In November 2014 Help for Health made a donation towards support for those living with motor neurone disease (MND) in East Yorkshire and Northern Lincolnshire. MND is a progressive disease that attacks nerves in the brain and spinal cord that control movement. People can still think and feel but their muscles refuse to work. It affects how people walk, talk, eat, drink and breathe.
Motor neurone disease (MND) is a fatal, rapidly progressing disease that affects the brain and spinal cord. It attacks the nerves that control movement so muscles no longer work. It can leave people locked in a failing body, unable to move, talk and eventually breathe. Some people may experience changes in thinking and behaviour, with a proportion experiencing a rare form of dementia.
MND affects up to 5,000 adults in the UK at any one time. Tragically a third of people with MND will die within a year of diagnosis and more than half within two years. There is no cure.
Founded in 1979 by a group of volunteers, the MND Association is the only national charity in England, Wales and Northern Ireland focused on MND care, research and campaigning.
Volunteer Association Visitors (AVs) are able to provide on-going help and support to families affected by MND including:
• Regular contact and emotional support by phone, email or home visits
• Information and support on managing the condition, specialist equipment, respite, benefits and end of life palliative care options
• Ensuring people have access to our other services – for example our comprehensive range of information materials for people with MND, our dedicated information for carers and our equipment loan scheme and financial support
• Provide practical and emotional support to carers, both whilst they are caring and following bereavement
• Discussing problems as they arise and explaining how these might be managed, outlining the sorts of options available and how to access these
• Linking people into their local self help support branch or group to reduce isolation
• Helping people access statutory support services more quickly
Many people living with MND and their carers face a whole range of emotions from shock, denial, anger, anxiety and fear, frustration and loneliness. AVs are able to help by providing a listening ear, a shoulder to cry on and the sense that the person living with MND and their carer are not alone.
“When you find yourself in a situation like this, the support becomes invaluable. My Association Visitor is just wonderful. I’m so grateful that she’s here and view her as a very good friend now”
Association Visitor support in Hull, East Yorkshire, North and North East Lincolnshire
We currently have five AVs providing support to 16 people with MND and their carers in this area. Families receive a visit each week, or less frequently, for as long as the family wishes to receive support. The support we provide is adapted to the individual family’s needs and can include telephone or email support.
Our AVs in this area are very actively involved with the Association. They are also involved in our branches and groups and help run local support groups and afternoon tea sessions for people with MND and their families. In addition to supporting families, they will also often support professional health workers with specific projects, providing specialist insights into the needs of people with MND.
We are very grateful to our volunteers for all the support they provide. We therefore really appreciate the donation provided by Help for Health to help ensure that we as an Association can support our volunteers and provide the resources they need too.
All our volunteers receive regular supervision from our network of Regional Care Development Advisors (RCDAs), all of whom are experienced professionals within the health and social care field. New volunteers receive one to one support meetings, whilst group meetings are held for experienced AVs. These take place in Hull or in North Yorkshire, where AVs from Hull, East Yorkshire and North Lincolnshire meet AVs from Yorkshire and Middlesbrough. They provide opportunities to share information and support each other as well as allowing the RCDA to provide information and updates.
We also hold annual development days across the country, featuring expert external speakers. These provide the opportunity for more training and peer to peer support. In 2015 AVs in East Yorkshire and North Lincolnshire could choose to attend either the North East Development Day or the Wakefield Development Day. The North East Development Day took place in September 2015 and focused upon ‘Leaving a Legacy’, looking at how AVs can support people with MND to leave lasting and meaningful memories for those left behind. It featured speakers from a number of hospices including Dove House Hospice in Hull. The Wakefield Development Day took place at the end of October 2015 and looked at compassion fatigue, to help support AVs in looking after their own health. It featured an international speaker and expert in the field. Information was also provided on advance care planning, to help AVs undertaking these difficult conversations.
Support for people with MND in Hull, East Yorkshire and North Lincolnshire
Our volunteer AV support makes a very big difference to people with MND, their families and carers in this area. As well as practical help, for example providing information on appropriate equipment and contacting care professionals, they can provide emotional support which helps to improve quality of life.
Within one family there can be very different viewpoints on how to cope with the disease between the person living with MND, their spouse and their children. The nature of relationships might change as, in most cases, one partner has to adjust and cope with the demands of being a full time carer. An AV can use their professional skills and experience with MND to bring families together to look at ways of coping. For others, AVs may meet with a person with MND, or a carer, individually for a coffee, to help ease the isolation that the disease can bring and provide some sense of normality.
The AV service we provide in East Yorkshire and North Lincolnshire is part of a national network of almost 300 AVs. During 2015, the Institute of Volunteering Research and the Charities Evaluation Service was commissioned to undertake a national evaluation and assess the effectiveness of the network and its impact.
The evaluation included a survey of people with MND (both with and without an AV), a survey with carers (both with and without an AV) as well as specific surveys with AVs and staff. Interviews were also undertaken with people with MND, carers, staff and healthcare professionals as well as focus groups with AVs. The evaluation showed that:
• 97% of people with MND stated that having an AV helped them gain a greater awareness of local support
• 90% stated that having an AV helped them to access information about their condition
• 92% strongly agreed or agreed with the statement that having an AV helped them to feel more supported and 90% felt less isolated
• 89% of carers agreed, or strongly agreed with the statement that having an AV had helped them share information and experiences with someone who understands.
AVs themselves viewed the role positively with 95% feeling supported by their RCDA and 98% by the MND Connect Helpline, our national helpline for people with MND, staff, volunteers and health care professionals.