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 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. This is just some of what we’ve been up recently.

Communication Aids

There is an on-going campaign across the country to secure better service and provision for communication aids. Surrey and Sussex were highlighted as one of the most concerning areas in England with regard to access to Augmentative and Alternative Communication (AAC).  Led by our brilliant Campaign Contact, David Setters, we’ve lobbied local MPs, empowered those MPs to raise concerns to NHS England, given evidence to an All-Party Parliamentary Group before they submitted a report that was discussed in the House of Commons and much more. Progress has been seen with a report presented by NHS England’s office for Surrey, Sussex & Kent in October updating us on the improvements being made.

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.