Campaigns Contact
As well as providing support, campaigning is an important part of the Branch’s activities. These are led by our Campaign Contact David Setters. David was diagnosed with MND in September 2012. He has kept himself busy doing what he calls ‘work replacement therapy’ by campaigning, fundraising and awareness raising locally and nationally supported by his wife, Helen, family and friends.
David tries to keep abreast of issues affecting people living with MND and their families at a national and local level. While much of this information comes through Association staff, he is also keen to hear from patients, carers and volunteers across the area covered by the branch as to any shortcomings in health and social care services. When common themes are identified, he will work with Association care and campaigns staff to address such issues, by making representations to national/local politicians as well as executives in the health and social services. Please feel free to contact David via email at davidsetters@hotmail.com if you need any further information.
MND is a relatively rare illness, so raising awareness, ensuring the quality of care and the specific requirements of MND is fundamental.
Many of the campaigns are led by National Office, but with services, care and support varying so much by region and county, there are local campaigns we need to take on too.
Branch Campaigns Contact David Setters with wife Helen
MND Charter
Between June 2012 and May 2015, all Branches up and down the country promoted the MND Charter. The Charter set out commitments and rights for those with MND and their carers to help overcome problems with the timely access of services. By collecting over 33,000 signatures nationwide we were able to raise awareness and lobby the government, and now Councils to adopt and take on these commitments.
The MND Charter was adopted by West Sussex County Council at a ceremony in the Council offices in Chichester in September 2018. By signing the Charter it will actively strive to ensure its services are fully compliant for the needs of those living with MND and their carers.
Key to the follow-up from the Charter adoption is the development of relationships between our staff and volunteers and health and social care professionals throughout West Sussex. Through partnership we aim to identify and improve on shortcomings in services, highlight ‘best practice’ and, where appropriate, promote a greater understanding and knowledge of MND for the benefit of patients and their carers. At present, the team is working hard to improve access to respiratory services which can currently mean long trips to specialist centres.
You can read the MND Charter at www.mndcharter.org.
West Sussex Council adopts the MND Charter