reMEmber, the West Sussex charity for people with ME, is targeting the NHS and Government Departments as part of its campaign for better services for people who suffer from this chronic illness.
Janice Kent, Director of reMEmber, says “NHS services for
ME patients vary from place to place. Some do not have a doctor, and in some parts of the country there is no service at all.
“Nationwide we will be campaigning for centres of excellence, accessible to all patients. Locally we are pressing the authorities to provide help for children in West Sussex who suffer from this painful and debilitating illness.
“There is such a service in Brighton but children from outside Brighton cannot use it.
Their parents are being told they could try seeking private treatment for their children, or
take them to London. That is clearly unacceptable”.
reMEmber’s effectiveness as a campaigning charity is now well recognised, and they were recently invited by Annette Brooke MP, Chairman of the All-Party Parliamentary Group (APPG) for ME, to attend meetings of the APPG at Westminster.
Janice Kent says “A major concern of the APPG is the hassle ME sufferers are getting over State benefits.
At their meeting on 15 January we told them the experiences of many of our members. The Department for Work and Pensions and their agents, Atos, are putting people with chronic illness or disability through the same complicated work capability test as those who appear to be fully, or very nearly fit. This is a waste of time and public money.
One of our very ill members, who lost her job because of ME, said to the DWP “Do you really think I would give up the job I loved and a good salary in order to get £75 a week out of you?” Surely a letter from the patient’s doctor should be sufficient in cases like this?
Ms Brooke is raising this matter with the Minister at the DWP, and the Countess of Mar will do the same in the House of Lords.
Another important area that has been neglected in the past is biomedical research into this
Now Professor Stephen Holgate of Southampton has taken the initiative and is setting up a ‘research collaborative’ for ME, similar to the very successful one he headed for respiratory disease.
reMEmber has informed Professor Holgate of doctors and other healthcare professionals who have the expertise he is seeking, and the Professor has written to Janice Kent expressing his gratitude. The collaborative will be launched in London on 22 April, and reMEmber will be at the launch.
reMEmber holds self management courses for people with CFS/ME to help them understand the illness and how to deal with its effects.
More than 500 people have now
attended these courses, and most say that not only can they now manage their lives better,
they actually feel better.
The next course will be held at Haywards Heath Town Hall starting on Friday 15 February at 10.30 am.
For more information about this course or the work of reMEmber contact Janice Kent on 01273 831733, e-mail firstname.lastname@example.org, or visit www.remembercfs.org.uk
Secretary, reMEmber, PO Box 1647, Hassocks, West Sussex BN6 9GQ