Greater Manchester Neurological Alliance A

GREATER MANCHESTER NEUROLOGICAL ALLIANCE A.G.M

The neurological alliance consists of message is that preparation is a key element if representatives of support groups for people who you are to be successful as are leadership skills suffer from neurological conditions. Some of and relationships. She also said it is vital to give the representatives are themselves sufferers or feedback to all that have helped in any carers and some are professionals who work for campaigning. the nation charities e.g. MS. Then there was a very interesting presentation by These representatives meet with managers of the Alan Campbell, Director of Strategic neuroscience centre at Hope Hospital in the hope Commissioning for Salford Primary Care Trust. improving service and understanding on both He spoke about user/carer involvement in sides. purchaser decisions. He told us how important he feels it is to get user/carer views on the On Thursday 22nd May, a meeting was held services which are to be commissioned because which was entitled Creating Links, with the aim then the services will be more relevant and user of strengthening the links between service friendly and will develop better. providers and service users. Next was Simon Wright, General Manager of The evening started with a lovely buffet and a Neurosciences, Hope Hospital, talking about chance to look at the displays put out by many of user/carer involvement in hospital service the groups, including our own ME display board. decisions. He explained how the hospital looks at its priorities and sets its targets and I’m afraid At 6pm, Marie Oxtoby, our Chair opened the he took one or two criticisms from the audience meeting and asked for some of the concerns of at question time. those present and this gave us the opportunity to express our concern that they offer us no co- The last of the professional speakers was Dr ordinated service, although ME is classified by Krystyna Walton, Consultant in Rehabilitation the World Health Organisation as a disease of Medicine from the Floyd Unit at Rochdale. She the nervous system. told us of the variability of the service provision across Greater Manchester, with some areas Maureen Kelly, chair of the National having Community Rehabilitation Teams and Neurological Alliance, then spoke about ‘why’ others not. She also stressed the difficulty and we need links and said that firstly we need links frustrations around the delays in movement of because ‘we have to’. That is because patients in acute rehabilitation, after say an government now requires all service providers to accident, surgery or stroke, unable to be moved discuss and seek the views of the service users. on to intermediate or community care and so She said also that it is a good idea because may be forced to stay inappropriately in a everybody wins, the service provider gets to hospital bed for many months. know that its service is useful and acceptable and often gets good ideas from service users. Lastly Pat Ridgeway, one of the Executive Patients and carers are experts in the condition Members of the Neurological Alliance gave a and their knowledge is valuable. short presentation of the value of us all working together. Then Elaine Willis a Health Care Consultant spoke about ‘how’ to create links and she said We were fortunate enough to have five of us that groups must present everyone’s view fairly, there to represent our group, and present our everyone’s view is valid and all should be concerns and make our comments on our respected and listened to. She said our complete lack of any service from the involvement has to be about ‘real things’ and Neuroscience Centre, and I hope that we can that involvement is a partnership between continue to press the views and need for service. service provider and service user. A vital Pam Turner