I have just been to a meeting of the All-Party Parliamentary Group for Patient and Public Involvement in Health, which heard from representatives of the National Association of LINks’ Members.
For those with long memories, each health district used to have a local Community Health Council (CHC) which was there to represent the interests of NHS users in that area (I should declare an interest in that from 1987 to 1998, I was the Director of the Association of CHCs for England and Wales.) In 1999, the Government decided to abolish CHCs on the basis that the reforms then being introduced in the NHS would make separate patients’ representation unnecessary. After a big campaign, the Government conceded that, while CHCs in England would still be abolished, new structures called Patient and Public Involvement Forums would replace them around the country. These were still finding their feet (and were still in many instances weak and watery substitutes for the old-style CHCs) when their abolition in turn was announced. Again there was a campaign and as a result the Forums did not finally close until the end of March this year. In the Forums’ place were to be new structures to be called Local Involvement Networks (LINks). These would be funded via a Department of Health allocation to the local authorities in their areas. The local authorities would then contract with another organisation to “host” the LINk for the area.
Inevitably, the new arrangements took some time to be set up and the Department of Health has acknowleded that they will not really be ready to operate until next year – leaving a gap of nine months to a year when there will have been no formal mechanism for patient representation in place.
The evidence from the National Association of LINks’ Members (an informal grouping of individuals who were involved in the Forums and want to see the new system work as well as it can) is that there are huge variations around the country in what has been done to get LINks up and running. As indicated above, the process is a convoluted one: local councils receive an allocation for this work and must appoint a “host” organisation to run the local network. According to the Association, some local authorities have retained substantial sums for “administration” and have not passed all of the allocation on to the “hosts”. There is in most parts of the country a lack of clarity about what the “hosts” will provide for their allocation of money (what guidelines there are from the Department of Health are very permissive to allow local variation). The Association feel that some “hosts” see their role as a money-making venture for their organisations (and in a number of instances have bidded to act as “hosts” in several local authority areas) and that often only limited resources have been made available to support the local volunteers who are trying to act as patient representatives and visit/inspect healthcare establishments.
All in all the Association presented a picture of precisely the sort of chaos that was predicted when the legislation went through Parliament.