Volunteers’ Week 2022

People with MND, their families and carers are at the heart of everything we do.

Before joining the MND Association, Susie worked as a palliative care social worker in London. Upon retirement, and to our good fortune, Susie decided to share her skills with us as an Association Visitor (AV) for the North London Branch.

Susie has been volunteering with the branch for the last seven years providing invaluable support to people living with MND and their families with calm empathy. Susie also works with new AVs to help them fit into their role and empower them with confidence and tenacity.

We collaborate, and value everyone’s contribution.

Branches across Kent work together across branch boundaries to support each other, share ideas, and plan county wide events and activities. There are three branches and one group in total that cover Kent. These are:

• East Kent Group
• Mid Kent Branch
• West Kent Branch
• North West Kent Branch

Every member of the volunteer team across all branches goes above and beyond to ensure people with MND, their loved ones, and carers are supported. A great example of collaborative team working both within each branch, across branch boundaries, and with local professionals.
 

Back row left to right: Jean and Reay (West Kent), Mark (North West Kent), Maureen (North West Kent).

Front row left to right: Chrissie and David (East Kent), Judy (East Kent), Wendy and Sheila (in blue MND shirts, Mid-Kent).

We achieve our aims through building open and transparent relationships.

Sue Heal

Sue has been volunteering with the Norfolk, Norwich and Waveney Branch since 2012. She is an integral part of the branch and relentlessly engages with many different MPs and councillors across her region on a number of the Association's campaigns. She frequently shares campaign updates, as well as her campaigning knowledge among branch members. Sue is also the newsletter editor, webmaster, and campaigns contact for the branch. Sue commended her fellow branch members when she said "None of this is possible without the support of the terrific volunteers in the branch. We work well as a team providing friendship and support to each other."

Back row left to right: Sue, Anne Gillett, Judy Burns-Thompson. Front row: Malcolm Chubbock - branch chair for 27 years.

Joan Randell

Joan has volunteered for many years and is, in the words of Area Support Co-ordinator Anne Anderson, "a fountain of knowledge". Joan has built and maintained strong relationships with those she supports, their families and carers as well as her fellow AVs and the local health teams. These key relationships have helped Joan and the Northamptonshire Branch members provide ongoing help and support to those living with and affected by MND in their local community.

She has been described as 'measured' with a 'great sense of humour and is greatly appreciated by her colleagues.'

We achieve excellence through personal commitment and ongoing improvement.

Diane is still fairly new to the role of Association Visitor. She has been volunteering with the MND Association for approximately 17 months but is personally committed to developing her skills as an AV by regularly going above and beyond. Diane supports Craig, who is living with MND, and excels in providing him with the emotional and some of the practical support he needs. When she initially started her role at the Association, Diane was asked to provide telephone support as Craig lives quite far away, however, this quickly evolved to face-to-face visits. Diane is showing fantastic commitment and dedication to her role and Craig will be the first to admit that she has made a real difference to his quality of life.

We respect and respond to people’s diverse needs, backgrounds and views.

Jo is an AV in the Bedfordshire area who regularly goes out of her way to provide support to those with MND, their families and carers. Jo runs the monthly Carers Meetings, and is a huge part of running the monthly Support Group. As well as identifying any local help and support, she works on fundraising opportunities and attends all branch meetings. Jo keeps in regular contact with the local Specialist Nurse and is always looking for opportunities to enhance the lives of those she supports. Jo's ability to recognise the different needs, backgrounds and views of the people she has built relationships with during her time as an AV is remarkable. Anne Anderson, Jo's Area Support Co-ordinator said "Jo is a lovely person who is always willing to help where she can."

Jo with Martin - Martin was the first person Jo supported in her role as AV.

Caroline has been an AV for over 20 years. One family she visits said she is “a volunteer who is the most remarkable resource. We salute and thank her.” Caroline has helped the family re-schedule various appointments with consultants when the person she was supporting was 'feeling written off and misunderstood' and has provided a myriad of other supportive acts. She helps families find new care agencies when needed and is described as 'always networking, pollinating, fixing, and supporting'. A key part of the work Caroline does is tailoring the support she provides to suit a particular person or family's needs. Each experience is different, and it is the understanding and respect Caroline demonstrates to this fact that makes her such a 'remarkable resource'.

Alison has been volunteering for the North Wiltshire Branch for 14 years! During this time, she has been instrumental in improving services for people living with and affected by MND across the region. Alison's commitment and prowess led the North Wiltshire Group to receive The Queen’s Award for Voluntary Service in 2019 – the highest award given to volunteer groups across the UK! Alison has been described by the people she has supported as an "angel". She is an outstanding volunteer, with limitless kindness, ambition, and dedication to ensure that MND is treatable and ultimately curable.

Everyone gets the care they need when they need it.

Over the past two years, Tracy has volunteered in various ways for the West Yorkshire Branch. During lockdown, she called people living with and affected by MND. And has now started visiting people at home too. Tracy works hard to ensure that everyone gets the care they need, when they need it. She has mentored new Association Visitors, joined bereavement focus groups and befriending services, and even provided education at University of Bradford and Leeds Rhinos Rugby Club!

Lynwen Griffith

Lynwen is an Association Visitor based in North West Wales. Despite working as a community nurse, she also volunteers and directly supports people affected by MND and their families with advice and a chance to chat. Lynwen is also bilingual and has been able to help us support people with Welsh as their first language. She is an asset to the MND Association and helps ensure that everyone affected by MND gets the care they need when they need it.

Every day with MND counts.

Kent and Hetty are both Chair of their local Branches, supporting people with MND in Hertfordshire. Kent is living with MND himself. Jointly they've campaigned and are working together to hold a Hertfordshire wide Walk to D'feet MND. Kent and Hetty’s collaborative working has opened more doors for their Branches. They have pulled on each other’s resources and expertise to expand support and raise awareness, making sure that every day with MND counts.

You are heard.

Janet has volunteered with MND Association since 1984, originally as part of the Suffolk Branch. We want Janet to know that we really value her 38 years of support. Suffolk wouldn't have had such a healthy income over the years without all her behind-the-scenes work.” Janet keeps in contact with people affected by MND and makes sure that they feel heard. She provides invaluable emotional support by listening, comforting and guiding people through their MND journey.

No one faces MND alone.

Marie has volunteered for the MND Association in Northern Ireland for 10 years and has played a vital role in her local community! She has 3 volunteering roles, including being an Association Visitor for 10 families, Branch Secretary and Group Coordinator. She always goes the extra mile! Marie manages our online support groups for people living with and affected by MND who are unable to get to face to face meetings. This helps to reduce social isolation and ensure that no one faces MND alone in Northern Ireland.

Maureen has been volunteering for the MND Association in the Isle of Wight Branch for 17 years. She's a valued asset to the team at Mountbatten Isle of Wight. Maureen meets people living with MND at the hospice and gives them information about the Association and local support. Maureen helps to ensure that no one on the Isle of Wight faces MND alone. She provides home visits, as well as emotional and practical support, such as ensuring they have access to the Wightcare button and stairlift hire. She has made a huge difference.