Huge chaos remains in the arrangements for public and patient involvement in health

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.

2 thoughts on “Huge chaos remains in the arrangements for public and patient involvement in health”

  1. Dear Toby

    I was made aware of your blog diary entry by NALM who you have mentioned in that entry . Yesterday I sent this e-letter copy to NALM and others about LINks concerns and working members not knowing what budget is alocated for realistic patient and public monitoring which directly interfaces with patients .

    “Letter By Email
    To Vicki Fitzgerald
    Gateway Family Services (HOST)
    Copied To Elizabeth Rattlidge et al .

    Date : 9th December 2008

    Resource Anxieties : An Underlying Information Problem

    Dear Vicki et al

    At the last meeting of the Mental Health Working Group (MHWG) 5th December 2008 someone who attended from the interim “LINks” Getting Going Group (GGG) raised a point about the various costs in time and manpower of doing a proposed survey of some Mental Health Users . The MHWG is working toward a working action plan which includes creating a focus group type approach and survey-work but which cannot be actioned until it is endorsed by the Core Links Group which as yet does not exist, but is evolving from the (GGG)

    I believe I am obliged in this letter to demonstrate some real knowledge of the field so I will continue in that vein and then return to the “resource anxieties” raised .

    The MHWG survey of 6 or so questions was proposed by Kate Walker and followed the good practices of PPI that had previously done this kind of exercise in 2004. The survey approach had finally led to independent research well received by the Mental Health Trust. The survey was done Independently by Suresearch (Bham Uni) . The figures of patients involved were 60 + in the first PPI survey and the later Suresearch work involved 63 Users Suresearch also did a secondary analysis of 150 Users . The Interfacing capacity of the initial survey meant the previous PPI met Service Users promoted PPI and “worked at the coalface”. It was good practice and robust monitoring of the patient-perspective and experience . As PPI, and I anticipate LINks, we are supposed to work in an evidenced based way otherwise we are open to accusations of being opinionated, and previous experience suggests to me, that may be used against us . The Health Care Commission-returns from our MH PPI were “evidence based” (not opinion based) and that was the standard set by the HCC and Trust , and Overview Scrutiny Committee (OSC).

    (Please see Introductory Page attached of the SureSearch teams report .)

    The OSC for instance demanded evidence be shown that Social Care (2007 – 2008), who had entered a NHS contractual agreement with the Trust (Section 31), were not doing satisfactory User-consultations when varying services which legally fell under a Health Service management remit . Evidence was obtained and Social Care were legally obliged to do months of meaningful consultations: other issues were discovered of poorly enfranchised Direct Payment allowances for Users . The Users involved were 200 plus and the knock on effect was some pressure for reform across the services

    Returning to the points however that the GGG member raised, which I may term “resource anxieties” :

    The anxieties of what resources anyone has on the Working Groups and the GGG, emerges because no-one knows. or can see, what kind of reasoned out cost projections there might be for our combined operations.

    I have heard these resource anxieties informally from a number of people but they also emerged on the 5th Dec 2008 in the MHWG (a publicly attended meeting ) and that is why I am now concerned .

    (a) I believe there is an appropriate and reasonable “Need To Know” basis by Working Groups from Gateway Family Services to know what kind of cash and resource allocations there are for Working Groups and indeed the operational/financial basis of where we are going with the LINKs.

    (b) It is encumbent on the Host to create better clarity surrounding this otherwise resource anxieties arise which in fact though genuinely held are not actually quantifiable or even debatable by the GGG or Working Groups

    (c) Furthermore it must be argued : How can a Working Group get an idea of what cash and resource restraints it is working with unless it is properly informed ? How can it shape and constrain its ambitions unless it knows its cash and resource limits ?

    (d) How can the eventual Core LINks Group even quantify that a Working Group is within its resource limits unless it knows what resource and cash allocations there are for the work of LINks and its separate parts ?

    (e) It is a challenge to produce this projection of cash and resource information for operations, but how can we continue on a guesswork basis with Working Groups trying to plan actions which finally must be resource led. ? It is mystifying and working in the dark .

    Therefore I am asking for that information now to be shaped up and shared otherwise Working Groups are open to the accusation that they are being too ambitious or exceeding resource allocations that currently they, like the GGG, are actually unable to debate or quantify .

    Paul Brian Tovey.

    Ps I have also attached the Durham LINks Constitution Document which I believe anticipates the raising of extra money via them becoming a Charity ,

    Pps. See Below For Suresearch Intro Page Re PPI Research No’s Etc ”

    [JPG Not Shown Of Research Into ]

  2. Leaving all else aside, what bothers me most is the progressive loss of the lay scrutiny role in all the emphasis on “involvement”. Whether people wish to be involved or not remains to be seen, but if there is no purpose to it, other than promoting the government’s agenda in various ways (health promotion itself being the most obvious) the valuable and totally independent scrutiny which existed however imperfectly under CHCs and PPI Forums will have gone, destroyed by house-trained complaints procedures (eg PALS and ICAS) and a system (LINks) which puts a shaky ideology of participation and involvement above the need for a well-managed, self-sustaining process with clearly defined and understood objectives. Nothing is clearly understood or defined about LINks, and this reflects either deep confusion at the heart of government or a deliberate intention to dilute NHS accountability and evade criticism.

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