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09 February 2017

Wiltshire Council and Wiltshire CCG hears voice of people with motor neurone disease

The joint signing of the charter demonstrates our partnership commitment to doing everything we can to continue to provide the support that's needed for people and their carers living with MND

Jerry Wickham

Wiltshire Council and the Wiltshire Clinical Commissioning Group (CCG) have jointly signed a charter pledging to do everything they can to support people with motor neurone disease (MND) after a Wiltshire resident campaigned to raise awareness of the disease.

Both organisations have now adopted the motor neurone disease (MND) charter in support of local people living with this terminal disease and their carers, after John Howell, who has been living with MND since 2014, contacted Jon Hubbard, his local councillor. Mr and Mrs Howell have been campaigning to raise awareness of the condition since his diagnosis.

The MND charter is a statement of the respect, care and support that people living with MND and their carers deserve and should expect. The five points of the charter are:

• The right to an early diagnosis and information
• The right to access quality care and treatments
• The right to be treated as individuals and with dignity and respect
• 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

Chris James, director of external affairs for the MND Association said "The importance of the MND charter is undeniable. We want everyone to be clear that access to the right care, in the right place, at the right time, as set out in our charter, can transform lives."

Alison Aviss and Heather Smith from MNDA North Wiltshire Group, said: "We are delighted that Wiltshire Council and the Clinical Commissioning Group (CCG) are demonstrating their joint support by signing the MND charter. We thank Wiltshire councillors, Jerry Wickham and Jon Hubbard and Tim Burns from the CCG for demonstrating their support for people affected by MND in Wiltshire."

Jerry Wickham, Wiltshire Council cabinet member for adult care and health, said: "I am pleased to support Mr and Mrs Howell and would like to thank them for campaigning to raise awareness of MND and the impact it can have on families and friends. The joint signing of the charter demonstrates our partnership commitment to doing everything we can to continue to provide the support that's needed for people and their carers living with MND."

Tim Burns, neurology lead commissioning manager for Wiltshire Clinical Commissioning Group, said: "Wiltshire CCG is pleased to support Wiltshire Council in the signing of this MND Charter. The CCG commissions a wide range of services to ensure patients with MND and other neurological conditions are given high quality care at every stage of these debilitating illnesses."

MND is a fatal, rapidly progressing disease that can leave people locked in a failing body, unable to move, talk and eventually breath. 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 this contributes to many people with the disease not receiving the care and support they need. The MND charter was launched to change this.

For further information please visit www.mndassociation.org/mndcharter

Last updated: 9 February 2017 | Last reviewed: 9 February 2017

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