Patient Voice?

Community Health Councils  were set up in England and Wales in1974 when  community  health services were moved from local authorities into the NHS.  During the 29 years of their existence they developed  confidence in challenging the NHS locally and nationally. An official national Association of CHCs in England and Wales was established with funding which provided legal advice, training and support, and perhaps most important, leadership. The staff were employed by Regional Health Authorities and many developed considerable expertise. RHAs generally did not interfere with the running of CHCs, even though some of them clearly annoyed local NHS managers – and doctors – as one of their jobs was to support people with the complaints procedure.

The main work of CHCs was in challenging local NHS decisions, especially relating to “substantial variations” in the provision of services, and in inspecting services, as they had the right of entry to NHS premises.

Doctors Private Quarters
Doctors Private Quarters

The best publicised campaign CHCs ran was called Casualty Watch. Southwark CHC started visiting Kings College Hospital casualty department on the first Monday evening of the month and issuing a press release on Tuesday morning telling the stories of the people they found waiting there. The campaign eventually covered the whole country and was full of stories like the 80 year old man who waited 120 hours at the Royal Free Hospital. By the time of the last national exercise in 2001 187 casualty departments were visited, the CHCs were working with the Royal College of Nursing and they were generating a lot of publicity.  Local papers loved it and it seems pretty clear that it was because of this that the 4 hour target was imposed on casualty departments.

In 2003 Community Health Councils were abolished as part of the NHS Plan – the only part subject to no consultation or public involvement. No explanation was forthcoming, but those involved assumed they had become too much of a nuisance. The gap between abolition and establishing new organisations conveniently prevented any of the staff, some of whom had become quite expert,  having a claim on a job in the new structure.

In 2003/4 CHCs were replaced by patient and public involvement forums – one for every NHS Trust. Instead of having their own permanent staff the forums were supported by local host organisations – mostly voluntary organisations – on short term contracts.  There was a national body, the Commission for Public and Patient Involvement in Health, (CIPPIH) which appointed the members and attempted to police the system. The forums were pretty well strangled at birth, as it was announced in July 2004 that they would be abolished by 2008. Most were small and ineffective, but they weren’t around long enough to develop any strength. The Patient Forum in Mid-Staffordshire was worse than ineffective. In January 2006 one of its members produced  a report on the shocking state of the casualty department, but the Patient Forum refused to pass it on to the hospital. When he gave his report to the local paper they expelled him. Many of the Forum members went on to take non-executive positions in the NHS.

From 2003 local councils were required to establish Health Scrutiny Committees with powers to call NHS organisations in front of them. Some did excellent work, often across institutional boundaries and with a public health perspective, but many were under-resourced and lacked expertise in health issues.

In 2008 the Forums were abolished and replaced by Local Involvement Networks – run on similar lines with a host organisation with a 3 year contract providing the staff. Unlike the Forums, the LINKs related to a local authority area, not an institution and for the first time were expected to cover social care.  That was a quite a shock and many LINKs concentrated on social care as a new and challenging area. Links were entitled  to “Enter and View” premises where NHS or social care services were provided. They had no national or regional structure.  An unofficial structure was set up – the National Association of Links Members which helped to keep people in touch  – but it never had any official recognition.  So there was no national leadership  and LINks consequently lacked direction and were allowed to drift  depending on who was involved. The task of monitoring the whole health and care system was, in any case, beyond the resources at their disposal. They were supposed to involve organisations as well as individuals, but the big health charities didn’t see them as offering anything they couldn’t do perfectly well on their own.

Alongside these structures NHS Trusts were being turned into Foundation Trusts, the idea being that they would be independent organisations operating in a competitive market. They have members, (self-selected) who elect the Governors of the Trusts. This was a new departure for the NHS, and most of the Trusts didn’t  know what to do with them. Some tried to recruit large numbers of members, until they realised that servicing them cost about £9 a year each.  Most were very wary of letting the governors interfere.  As far as many Trusts are concerned Governors are an ornamental part of the constitution, to be taken out on festival days  and introduced to visitors, but to be kept away from the operational parts of the organisation.  Most of the Governors see their role as similar to that of the Friends of the Hospital. They generally don’t know much that the management doesn’t tell them so the idea that they hold the board to account is seldom a reality. Their role is further weakened by all the other bodies that hold the board to account. In places where Governors make a real contribution it’s usually because the Chair of the Trust, who also chairs the Governors,  takes a positive view.  If something goes seriously wrong the Governors are generally reduced to the role of spectators while Monitor, or some other regulator, intervenes long before they can act.

In Mid-Staffordshire as far as Cure the NHS were concerned none of the involvement structures – Patient Forums, Local Involvement Networks ,  Foundation Trust Governors  or even the Trust Board – seem to have had any credibility.  Julie Bailey and her associates treated  them with contempt.

On April 1st LINKs are to be replaced by ‘Healthwatch’. In many ways quite similar in that they relate to a local area. Each of 152 local authorities has to commission fund, and performance manage its Healthwatch, and generally this means a 3 year contract with a voluntary organisation to set it up, though 7 are run by social enterprises set up by commercial organisations. The remit is a bit wider than LINKs, as Healthwatch has a role in advising patients about services and complaining. They will still be allowed to “Enter and View” premises where NHS or social care services are provided. Funding is tighter and not ring fenced. And local Healthwatches will be organisations in their own right with the power to employ staff, where LINKs were just run by their “host” organisation. Healthwatch gets a seat at the new Health and Wellbeing Board to be set up by each local authority, and that may create its own problems as the Boards grapple with unpopular reconfigurations. They will also be represented at the NHS Commissioning Board’s Local Area Team’s Quality Surveillance Groups. But there will be no common pattern of organisation. Just as with LINKs, each area will be different.

There is a national organisation – National Healthwatch “hosted” by the Care Quality Commission, and among other things it will do some national advertising, as CIPPIH did, to promote the “brand”

The Healthwatch regulations provide that they are not allowed to promote or oppose changes in “the policy adopted by any governmental or public authority in relation to any matter”.   Norman Lamb, the Minister,  says that “to be effective, Local Health Watch should speak out for their local communities, ensure their campaigning work is evidence based and that they are not captured by political parties or other organisations.” He has said that as a lawyer he agreed that the wording of regulations could be improved but felt that they allowed for campaigning and confirmed that the government wants LHW to campaign. He added that most community organisations would look to guidance rather than statutory regulations and suggested that LHW could use Judicial Review against local authorities which try to stop campaigning.

It seems very clear that the organisations which get the Healthwatch contracts will feel very vulnerable to accusations that they are “campaigning”.  Each successive iteration of the PPI structure ends up more timid than the one before it, and this appears to be the going down the same road.

It’s well established that reorganizations set back progress.  That is even more true of voluntary organisations. It will be difficult to persuade the population that Healthwatch is worth the investment of their time and energy.

For people who want to get involved in the NHS there are other opportunities. Clinical Commissioning Groups are required to establish public and patient involvement structures, and at present the signs are that they are much more interested in listening to the public than PCTs were in their later years.  There are financial incentives for GPs to set up patient participation groups, and some of them are quite active, though many GPs are very wary of them.  In the new more chaotic NHS structures and informal arrangements are springing up that have been variably. They may do more than the statutory arrangements. It will deeply ironic if the new competitive ethos in the NHS leads to a market in active patients with many organisations bidding for their time