March, April and May 2004

Does Smoking Increase Risk of MS?
The cause of MS is currently unknown although it is widely thought that a combination of genetic and environmental factors act to increase a person’s susceptibility to developing MS. Infectious agents, such as a virus, have been implicated as triggers for MS onset, but there are likely to be a number of other factors that play a role. A recent questionnaire in Norway elicited information on 22,312 people. The survey included questions on health and lifestyle including whether the participant had MS, age of diagnosis, and whether they currently or had ever smoked.

87 people (0.39%) from this sample reported having MS. All current smokers had started smoking before the onset of MS, as had the majority of “previous” smokers. Almost 25% of people with MS reported never having smoked.

The study concluded that the risk of developing MS among people who smoked was nearly twice as high as in people who reported never smoking, However, no differentiation is made between the risk of developing MS, associated with current and past smokers. Based on these results, the study suggests tobacco smoking may be one of several risk factors for developing MS. The authors propose that smoking could influence the risk of developing MS by affecting the immune system directly, but suggest further exploration to look at the effects of some specific components of tobacco smoke . A major limitation of the study is the small number of people surveyed with MS, which makes the findings not significant.

New Research with Goat Serum
National media coverage in the UK of a potential MS drug treatment from goat serum has attracted considerable interest. A placebo controlled, double-blind randomised trial of the drug is being carried out in London. The drug uses polyclonal antibodies from the serum of goats that have been innoculated with a variety of vaccines to generate neutralising antibodies.

These antibodies are proteins produced by white blood cells in response to an antigen (foreign body). Different antibodies in the group recognise different parts of the antigen and destroy/neutralise it. Goat serum was originally developed to treat HIV/AIDS but did not work well enough to justify further development however the strong anti-inflammatory component of the serum is thought by researchers to be “potentially useful” in the treatment of MS.

The Cloning Debate
In February it was reported that a team led by a respected South Korean scientist took eggs from 16 women donors and cloned 30 embryos containing over 100 cells. From those they harvested a colony of stem (or “mother”) cells that have the potential to develop into many different types of cell – from kidney to brain or skin cells.

Stem cells are found in large numbers in embryos (ESC’s) and in smaller numbers in adult tissue (ASC’s). Researchers still do not know which are best. ESC’s have the potential to give rise to every type of cell. ASC’s, with more limited development capacity, are less likely to give rise to tumors or be rejected.

Few people are concerned about research on ASCs but some people believe using human embryos for research is unethical others believe it would be morally wrong to stop this kind of research because it has the potential to alleviate the suffering of many people.

This latest breakthrough using a donor egg and a cell from a person to be cloned produces an embryo designed for “therapeutic” rather than “reproductive” cloning and would bypass problems of rejection. But it again raises the ethical question of whether or not human embryos should be used in any research. The United Nations recently postponed a decision on a worldwide ban on all forms of human cloning which is opposed by Britain.

What do you think?

On The Home Front
If the condition of a person with physical disability deteriorates to the extent that their own home is no longer suitable for their needs what can be done? The first choice for most people is to remain in their own homes with structural adaptations e.g. widened doorways, hand rails, ramps, a shower cubicle rather than a bath or even a small ground floor flatlet built either by converting a garage or building a complete new extension. For many people this, combined with a Care Package devised in conjunction with a Social Work Care Manager, may be enough. Others however may have to face the possibility of moving somewhere else so what are their options?

First stop would be to contact Home Choice, the agency that co-ordinates all “social housing” in the Aberdeen/Aberdeenshire area. Social housing includes Council, Housing Association and Voluntary Sector Housing and Accommodation. Home Choice is based in George Street, Aberdeen, close to the St. Nicholas Centre, and a personal visit to pick up an application form would probably be quicker than trying to get through by telephone as their line (Tel. 01224 261000) is almost continually engaged. The choices range through:

Standard housing and ground floor flats that might be suitably adapted.
“Amenity “ standard housing e.g. with raised electric sockets and lowered light fittings.
“Sheltered” housing – offering varying amenities but all with a day time warden in common. Certain complexes offer some residential care and some have a communal area and rooms set aside for visiting O.T.’s hairdressers, chiropodists, C.C.T.V. etc.

“Very Sheltered” housing e.g. the new £7,500,000 “Kingswood” complex offering 40 flats and 30 cottages with 46 previously built but now fully upgraded special purpose cottages offering full time permanent care staff on site. Spaces in a complex such as this have been long awaited have filled up quickly, The complex was built according to the advice and guidelines issued in the recent “Housing for varying needs” report and has a communal dining area, warden call system, “bookable” guest accommodation and assisted bathing if required. Kingswood is a Council initiative and very expensive. Unfortunately although more such complexes are required they are not easily affordable but the Council is very pleased to work in conjunction with Voluntary Agencies to earmark land where more such initiatives might be offered and to assist in any way possible.

“Housing Association” homes vary from association to association but for people with physical disabilities probably the best known in Aberdeen are the Margaret Blackwood complexes at Raeden and Eday Gardens. Again there are a range of options from mainstream houses through sheltered accommodation to 24 hour supported accommodation with full care.

“Voluntary Sector” accommodation such as the newly opened Dee View Court run by Sue Ryder Care and developed in partnership with a number of agencies such as Aberdeen City Council Social Work Department, NHS Grampian, Communities Scotland, Scottish Enterprise Grampian, Scottish Huntington’s Association, Sue Ryder Care and current and potential service users, specifically for people with neurological conditions, seems to be the way forward. Deeview Court offers individual freedom within a safe and caring environment for individuals who cannot live at home but for whom the option of a nursing home or hospital is inappropriate for long term care. In addition there is a café, open to the general public, a Cyber café, Hydrotherapy Pool, Multi-Sensory Room, Physiotherapy Room and Craft Room, an on-site Visitors House to enable friends or family to stay on a regular basis as well as two Respite Care beds due to become available in April.

Finally, there are a large number of the more conventional private and council run nursing homes from which to choose, each offering full care. Unfortunately the majority of these are really set up to cater for elderly people and people perhaps only in their forties or younger might feel very uncomfortable and unhappy in one of these.

The above just touches on some of the options available for people no longer able to stay in their own homes. If you have a condition such as MS it pays to think ahead and “Be prepared”. Living in a sheltered community can help stop feelings of isolation yet still allow the individual as much freedom as they wish with the security of knowing there is someone there in an emergency. It’s worthwhile putting your name on the list at “Home Choice” – after all if you are offered accommodation but feel that “now” is not the right time you can always turn it down. But if your name’s not down you won’t get the opportunity.

The NHS Community Forum
Both the National Health Service and Social Work are increasingly asking for input from a wide range of people in the community ranging from high profile professionals through ordinary service users. One representative, formerly a Health Care Professional and now a person retired with MS is a member of the NHS Community Forum. We asked her for some information on what goes on.

Q. What is the NHS Community Forum?
Ans. The Forum was set up in December 2001 beginning with a plan called “Towards a Partnership with People”. The aim is to plan future services and to help to face up to the decisions and choices ahead in Grampian. Members of the Forum work with clinical staff and managers about problems in the hope that future health care will meet needs.

Q. What does this Forum have to do with people with MS?
Ans. Until December 2001 people with specific problems with health were represented at a quarterly meeting called the Physical Disability Consumer Group. This included MS.

A. Who is represented in this Forum?
Ans. There is a wide spectrum of interested people with direct knowledge about the problems involved with poor health. There are also Community Councillors.

Q. What is it for?
Ans. The meetings usually have a definite structure or presentation. The last Forum was an outline by Dr. George Crookes, a G.P. and member of the Grampian Health Board Trust. He spoke about the increased difficulty in staffing Doctors’ Practices and that this was leading to a big change which is to happen on 1st April 2004. The change is that GP’s can no longer give 24 hour care for patients. Out of hours care will be provided by other health professionals as appropriate and patients will be registered with a practice rather than one doctor. (More details can be provided by contacting the Stuart Resource Centre.)

Q. How can you let your needs be put to the NHS in Grampian?
Ans. Meetings are held quarterly and questions and observations should be put in writing if possible and given to staff of the Stuart Resource Centre. They will then be passed on to me as a representative and brought up at the Forum.

NB Aberdeen City Council has just created the post of Development Officer for Service User and Carer Involvement. The main purpose is to facilitate service users and carers to become involved in the development of services, particularly in relation to the Joint Future process – the process of integrating community care services provided by NHS Grampian and Aberdeen City Council. The new Development Officer is Gordon Edgar who can be contacted on 01224 264088. He is particularly interested in hearing from people who are part of any process currently involving service users/carers or interested in becoming part of such a process.

MS Society News
The Annual General Meeting of the Aberdeen Branch of the MS Society will be held at the Stuart Resource Centre at 7.00 p.m. on Wednesday 28th April. Due to the retirement of a number of members who have given years of sterling service the Branch is looking for some new volunteer Committee members.

Committee members must be members of the Society (annual membership fee £5.00) and be proposed and seconded by Society members.

Membership is open to people with MS or anyone with a private or professional interest in MS. If you’d’ like a say in how the Society is run then remember to join or renew your membership before the A.G.M.

Keeping Active When You Have MS
This new fact sheet stresses the importance of activity and exercise for people affected by MS. It suggests suitable activities for people with MS to try, and includes details of a large number of organisations, that specialise in activities and sports for people with disabilities.
If you would like a copy, please telephone the Stuart Resource Centre 692777.

Just Me – A Book of Verse
Geraldine Stephenson has written 25 poems, some humorous, outlining her thoughts and feelings on discovering she had MS. A donation will be given to the MS Society for every copy sold. Tel. 01499 302995 for further info or ask at the Centre.

Cures and Carpetbags
When work begins on a new radio series, it’s
often difficult to predict whether people will be willing to tell their personal stories in a radio interview.

That’s how it was when BBC Radio Scotland began researching Cures and Carpetbags – a series of six programmes looking at five major health conditions and how they can be treated with complementary and alternative therapies.

But when people feel strongly enough about their illness they are frequently willing to share their experience and will agree to take part. And that’s what we found with our programme about multiple sclerosis.

Presenter Edi Stark visited Aberdeen’s hyperbaric oxygen therapy centre and discussed the benefits as clients emerged from the tank. MS sufferer Anne McRae even allowed us to make recordings while she had her feet massaged in a reflexology session with therapist Marian Joyce.

The programme about MS also features a spokesperson from the MS Society Scotland, Ninewells Hospital neurologist Dr Jonathan O’Riordan and other sufferers from around Scotland.

You can hear Cures and Carpetbags at 11.30am, beginning on Wednesday 3rd March, 2004, on BBC Radio Scotland, 92-95FM/810MW. The MS programme will be broadcast on the 24th March.

Dates for Your Diary
Sunday 18th April – Saturday 24th April
National MS Awareness Week

Wednesday 31st March
Final submission date for A5 Art Project entries to the Stuart Resource Centre

Wednesday 21st April
Cynthia Benz author of “Coping with MS” will be at the Stuart Resource Centre to give a talk and workshop in the morning and evening.

Never Enough Cash?
You may be entitled to a Prescription Exemption Certificate: There are a number of criteria which allow people either full or partial help on prescriptions. Most are concerned with age or income but there are some medical conditions where people qualify for exemption. One of them is that people with a continuing physical disability which prevents him/her leaving their home except with the help of another person are entitled to these certificates. The certificate would have to be signed by your doctor.

You might be able to pay less in Council Tax: If you have a disability and your home has been specially adapted for wheelchair use e.g. doorways widened your home may qualify for a band reduction in Council Tax, e.g. an Aberdeen property in Band D ( £1331.00 p.a.) could be reclassified as Band C (£1183.11p.a.).
If you’d like some further information and advice on what you might be eligible for the Centre has an expert who visits once a month to give free and confidential advice on benefits. Or call the Benefit Enquiry line Tel. 0800 88 22 00 or visit www.dss.gov.uk/ba

The 65 Special
The 65 special is a service that is available in the Stonehaven area, to take people to various locations. The service operates free for people who hold a concession or Taxi card. All buses are equipped with tail lifts, seat belts and with removable seats for easier wheelchair access.
The following routes are available:

Every Monday, there is a service to and from Asda or Stonehaven
Every Friday, there is a service to Drumoak and Banchory
There is also a monthly run to Aberdeen on the second Wednesday of the month.

If you would like further information of the Dial a Trip service please contact Helen Stewart, Forest View Centre, Stonehaven. Tel no. 01569 765765 or 013398 87070. A telephone service is available out with office hours.

Reaching For The Sky With Our Mile of Copper Appeal
As of Friday 20th February we have raised four hundred and fifty pounds and fifty one pence
(£450.51p). That means we’ve travelled just over 250 feet or 83 yards together.
We’re getting there with your help. Thank you all.