Norfolk Local Involvement Network (LINk) was set up in March 2008 to give people a say in how health and social care services are delivered.
It has since completed a number of successful projects, one of which has been to bring about change in the way that services for people with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) are planned and delivered.
ME/CFS can be a very distressing condition. Its symptoms include muscle and joint pain, and severe mental and physical exhaustion.
When Tina Walton, Norfolk LINk host manager, attended a Great Yarmouth Health Overview and Scrutiny Committee in August 2008, she discovered that the needs of people with ME/CFS were not being fully met in Norfolk.
During the event Tina met several people with the condition who felt that their views were not being listened to. Some believed that there was a lack of services for ME/CFS patients and that primary care trusts (PCTs) were changing services without asking the public for their views.
Tina said, “Perhaps the professionals did not take ME/CFS seriously enough. I felt this was unfair. After the committee meeting I chatted to patients and explained how Norfolk LINk could help them to get their voices heard”.
Following the feedback, a Norfolk LINk ME/CFS group was created to ensure that those developing the services were aware of the views and needs of the group's members. Norfolk LINk provided some hands-on assistance and helped members of the group to present their views to the local council’s Health Overview and Scrutiny Committee and at local service development meetings.
These negotiations have had a real impact and the LINk group has achieved a very positive outcome. An extra consultant has now been promised and will be in place from spring 2010.
One of the Norfolk LINk ME/CFS group members commented, “Norfolk LINk is delighted with the outcome and will continue to work closely with the PCTs to ensure that local services meet the needs of people with ME/CFS. The PCTs are now investigating the time it takes to travel to services, which has also been raised by the LINk group”.
This project is just one example of how Norfolk LINk is influencing local services. It has also been looking into more inclusive and effective discharge procedures, the appropriateness of drug and alcohol services, and reviewing and helping to redesign day services for older people with mental health issues.
Tina Walton stresses the importance of the LINk. “Norfolk LINk is more than just a talking shop. It has real powers to help make change happen and influence health and social care services for the benefit of the people of Norfolk. It gives them a real voice in the commissioning and development of services while working in partnership with local health and social care providers.”
