Uncharted territory
Motor Neurone Disease (MND) affects around 5,000 people a year. People with MND, their carers and families will require a wide range of support – from practical (e.g. personal care, help at home, specialist equipment) to emotional and psychological, as well as help to access social and leisure activities. This help will come from across the health and care systems, from private providers and the voluntary sector, and vary from one area to another.
More generally, there is very often a lack of information about what services are available. During the – often short – course of this devastating illness (half die within 14 months of diagnosis) people will typically require access to 18 different professionals.
Demos is conducting an independent evaluation of an innovative two-year pilot from the Motor Neurone Disease Association designed to address the problem of this complex support landscape. The Volunteering Fund Project will see Volunteer Care Services Navigators working directly with people affected by MND. They will play a key role in:
- Increasing awareness and uptake of personal health budgets/ direct payments
- Helping individuals understand and use personal budgets and exercise choice when accessing services
- Empowering people living with MND to become involved in care decisions and service design, to ensure they meet the specialist and complex needs of people with MND
- Supporting carers to recognise signs of breakdown and ensure that they are supported to care for as long as they feel able
- Creating new ways of providing information using combinations of approaches and methods, including digital tools
- Providing a source of knowledge for new commissioners and a link to hard to reach, vulnerable groups so they can meet their specialist needs and avoid crisis
Alongside this, the Volunteering Fund Project will explore the use of new technologies as a way of providing accessible information to people affected by MND through an interactive, web-based portal, designed in consultation with those affected by MND. Professionals will also be enabled to exchange and share their expertise and experiences, through a new secure, confidential online forum.
Demos will collect quantitative data from the MND Association and partners in health, social care and the voluntary sector, as well as from original surveys of volunteers, people with MND, their families and carers, and practitioners. Using this, we will evaluate the project on a range of outcomes, including:
- Aspects of programme design
- Physical, social and emotional health of people with MND and their families and carers
- Awareness of available services among people with and people affected by MND and professionals
- Changes to the design and commissioning of services accessed by people with and affected by MND
The pilot will take place in the East of England – focusing initially on Cambridgeshire (including Peterborough), Norfolk and Suffolk, and incorporating parts of Essex in the second phase. It and the evaluation are being funded through a £500,000 grant from the Department of Health’s Social Care Volunteering Fund.
In time, the Association expects to use the learning from the pilot to improve support for people with MND throughout England, Wales and Northern Ireland.
For more information on the Demos evaluation of the project please contact Ally Paget: alexandra.paget@demos.co.uk
For more information on MNDA’s Volunteering Fund Project please contact Pauline Matheson: pauline.matheson@mndassociation.org