Notes from the field of public involvement

Wednesday, 26 July 2006

A voice to go with choice - make sure it's strong and heard this time

Health and social care covered, but not complaints

Government has published its blueprint for public involvement following the long-trailed disbandment of Patients Forums and also the expert advice given to Ministers following the review of patient and public involvement led by Harry Cayton and Ed Mayo. Called A Stronger Local Voice, the new PPI vision scores an early goal by announcing - at long last - that the stronger local voice of the proposed Local Involvement Networks (LINks) will cover health and social care services.  Hurrah for a common sense policy that should have happened years ago.  But will there be a consequential merger of local authority Health and Social Services OSCs to reflect this approach?  Councils should be encouraged to see this as common sense too.  After all, LINks will have much closer official relationships with OSCs in these plans: formally referring matters to them and perhaps even sitting with councillors as lay advisers or assessors.  That is something MAC has long advocated and it would be wasteful to have to do this for two separate OSCs.

The document also confirms that CPPIH will be abolished along with the Patients Forums.  In their place, LINks will cover geographical areas corresponding to local authorities with social services responsibilities.  That will considerably reduce their number compared with the present instutution-focused Forums and be a welcome reduction in duplicated effort.  However ICAS and PALS will remain separate functions from LINks.

This is a lost opportunity to integrate complaints and redress functions across health and social care to reflect the coming merger of the Healthcare Commission and CSCI and, more importantly, the way people experience these related services.  From a consumer standpoint, the disjointed nature of complaints processes in health and social care was never justified. Though LINks won't handle complaints, presumably they can collect data on that as well as gathering information on local health care needs. This is the market intelligence model of public involvement bodies - the collector and analyser of information which is then passed on as recommendations to the powers that be. LINks would be ideally placed to help steer users and carers through a unified health and social care system, including complaints.  They should aspire to this in coming years.

Clarity of establishment and governance needed

How LINks will be established and supported is rather cryptic in Stronger Local Voice.  While no one wants a repeat of the shortcomings of many of the Forum Support Organisations, neither should local authorities be naively entrusted with these resources.  The local authority role should be to run a wide ranging and open consultation to identify the body most suited to develop the LINk, recruit and support its members and enable them to be effective.  And LINks should hold their own budget and decide their own staffing if we don't want a repeat of major weaknesses of the present system.  Promised guidance and a model contract may make this clearer.  Local authorities can be conduits for cash for LINks, but it should not stick to the sides before it gets to its destination.

What kind of bodies will LINks be in governance terms?   The document speaks of some "statutory functions" but does not describe the networks as statutory bodies (as CHCs and then Patients Forums were). This will need clarification, especially as LINks members could be both local voluntary organisations - some of whom may be health or social care service providers -  and interested individuals.

If it is going to be heard and be seen to make a difference by generating evidence of its effectiveness, there are two key relationships to be developed and sustained: 1) with the Oversight and Scrutiny Committees and 2) with commissioners of health and social care. The first will be the advocacy platform to make a fuss and enlist political support. The relationship with the commissioners, however, will be different and we think more important, because it is much more focused on action, change and getting services right for local people.  It is local people who pay for health and social care, so their voice in the commissioning and delivery process must be strong to be heard.  That is the challenge for LINks.

Supply and demand management challenges

One of the things that LINks will have to grapple with is the service change implications of supply and demand management as PCT and PbC commissioners wrestle with balancing their (reducing from 2008) budgets while focusing on obtaining appropriate, effective and safe services. The promised clarification in Stronger Local Voice about Section 11 duties - expanded to include responding to public views - should get a good workout from this.  The Chief Medical Officer's recently published report on the public health in England for 2005 has an instructive chapter "Waste Not, Want Not" on curtailing ineffective treatments.  No one should oppose the PCTs' objective of being effective commissioners if that means stopping ineffective procedures which also carry risks for patients.  But the issue which has to be addressed first is communications and persuasion - for health care professionals as well as for potential patients. If rationing healthcare has good reasons, then the public must be informed and invited to discuss the issues, otherwise the debate will become emotive and contentious.  We do not need another "War of Jennifer's Ear" over grommets circa 2007/8.

Primary care professionals as well as patients and the public will need well-marshalled facts and good communication if they are to accept that some things will not - and should not - be available in future within the NHS.  As Prof Archie Cochrane said back in the '30s, it is not so much that all care should be free, but that all effective care should be free. Not referring for ineffective treatments in the first place will become a useful tool for commissioners and potential primary care referrers seeking to meet the 2008 target of 18 weeks between referral and commencement of treatment.  Finding a way through this while stimulating and supporting wider patient and public involvement will test the mettle of the new LINks.  We wish them well (assuming always that parliamentary time can be found to bring about their birth).

Ease of use needed

It is an abiding paradox that the individual quickly disappears in the discussion of organisational form and purpose. One way perhaps to counter this is to add to the four principles of independence and engagement, accountability and transparency the principle of what we might call 'ease of use'.  This will be highly relevant to LINks.

M-A-C has just done some work with Quality Improvement Scotland on what they call "Patient Focus and Public Involvement" which is being embraced enthusiastically across the board in the public services. Here we have seen again how easy it is to make life hard for the individual or the small organisation who wants to make a contribution with all the usual administrative assault of rushed consultations, unrealistic timescales, and inappropriate demands on volunteer networks. Professionals must avoid both patronising and overestimating the capacity of lay networks.  The latter is more dangerous as it leads to a culture of disappointment and failure expectation.

Consultation response invited

Stronger Local Voice is a consultation document, so what do you think?  Five questions are posed at the end of the 25 page document on which the DH PPI Team would like views by 7th of September.  M-A-C will be submitting ours and posting them on this blog. If you would like us to host your responses here, let us have a copy.

A Stronger Local Voice: www.dh.gov.uk/assetRoot/04/13/70/41/04137041.pdf

Review of Patient and Public Involvement: Recommendations to Ministers from the Expert Panel: www.dh.gov.uk/assetRoot/04/13/70/42/04137042.pdf

"Waste Not, Want Not" chapter from CMO's report 2005: www.dh.gov.uk/assetRoot/04/13/73/69/04137369.pdf

Andrew Craig | Send feedback