Reading & West Berks MND Association

LEAFLETS

1. UNDERSTANDING MY NEEDS – personalised leaflet for use when meeting professionals, which holds key information about Plwmnd.

This unique leaflet produced by the Stockport MND Support Group, has proven so successful the Neurological Alliance is basing its own new publication on it. The leaflet has been developed as the result of a partnership between the Stockport Motor Neurone Disease (MND) Support Group and the Stockport NHS Foundation Trust. RCDA Pat Ridgeway said: “We are proud of this pioneering project which we are sure will lead the way in improving the experience of people living with MND nationwide.”

Understanding My Needs has been designed to explain the symptoms of MND and how it affects individuals. Pat said: “We listened to people living with MND attending our support meetings and realised the difficulties that they encountered when admitted to hospital - often for something unrelated to MND – and meeting professionals for the first time who knew little about MND. “The symptoms of MND can be complex, unpredictable and vary from person to person. This combination of factors can create challenges for everyone – people with MND, their carers and also the staff involved in their care who may know little about MND. We shared our concerns with the PALS manager from the Trust who put us in touch with the Assistant Director of Nursing who is the lead for Public and Patient Involvement. She gave us every encouragement and support to produce a leaflet that could be personalised to hold all the key information about a person with MND.”

Local experts were invited to form a Project Group which started by collecting everything ever printed for use in a similar way and spent time listening to the experiences of people living with MND. The group then pulled together all this information and produced a pilot leaflet which was widely circulated and everyone was encouraged to return their evaluations, comments, and suggestions. The group was delighted to find news of the leaflet had spread and received encouragement and support from around the country – from Branches, people living with MND and from Health and Social Care Professionals. An explanatory leaflet was added and the Understanding My Needs was born!

Copies are available from MND Connect on 08457 626262 or mndconnect@mndassociation.org