Branch Meetings and Support Meetings
The Branch holds regular Branch meetings at The Ark, Mount Lane, Turners Hill, Crawley RH10 4RA.
Our meetings are very informal and offer a chance to catch up with other members old and new!
There is no need to confirm attendance just turn up! At some meetings we do have speakers.
Please see our Meetings & Events page for further information.
The Ark at Turners Hill
Association Visitors
Association Visitors are volunteers trained to support people living with MND, and their Families. AVs can offer guidance, emotional support and signpost to services.
This is probably the single most important thing those living with MND and their carers believe the Branch does for them – provide an ‘informed friend’ through the Association Visitor (AV) scheme.
The AV can help you navigate the information out there to find what is right and relevant for you, someone for you to offload your worries or frustrations to, help with filling in benefit forms, make financial aid requests to the Committee on your behalf and much more.
The AV is there to know your personal circumstances and situation, which can be difficult for Health & Social Care Professionals to have the time to do. They are someone you can turn to in a difficult situation or to help you have/consider some of the hard decisions that need to be made through your journey with MND. The carers and families are very much at the forefront of the AVs mind because they too experience MND as well as having the physical and emotional strains involved in caring for a loved one.
This service is provided totally free, and to whatever frequency you feel you want. All AVs are well-trained and experienced to ensure you have the best possible service from the Branch.
For more information please contact Chris Sheridan.
MNDA Benefits Helpline
This service is run in partnership with the CAB and they will help with giving you advice and form filling to ensure you do receive the benefits you are entitled to.
Contact them on 08088 010 620.
MND Grants
There are grants available for people living with MND. They are not means tested.
They are as follows:
- Quality of Life
- Equipment
- Carers and Young Persons Grant
- For more information, please contact Chris Sheridan.
Area Support Co-ordinator (ASC)
ASCs provide support, information and guidance to branches and groups and individual volunteers to enable them to increase capacity and develop services locally. They run induction and development workshops, as well as bring groups of volunteers together to network and share best practices. They also develop new volunteering opportunities both for individuals and by the establishment of new groups.
ASCs also work proactively with statutory, voluntary and independent sector providers to promote and influence the provision of timely and equitable access to a co-ordinated network of care for people with MND and their carers that meets our standards of care. They provide support to AVs on an individual and group basis, as well as identifying and delivering development opportunities for AVs.
The Area Support Co-ordinator for our area is Lisa Burnard who can be contacted by telephone on 01604 800611 and by email at lisa.burnard@mndassociation.org. Lisa covers the Sussex area and is able to advise and access services for you provided by the association and branches.
Carers UK
St Peter & St James Hospice
St Catherines Hospice
MND National Website
For more information about MND please visit the national website at www.mndassociation.org.