Suffolk County Council continues to raise awareness of motor neurone disease to support those living with the condition


Suffolk County Council reiterated its support of the motor neurone disease (MND) charter at July’s Suffolk Health and Wellbeing Board Meeting,

MND Association and Suffolk County Council membersThe MND charter is in support of local people living with this terminal disease and their carers.

At the meeting, both Beccy Hopfensperger, Suffolk County Council’s Cabinet Member for Adult Care, and Tony Goldson, Suffolk County Council’s Cabinet Member for Health and Chair of the Health and Wellbeing Board, reiterated their support for the charter and asked the board for their support in increasing awareness of this disease.

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.

Little is understood about the disease and this contributes to many people not receiving the care and support they need. The MND Charter was launched to change this, comprising a number of rights for those with MND.

Suffolk County Council, who committed to the charter in December after all councillors voted unanimously in favour of supporting it, is one of only 14 county councils to adopt the charter. As part of the charter, Suffolk County Council will promote the charter, campaigning to recruit volunteers to help support people affected by MND.

Councillor Tony Goldson, Suffolk County Council’s Cabinet Member for Health and chair of the Health and Wellbeing Board, said:

“I am delighted the council has expressed its continuing support for those with MND and those caring for them.

“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.”

Councillor Beccy Hopfensperger, Suffolk County Council’s Cabinet Member for Adult Care, 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.

“It was great to further underline the council’s support at the latest Health and Wellbeing Board meeting and increase awareness of the disease.”

Liz Cooper from the MND Association said:

“I was delighted Suffolk decided to adopt the MND Charter in December 2016, and am really pleased to have had the chance to talk about its implication at the Health and Wellbeing Board meeting.

“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. A good example of this is Linda Tipper, a Lowestoft resident who is living with MND, who originally approached her councillor about adopting the Charter and kicked this whole process off. 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.”

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