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Suffolk County Council follows through on pledge to up support for motor neurone disease patients

PUBLISHED: 11:23 17 July 2017

From left; Liz Cooper from the MND Association, Cllr Beccy Hopfensperger, Suffolk County Council's Cabinet Member for Adult Care, Cllr Tony Goldson, Suffolk County Council's Cabinet Member for Health and Chair of the Suffolk Health and Wellbeing Board, Penny Bentley, carer of someone with MND, Terry Roberts, Mike Hennessey, Suffolk County Council's Director of Adult and Community Services, Sue Cook, Suffolk County Council's Director of Health, Wellbeing and Children's Services and Abdul Razaq, Suffolk County Council's Director of Public Health and Protection. Picture: SUFFOLK COUNTY COUNCIL

From left; Liz Cooper from the MND Association, Cllr Beccy Hopfensperger, Suffolk County Council's Cabinet Member for Adult Care, Cllr Tony Goldson, Suffolk County Council's Cabinet Member for Health and Chair of the Suffolk Health and Wellbeing Board, Penny Bentley, carer of someone with MND, Terry Roberts, Mike Hennessey, Suffolk County Council's Director of Adult and Community Services, Sue Cook, Suffolk County Council's Director of Health, Wellbeing and Children's Services and Abdul Razaq, Suffolk County Council's Director of Public Health and Protection. Picture: SUFFOLK COUNTY COUNCIL

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Volunteers will be recruited to help people in Suffolk living with motor neurone disease (MND) and their carers as part a pledge to ramp up support for those affected by the “devastating” disease.

In December 2016, Suffolk County Council (SCC) voted unanimously in favour of adopting a charter created by the MND Association, after Lowestoft woman Linda Tipper, who has the fatal condition, approached her councillor about the issue.

As a result, the authority must work to increase awareness of MND; ensure patients have access to the right care and information to improve their quality of life; and make sure carers are respected and listened to.

At this month’s Suffolk Health and Wellbeing Board meeting, the council reiterated its support of the MND Charter.

Tony Goldson, SCC’s cabinet member for health and chair of the wellbeing board, said: “It is vital more people are aware of the needs of people with MND so those living with this devastating disease can maximise their quality of life and die with dignity.”

SCC’s cabinet member for adult care, Beccy Hopfensperger, said: “Supporting those with MND and their carers is something I feel passionately about and I was delighted to see the council back the supporting of the charter unanimously.”

Liz Cooper, from the MND Association in Suffolk, spoke at the wellbeing board meeting about what had been achieved since SCC signed the charter.

She said: “I highlighted our campaign to secure NHS funding for a specialist nurse for MND and other rare neurologically conditions in the east of the county, as this has been missing for many years. MND is a devastating disease that typically kills people within two – five years, and without a single point of contact to turn to, people can get lost in ‘the system’.

“The MND Association was established by a group of volunteers, and volunteers still play a crucial role in our work today.

“We’re actively recruiting new volunteers across Suffolk at the moment, and would urge residents who might be interested in helping us to reach more people living with MND and their carers locally to get in touch.”

For more information about getting involved, see here.

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