15th April. This was put on to raise funds for the MS Society. Although the weather was against them as it rained most of the time, that didn’t scare people away. The MS Society Aberdeen Branch is pleased to say that they managed to raise £452 on the day. The exhibition and the coffee morning/car boot sale were both organised really well so the Committee, Staff and Volunteers should be proud, all the hard work really paid off! The Open Day also heralded the start of the “Black & White” exhibition and sale of original art by members of the Stuart Resource Centre art group. These striking art works are on display until the end of June. Come along and take a look.

Well done everyone.
Alyson Mooney, HNC Social Care Student on Placement

Indian Head Massage

The Open Day at the Stuart Resource Centre was a big success. There were representatives from many helpful agencies willing to answer questions and say what they can offer. There were also a number of “alternative therapies” to learn about. I had no knowledge of Indian Head Massage and, along with a big group, went to hear what that was about from Karen. She outlined that the aim is to relieve symptoms of stress and tension, to help relaxation and to promote healing by unlocking trapped energy.

Treatments vary on the person’s need and can last between 15 and 60 minutes. She offered to do a “taster” and I was privileged to be the “head”. I sat on the chair with eyes closed. Karen gave me a crystal to hold and there were soft background sounds of wind chimes and wind. The head massage was firm but, like the music, it was soothing too. There was a surprising sensation of being at the receiving end of something very positive. I lost track of time and the coming back to awareness of where I was, Karen managed very gently. I felt nurtured and “cared for”.

Since then there has been a definite benefit. I have felt more positive in spite of the dreaded MS. I cannot claim to be rejuvenated but I have managed to tackle things which I have been avoiding. I would recommend this as a very suitable natural healing therapy. Thank you for the experience.

Agnes R. Cook

Karen has offered to provide sessions of Indian Head Massage for people with MS who visit the Stuart Resource Centre on a monthly basis for a four month trial. See programme for details.

Dial-a-Ride

After reading about Dial-a-Ride bus in the last issue of the “Up Date”, I thought I would try this service. I phoned 0845 60 11 600 and made my first booking with a very friendly person at the other end of the phone.

The bus can take up to 5 wheelchairs and the 2 drivers are very helpful and strap the wheelchairs in securely. I was taken to my destination and was picked up – both on time. The return journey cost me £2. Jim and Ian the drivers are both very friendly and look after you well.

I have now used it a few times and think Dial-a-Ride is a great service and I can recommend you try it. I think it will become very popular once everyone starts using it and could come a victim of its own success. The drivers did say to me that if the service is well used another bus could be possible. Why not give it a try, I am sure you will be as impressed as I was.

Pat Spanswick

Aberdeen/shire Care and Repair

How can they assist? Many homes are in need of improvements such as window repairs, upgrading heating facilities, adaptations to the kitchen or bathroom to suit individual needs. A Care and Repair advisor can discuss what repairs and improvements are needed, obtain quotes from reputable contracts, assist with paper work etc.

Who is eligible? Anyone over 60 or who has a disability (any age) who either own their own homes or live in rented accommodation are eligible for the Care and Repair service.
People who rent their homes from the Council or Housing Associations are not eligible.

What about the cost? The advice they provide is free, the costs of repairs are not. The Care and Repair advisor will help you apply for grants and source if there are any other types of funding available to pay for the work to be done!

For more information or to have a leaflet sent out to you ring (for Aberdeen) 01224 628109
(for Aberdeenshire) 01358 721672

Transport Problems

Unfortunately the Aberdeen Branch of the Multiple Sclerosis Society have reluctantly taken the decision to withdraw transport to it’s holiday home at Leuchie. Trying to get volunteer drivers and escorts has been very difficult over the last few months. However they are still able to provide transport locally i.e. to respite homes and holiday homes in the area.

If you know of anyone who can spare a few hours to help out please contact the Stuart Resource Centre on 01224 692777.

The Stuart Resource Centre Lunch Club

It sounds a long fancy name but it’s only a group of friends who go out to a hotel, or a pub on the second Sunday each month for a meal and a gas.

We go to places such as The Greentrees in Dyce, The Shepherds Rest in Weshill, The Torryburn Hotel in Kintore, The Westburn in the Westburn Park.

Feel free to come along and join us, to find out where and when phone the Resource Centre on 01224 69277.

Bob & Heather

Paul’s Piece

Some people wax lyrical about the Stuart Resource Centre others are much shorter and to the point. We asked one “regular” to the Centre for his views.

Q. Hello Paul – you’ve been coming to the Centre for quite a while now, can you tell us what you get out of it?

Ans. I get a lot out of coming here. I have found I can get on with life because the first two years I was diagnosed with MS I had a real struggle and couldn’t cope with life but since I’ve been coming to the MS Centre I’ve found it has really helped – it just gave me a purpose to carry on in life.

We don’t feel in this instance we need say any more than “Come and join us for a session. You might enjoy it.”