M.S.P.s VISIT S.R.C.
At the end of May the Scottish Parliament met at King’s College Aberdeen,
An invitation was extended to all 9 Members of the Scottish Parliament who sit on the Health and Community Care Committee to visit the Stuart Resource Centre to meet clients/carers.
4 M.S.P.s did not reply to the invitation, 1 cancelled the visit at the last minute, 2 did not turn up, even though a date and time had been agreed.
The 2 M.S.P.s who did visit the centre were Mary Scanlon (Highlands and Islands) and Shona Robson (North East Scotland)
20 people met the M.S.P.s over the 2 days.
Topics discussed included:-
The need for more Neurologists and the long waiting lists to see one.
The lack of knowledge that most G.P.s have about M.S.
The lack of local respite care facilities.
The need for more Government monies to be put into research into the cause of M.S.
Although neither M.S.P committed herself to campaigning on behalf of people with MS both said they had enjoyed the visit and were interested in the viewpoints of all the people they met.
MS AND YOUR CHILDREN
MS is most commonly diagnosed between the ages of 20 and 50. This is also the time when many people have a young and growing family. Sometimes in the worry and anxiety over health and employment it is possible to forget that MS affects everyone – not just the person who has been diagnosed. Below is an article from one person who has been affected by MS.
I am Vicky and my mum has M.S. I am 11 years old and when my mum was diagnosed with M.S. I was 4 years old. Over the past few years I have realised what M.S. means to my mum and dad and how it affects me.
I remember when my mum had to stop driving, so I had someone different taking me to school. Also she couldn’t come to my Girls Brigade show, when other parents were there. I also didn’t get the attention from my dad, as he had to look after my mum. I feel like crying sometimes because I have no control of the situation I am in, and I find it hard to express my feelings. I feel I have to do things that I don’t really like doing. Also when I was younger kids at school used to tease me about my mum, how she couldn’t walk and do things other mum’s could. I also feel I have had to grow up quicker than my friends.
So you can imagine it affects every part of my life too.
Sometimes parents find it very difficult to talk to their children about the situation, perhaps thinking they can somehow protect them from the reality of MS. This young girl is lucky in that her mum and dad explained to her gently and from an early age about what was happening to mum but, even so, you can see the effect it has had on her.
If you or a family member would like to talk over your secret fears and feelings in private with a counsellor, or if you would just like some information written in a “child friendly” manner, please contact us on 692777.
The Young Carer’s Centre at the Castlegate , Tel. 625009 have regular meetings for young carer’s and can put you in touch with Young Carer’s Support Workers throughout the North East.
PSYCHOSOCIAL ASPECTS OF CARING: SOCIAL SUPPORT AND SOCIAL NETWORKS
OF CARERS OF PEOPLE WITH MS
This recent Scottish study on the need for more social support for adult carers of people with MS in order to combat isolation and loneliness and promote social inclusion is now complete. A copy of the interim report can be seen at the Centre. The full report ought to be available very soon.
THE IMPORTANCE OF PODIATRY
Ruth Bryan, Senior Podiatrist at Denburn Health Clinic, came to the Centre recently to talk about podiatry.
What is a podiatrist?
A specialist who provides a fully comprehensive foot health service for conditions affecting the foot and lower limb. A State Registered Podiatrist will have gained a degree after three years full time study involving both theory and practice. Many go to work for the National Health Service or into private practice and a few go on to train further as Podiatric Surgeons. A State Registered Podiatrist will have the letters SRCh after his/her name. Only in Britain are Podiatrists known as Chiropodists.
What can they do?
Podiatrists aim to maintain mobility, provide advice and care and treat those with needs and, where possible, prevent further problems arising. They also teach basic risk factors of doing care for someone else and provide leaflets that give advice on how to carry out safe nail care. Podiatrists are involved in Orthotics (sports injuries and problems with gait), can be instrumental in the early diagnosis of many diseases (e.g. diabetes and rheumatoid arthritis) and work with specialist services such as Nail Surgery, Biomechanics and Podopaediatrics (children’s feet). Foot care is important to ensure an active healthy life. Podiatrists enable feet to function normally without discomfort.
Who can access them?
All patients of Grampian Primary Care National Health Service Trust are eligible for (but not entitled to) NHS treatment assuming their G.P., Hospital Consultant or District Nurse has referred them. There are 70 SRP’s and 3 trained foot care assistants (who provide nail care only) working in Health Clinics, Residential Nursing Homes, visiting patients in their own and working from mobile clinics. Even so there are large waiting lists on the NHS. There are also a number of podiatrists in private practice. People should ensure any podiatrist they visit is State Registered. Costs for a private consultation are in the region of £20 – £25.
What about people with MS?
Excluding trauma (injury), MS is the most common cause of people having difficulty in walking for people in their 30’s to 50’s and is a high priority. Optic nerve problems can occur leading to poor vision and people therefore cannot tend their feet properly as they can’t see to
do so. Problems in the cerebellum can lead to ataxia of gait, uncoordinated limb movements. If people put excess weight on one foot or drag a foot this can lead to a build up of problems. Spinal cord problems can lead to sensory loss so that people do not feel pain, pressure or temperature changes and feet may be neglected.
HINTS AND TIPS FOR HEALTHY FEET
Hygiene – Feet should be washed daily with soap and water. Don’t soak feet as this dries the skin out. Dry feet properly, moisture between the toes can lead to fungal infections. (If fungal infections spread to nails these are much more difficult to deal with.
Nail Care – Use scissors or nail nippers or clippers. Follow the shape of the toes and never cut too short. Never cut down the sides. File nails to take away sharp corners.
Skin Care – Feet need oils to keep them soft and supple. Use moisturiser on a daily basis, especially round the sole or the foot and round the heel. Use pumice stone for rough or hard skin.
Sweaty Feet – (Called hyperdrosis) Hygiene is very important here. Use a light dusting of talc after drying. Charcoal insoles and astringent foot sprays are useful. Surgical spirits are very good for drying moisture. Change hosiery daily.
Hosiery – Change daily. If you have a fungal infection hosiery needs to be washed at 60 degrees (not 40) to get rid of spores but do not use if they shrink. Hosiery needs to fit and not be too tight.
Footwear – Feet should be measured for length, width and depth by a trained shoe fitter. Always try on both shoes as feet can vary by half a size (choose the larger size). Shoes should be lightweight and supportive with cushioned sole and seamless upper. High heels can mean poor weight distribution and cause the toes to bunch up. Take off shoes when you have the opportunity to let your feet “breathe”.
Slippers – Although it is tempting to use slippers if feet are uncomfortable they should not be used all day. They should always have non slip soles.
Feet have to last you all of your life. Be kind to them. Make them happy.
VISUAL PROBLEMS IN MS
Dr. Alastair Purdie, Specialist Registrar in Opthalmology at Aberdeen Royal Infirmary, who has been carrying out research into vision gave a talk and presentation at the Centre recently.
Visual problems can be some of the first symptoms of M.S. People may trip over small obstacles, have double or blurred vision and sometimes pain in one or both eyes. This can be the cause of much anxiety and can be very distressing but normally problems will clear up over a period of days or weeks.
One of the tests used to diagnose M.S. is the Visual Evoked Response (VER) Test. This measures the time taken for a message to go from the eyes to the back of the brain (occipital cortex). If there is a delay it is possible that demyelination has occurred in the optic nerves. Since the optic nerves are often affected, even when there are no symptoms noticed by the person, evidence from a VER can be very important.
Common eye symptoms of M.S. are double or blurred vision (diplopia) or vision with blind spots (scotomata) or a rapid flickering of the eyes from side to side (nystagmus). Some -times colours and contrasts seem not as sharp as normal and the colour red seems faded. An unpleasant pain which occurs on moving one or both eyes is a sign of optic neuritis. It can be accompanied by tenderness of the eyeball and sometimes generalised headache and blurred vision. It is caused by inflammation or demyelination of the optic nerve and can sometimes be successfully treated with over-the-counter painkillers, or, in more serious cases, with steroids.
Eye problems may often not recur but can be a feature of relapse or may manifest when a person is tired or fatigued.
Decisions about whether to drive or not are left between the individual and their G.P. If your sight is presently affected and you are a driver, stop driving and consult your G.P. By law you must inform the D.V.L.A. of a diagnosis of M.S. and they will contact your G.P. for ongoing clarification of your ability to drive safely.
It is advisable to inform your motor insurers of a diagnosis of M.S. or you may not be covered.
Anyone with eye problems, of any sort, should immediately consult their optician and their G.P.It is wise not to put any changes in your body down to “just M.S.” They should be investigated
CONTINENCE CLINIC AT S.R.C.
I am Wilma Nicolson a Continence Advisor who is based at Inverurie Hospital. As part of our service to help clients with bladder and bowel problems a Continence Clinic is held at the Stuart Resource Centre on the third Wednesday of every month.
Many people who have Multiples Sclerosis can have bladder or bowel problems and can be embarrassed about this, which may also stop them going out etc. There are many ways that we can help so you do not need to cope with this by yourself.
When I see clients for the first time an hours appointment is given with subsequent appointments being half an hour. These appointments are confidential. Before you come for your appointment a frequency volume chart will be sent for you to complete so an accurate picture of how much you drink and how often you go to the toilet is obtained.
I will test your urine to ensure that you do not have an infection. I may also perform a bladder scan to check that you are emptying your bladder completely.
Various questions will be asked to find out what is causing your problem e.g. how much do you drink, what do you drink, how long have you had bladder problems for, how often do you go to the toilet, what tablets do you take.
Following this I will then be able to provide you with information/leaflets and discuss different treatments which can often help, e.g. what to drink, when to go to the toilet, how to avoid constipation, pelvic floor exercises, provide practical support and may suggest referral to a Doctor for further help if this is necessary.
Please come and see us so we can help you.
If you are unable to come to the Stuart Resource Centre to see me please contact our friendly approachable staff on 01467 672748 so a visit can be arranged to see you at home.
LATEST IN RESEARCH
Those of you who use the internet to look for information on MS will know how frustrating and time consuming “surfing the net ” can be. For a range of good quality information on current research try logging on to www.msif.org/Research or subscribe (like we do) to the World of MS Update Service and they will automatically send you the latest information. Contact the service firstname.lastname@example.org.
STUDY DAYS AT
THE STUART RESOURCE CENTRE
In May the Stuart Resource Centre held it’s third study at the centre.
Forty five people from various organisations attended – Margaret Blackwood Housing Association, Social Work Dept.(City Council and Aberdeenshire Council), Kincardine Local Health Care Co-operative, Crossroads care staff from Aberdeen, Banchory, and Stonehaven and Grampian Primary Care N.H.S. trust.
The morning started with guest speaker Dr. Linda Gerrie, Consultant Neurologist, who explained what MS was, the treatments available and current research.
Four people who have MS then spoke about living with MS – this part of the whole programme proved to be the most enlightening and informative.
Next Dr. Ken Lawton, a local G.P., spoke about what your G.P. could do to help, the role of the Primary Health Care, and Complimentary Therapies.
After a lovely lunch, Carol Shaw, an Occupational Therapist from Fife Social Work Dept., spoke on the topic of Fatigue and ways of dealing with it.
Finally Dr. Maggie Whyte a Consultant Neuropsychologist from the A.R.I. spoke on the topic of the psychological aspects of MS.
From the evaluation forms that were returned, everyone thought the day had been a big success.
We are in the middle of arranging the next study days which will be held in November 2002 and May 2003.The study days are open to professional carers from the Voluntary Sector, Health, Housing and Social Work Depts. If you are interested in attending or know of someone who would like to attend the next study days please contact the Stuart Resource Centre on 01224 692777.
MAKE IT WORK FOR YOU
Access to Work -a government run scheme – can help you to make the most of your opportunities in work by helping you to tackle some of the practical obstacles you may meet if you have a disability. It offers practical help and advice in a flexible way so it can be tailored to suit your needs.
If your disability or health problem adversely affects the kind of work you usually do, is likely to last for twelve months or longer and you are unemployed, self employed or in a job Access to Work could help you. It applies to any job, permanent or temporary, part time or full time.
The programme can help in various ways e.g.
If you are unable to use public transport you might be provided with help with taxi fares or to pay a driver to take you to work and back.
If you have visual problems you might be supplied with a talking computer.
Various types of equipment e.g. something simple like a screen magnifier or a lightweight wheelchair or something much more complicated, whatever is required to suit your particular needs, may be supplied.
A support worker if you need practical help, either at work or getting to work could be engaged.
Help with adapting a car e.g. by fitting hand controls or adapting premises e.g. fitting an external lift can be available.
If Access to Work can help someone with a disability to do their job then that’s their job.
The Technical Advisor for Access to Work for Grampian, Highlands and Islands is based in Inverness but regularly comes to Aberdeen. If you’re having problems at work he can come along to advise both you and your employer. He’s very approachable.
Contact:- Bill MacKenzie by telephone on
01463 888284 or e-mail
SHOP HERE AT LEISURE
Birthday and Christmas shopping can be a nightmare for people who find it difficult to go into town or even nip down to the corner shop. In order to help out those of you who wish to send a card or give a small gift to your special friends and relatives there is a small shop at the Centre offering a range of interesting and inexpensive goods – some made especially to order. The shop is run on a voluntary basis by Nora Campbell and is usually open on a Tuesday morning and a Thursday afternoon but staff can show you round at any time. Come and browse.