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So much to say
I
was diagnosed with Motor Neurone Disease in 1999. I am 54 years old and the illness has now taken away the use of my arms and legs and left me unable to speak. If only I could talk...it would all be bearable then! The loss of my voice must be the hardest thing to take. So much I want to say to people (both nice and sometimes not so nice), and I can only grunt and nod like an imbecile. This is why continuity of care is important; a carer that is familiar with my needs makes it easier and less distressing for both me and the carer. There is nothing worse than not being able to let someone know what is wrong - it leaves them feeling they havent done their job properly, and me with the problem unsolved. If my voice had remained unaffected I would probably have been able to continue working, thus keeping my brain occupied at least. Nevertheless I consider myself lucky that I still have a reasonable quality of life thanks to the wonderful support I receive from my carers, nurses, physiotherapist, speech and language therapists, aromatherapist and the Motor Neurone Disease Association, who are always there when you need them. Another thing that makes my life bearable is my computer which I am able to operate by a button that I squeeze between my knees thanks to a clever piece of software called Easy Keys that was supplied by the Motor Neurone Disease Association. In addition to written communication I am able to use e-mail, send and receive faxes, read books and even shop online. I am also able to manage my finances and pay my bills using internet banking. This all takes a lot of time and effort but, when you cant do a lot for yourself, what you can do becomes your only mission. The problem with Motor Neurone Disease is that you never know how long you have got left. As a result, I have now celebrated my last Christmas four times. Although I can hardly move a muscle, people keep telling me that I look well - and I do feel well most of the time. Before I had Motor Neurone Disease I smoked heavily, drank too much and lived on a diet of junk food and stress. Now I do not smoke or drink and live on a healthy diet. In fact, it is likely that if I had not got Motor Neurone Disease I would be dead by now. I feel that it is important to take one day at a time and make the most of whatever ability you have left in the knowledge that things will be worse in a months time. The rapidly progressive

Hearing concerns
A charity for hard-of-hearing people in the UK is taking the opportunity of its 50th anniversary to publicise its work. Hearing Concern is a volunteer led organisation whose main objectives are to provide advice, information and support, to promote communication access and to raise public and professional awareness of the issues associated with hearing loss. Their chief executive says, Research shows that as a result of an ageing population the number of people experiencing hearing loss will increase by as much as 20-25 per cent by 2015. Furthermore, noise induced hearing loss could exacerbate this figure. Hearing Concern is dedicated to addressing the needs of this increasing group of people. Hearing Concern tel. 020 8743 1110, www.hearingconcern.org.uk.

In sharing his experience of Motor Neurone Disease, David Parker wanted to raise understanding among professionals of the positive things they can do to support people affected by a progressive disorder.
nature of the illness means that constant adaptations are required. Unfortunately, in many cases, equipment takes so long to obtain that its window of use is past before it arrives. Although at the moment I continue to enjoy a reasonable quality of life I live in constant fear of what the future may hold, and this only adds to the stress caused by the illness. It may well be that I would never opt for Assisted Suicide if it were to become available. However, knowing the option was there would alleviate much of my anxiety and be a source of great comfort. I would like to say thank you to all those who have been involved in my care. You really do make a difference and I hope that your support will continue to make my life bearable in the future, however long that is! The Motor Neurone Disease Association for England, Wales and Northern Ireland is at PO Box 246, Northampton NN1 2PR, tel. 01604 250505, fax 01604 638289, helpline 08457 626262, www.mndassociation.org. The Scottish Motor Neurone Disease Association is at 76 Firhill Road, Glasgow G20 7BA, tel. 0141 945 1077, fax 0141 945 2578, www.scotmnd.org.uk. Postscript David Parker died aged 54 in March 2003, some four years since being diagnosed with Motor Neurone Disease, and only weeks after writing this article.

Stroke developments
The All-Party Parliamentary Group for Stroke held its inaugural meeting earlier this year. MPs were concerned to hear about continuing variations in stroke care provision across England and Wales and will be asking parliamentary questions about this. Meanwhile, the Stroke Association has announced that, as current resources plans for stroke are often based on information that is 20 years old, it will be funding a 180,000 population based study. Researchers will study incidence, reoccurrence and outcome of stroke in a large population and results will inform planning of stroke services and preventative strategies. The Stroke Association has moved to Stroke House, 240 City Road, London EC1V 2PR. Telephone numbers remain the same including the switchboard on 020 7566 0300. The National Stroke Helpline number is 0845 30 33 100.

Making decisions
A consortium of twenty voluntary organisations is calling on the government to make parliamentary time for mental capacity legislation in England and Wales. The Making Decisions Alliance wants to protect people who cannot make decisions, or who need help to make decisions about their money, health and welfare. It believes the clear rights set out in Scottish legislation in 2000 would benefit professionals, patients and carers. It is calling on the government to define what mental capacity is, enable people to make as many of their own choices for as long as possible, and ensure people have access to support to help them make and communicate their decisions. In addition, it wants protection for people who cannot make their own decisions and for people to be able to make plans for the future while they are still able. Member organisations include the Alzheimers Society, The Downs Syndrome Association, Mencap, Scope and the Stroke Association. www.makingdecisions.org.uk

Reflections

Do we have a policy to make all clients aware of relevant voluntary organisations? Do we have a well managed system for accessing and adapting equipment? Do we offer as much continuity of care as we can?

SPEECH & LANGUAGE THERAPY IN PRACTICE SUMMER 2003