Sutton heeds the voice of people with Motor Neurone Disease

Sutton’s Liberal Democrat Council has joined forces with the borough’s Clinical Commissioning Group to recognise the challenge facing people with Motor Neurone Disease and those who care for them.

Sutton Council and Sutton Clinical Commissioning Group (CCG) are the first council and CCG in the country to adopt jointly the Motor Neurone Disease (MND) Charter in support of local people living with this terminal disease and their carers.

The decision was taken at the council’s Health and Wellbeing Board on 26 September. The voluntary and community sector representatives on the board also endorsed the charter and committed to joining the council and the Sutton CCG to ensure that individuals and families with MND in the borough get the best-possible support.

MND is a fatal, rapidly progressing disease that can leave people locked in a failing body, unable to move, talk and eventually breathe. It kills around a third of people within a year of diagnosis, and more than half within two years. There is no cure.

MND is still little understood and the MND Charter seeks to raise awareness of the disease and ensure that people receive respect, care and support that people living with motor neurone disease and their carers deserve and should expect.

The MND Charter has five key points:

  • People with MND have the right to an early diagnosis and information
  • People with MND have the right to high-quality care and treatments
  • People with MND have the right to be treated as individuals and with dignity and respect
  • People with MND have the right to maximise their quality of life
  • Carers of people with MND have the right to be valued, respected, listened to and well supported.

Cllr Simon Wales, Deputy Leader of Sutton Council and Lead Member for the Voluntary Sector, said:  “I am delighted that Sutton Council and Sutton CCG have adopted the MND Charter. It is vital that more people are aware of the needs of people with MND in the borough so those living with this devastating disease can maximise their quality of life.”

David Setters, who lives with MND and is the Campaigns Contact for the East Surrey branch of the MND Association, which covers Sutton, said:  “Receiving a diagnosis of MND is devastating. To know that Sutton Council and the CCG are supportive of our efforts to improve standards of care and treatment is a major boost.

“MND is an extremely complex disease, involving health and social care professionals from many different disciplines, and we look forward to working with services in the borough to further ease the burden on those families affected.”

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The MND Charter was signed jointly by Sutton Council and Sutton CCG at Civic Offices. From left, Cllr Ruth Dombey, Leader of Sutton Council and Chair of the council’s Health and Wellbeing Board, Dr Brendan Hudson, Chair of Sutton Clinical Commissioning Group (CCG), David Setters of the MND Association, who lives with MND, and Cllr Simon Wales, Deputy Leader of Sutton Council

 

About Motor Neurone Disease

  • MND is a fatal, rapidly progressing disease that affects the brain and spinal cord.
  • It attacks the nerves that control movement so muscles no longer work. MND does not usually affect the senses such as sight, sound, feeling etc.
  • It can leave people locked in a failing body, unable to move, talk and eventually breathe.
  • It affects people from all communities.
  • Some people may experience changes in thinking and behaviour, with a proportion experiencing a rare form of dementia.
  • It kills a third of people within a year and more than half within two years of diagnosis.
  • A person’s lifetime risk of developing MND is up to 1 in 300.
  • Six people per day are diagnosed with MND in the UK.
  • It affects up to 5,000 adults in the UK at any one time.
  • It kills six people per day in the UK – just under 2,200 per year.
  • It has no cure.

The MND Charter can be read here.

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