From 1 April 2013 to 31 March 2016 the Motor Neurone Disease (MND) Association is running a pilot project in the East of England which aims to empower people to take control of decisions about care and make choices about services.
The project, which is funded by the Department of Health through the Health and Social Care Volunteering Fund, has recruited and trained 8 volunteer Care Services Navigators (CSNs). CSNs support people with MND to understand and use health, social care and third sector services. CSNs build up and maintain knowledge of local health and social care organisations and empower people affected by MND to engage with these organisations to ensure services are designed to meet their individual needs.
CSNs also play an important role in supporting carers. They are trained to recognise signs of breakdown and ensure that carers are supported to care for as long as possible, including by promoting carers assessments and signposting to carers organisations.
While it is not in the CSNs remit to directly influence services and commissioning, the knowledge they develop is shared with commissioners to help shape future services. The CSNswork navigating people through the system has also begun to highlight issues that can be taken forward by the MND Association’s campaigns team.
The information and experience that CSNs feedback to the Association is valuable in developing specialist training, education and information for health and social care professionals. It also helps the Association in achieving its strategic goal of supporting people with MND to get the best out of personal budgets and other initiatives developing from the growing personalisation agenda: particularly timely as personal health budgets have become more widely available to NHS patients from 2014.
By using technology more effectively the project has created a new way of providing accessible information to people affected by MND through an interactive Service Directory. The directory is based on the ‘Living with MND guide’ produced by the Association and provides a wealth of information on health and social care services in Peterborough, Cambridgeshire, Norfolk, Suffolk and West Essex. The directory can be accessed at www.mndsupport.org.
The MND Association chose the East of England as the pilot area for the project as there was evidence that improved collaboration and information between services would benefit people with MND. There is a well established Care Centre and some parts of the project area are rural and there is a difficulty in accessing services as a result.
In addition to supporting the Association’s own strategic goals, as outline above, the project secured Department of Health funding as the model supports its Vision for Volunteering by testing the strategic involvement of volunteers in the new delivery structures to provide services and support that complements statutory services and will clearly demonstrate the value and impact of volunteering.
The research organisation Demos is undertaking an independent evaluation of the project. Initial feedback from the year one and two reports suggests that the CSN role is having a positive impact. The year two report highlights that those who have seen a CSN are more likely to report a good or very good quality of service from equipment loans, dietitians, orthotics and wheelchair services, among others, and less likely to have had a good experience with a MND Connect, specialist MND or neurological nurses, or a hospice.
One couple who had had ongoing support from a CSN described her support in this way:
[X] was our navigator and she was brilliant. The navigator role within the MNDA I think is one that is… Because of when they come in you’re… to begin with, you’re right at the beginning of your journey; not only are you dealing with the shell shock but you suddenly find that your whole life path has changed, and there are so many things that you have to think about that you don’t realise you have to think about. Participant 1
[The CSN]’s been responsible for [the first piece of equipment that Y needed, which was a] reclining chair. She’s also helped for funding with our Closomat [specialist toilet] for the wet-room. [Before the CSN’s help], the experiences there, they [were] horrendous. The social services said, ‘No, you can’t have a… we can’t give you a grant for this.’ Participant 2