Wymondham widow hopeful after councillors back Motor Neurone Disease Association charter
PUBLISHED: 08:32 29 January 2017 | UPDATED: 21:38 29 January 2017
The widow of a motor neurone disease sufferer is hopeful after county councillors backed a charter to improve awareness and care of the debilitating illness.
Members of the Norfolk County Council adult social care committee voted unanimously to support the nationwide document by the Motor Neurone Disease (MND) Association.
If approved by full council in April this year, the charter will be used as a guide for different organisations and health services to boost support for MND sufferers and their carers, who are often relatives.
The MND association launched the campaign to get county councils to back its charter last year and so far 30 have adopted it, including Suffolk County Council.
Sue Heal, 62, from Wymondham, whose 58-year-old husband Jim died of MND in February 2012, said: “The charter is about getting the right care at the right time and in the right place.
“Unfortunately this condition is still little understood by some and it is not given enough attention by decision makers. The MND charter was launched to change this.”
MND is a fatal, rapidly progressing disease that affects the brain and spinal cord.
It attacks the nerves that control movement so muscles refuse to work.
Mrs Heal’s husband, a formerly fit and healthy physics teacher, had the condition for eight years and ended up locked in his own body unable to move or communicate.
She said she was “really pleased” the council’s adult social care committee decided to support the charter.
Mrs Heal, a volunteer for the Norwich and Waveney Branch of the MND Association, said people experienced different problems concerning care and support.
These included having to fight for an assessment for continuing health care.
She also had personal experience of having to explain the health impacts of MND to a variety of professionals during her husband’s eight years with the condition which was “very tiring”.
Mrs Heal said community services and the NHS needed to be more joined up in their work when helping MND sufferers but she added the MND association wants to work with those organisations.
The five key points of the Motor Neurone Disease (MND) Association charter:
1. The right to an early diagnosis and information.
2. The right to access quality care and treatments.
3. The right to be treated as individuals and with dignity and respect.
4. The right to maximise their quality of life.
5. Carers of people with MND have the right to be valued, respected, listened to and well-supported.
Symptoms and statistics surrounding MND:
There is no cure for MND which attacks the nerves that control movement so muscles no longer work.
The disease can leave people locked in a failing body, unable to move, talk, swallow and eventually breathe.
Around 35pc of sufferers experience mild cognitive change causing difficulties with planning, decision-making and language.
Some 15pc of MND sufferers show signs of a form of dementia resulting in behavioural change.