This proposal has been put together in the light, not just of the recent changes in NHS service commissioning, following the present government’s determination to impose yet another revolution on the NHS, but of developments generally over the past several years. It coincides too with my own pending departure from the scene after more than forty years spent as a mental health social worker. For the last twenty of those years, I have acted as the independent facilitator of a group of mental health service users.The group’s purpose has been to offer feed-back to service managers on the success or otherwise of their policies and practice.
The proposal offers a way of consulting carefully in any given region or locality. Its focus is on people who have mental health problems and it makes no attempt to apply to other client groups. If some of the points and recommendations it makes have any pertinence beyond mental health, this will be by coincidence.
Background and Context
I think that, as the meaning, purpose and principle of user consultation is about keeping services attuned and receptive to the people who need their help, so the structures that support consultation activity should also, in principle and in practice, fit and mould themselves to those same people, seeking to remain attuned to them, rather than expect them to keep following service shapes, or dance to service tunes and procedures.
So, fairly recently, government has decided that commissioning should be based on primary care, in other words on General Practitioners. Should that mean that every Primary Care Commissioning Group (PCG) or even GP practice should now have its own user group, or user network, making previous user formations and histories redundant ? I think not. Governments keep changing NHS formations. That should not mean that structures to enable NHS accountability to its public should keep changing with them. The public should not be required to keep changing its shape to suit the service. Is that what we, the public, are for ? To serve the service ?
But I would say that we have here an opportunity to review what else is going on in terms of “user consultation.” The latter has been a service requirement for the past twenty years. Methodology has tended to develop by default and at random. Best practice in consultation methodology is unclear, un-coordinated and – in my view – sadly conspicuous by its absence. And, yes, user consultation tends still to be built around the present shapes of services, and not the other way round.
Furthermore, the present shapes are not just determined by the long-established split between service commissioning/monitoring on the one hand, and service provision on the other. They are also formed by a provider sector, where – especially perhaps in the area of social care – state-run provision has been largely out-sourced to the voluntary sector, with NHS provision also now a major contender in the market place. Thus, commissioners are often dealing with a range and variety of bodies and organisations running local services, organisations of all shapes and sizes, many of which will at intervals be competing against each other to win contracts to run one or another aspect of the local service provision. Some of the voluntary sector organisations will be relatively small, their remit and history purely local ; others will be large, their profile and organisation on a national scale.
But even this is not the whole story. Within bodies, too, there are different departments, each with its own contract and set of top-down requirements. Thus, in the Town Halls, there will still be Social Services departments, some running services ; and there will be Housing Departments as well, either directly managing supported housing for people with mental health problems, or else commissioning and monitoring voluntary sector organisations which do that job on the Department’s behalf.
And as far as service users are concerned, each of those bodies and departments is required to be “passionate about user consultation,” and at inspection and in service tender interviews, to demonstrate that passion in their policies and practice. So each has its own system and structures for consultation, its own group to consult with, its own proud achievements to flag up on website and promotional brochure.
And each consults, in most cases, without any reference to what other bodies or organisations or departments are doing in their locality, even though those bodies and organisations and departments are often supporting – and consulting with – the very same people as their clients. In effect it can be said that organisations are actually competing with each other (though not admitting it) for the same limited supply of service users to consult with, to run events for, to fill a room with. This situation and conduct can fairly be described as professionally reprehensible and potentially damaging to vulnerable people. But I don’t think it’s the professionals who are mostly to blame here. I think the systems and shapes and philosophies of the market which we have all accepted, or at least assented to, make this malpractice inevitable and in order to achieve good and careful practice, we shall have to agree together to resist the prevailing tide.
If I have long-term mental health problems and live, say, in central London, what name should I use for my location, my frame of reference and belonging ? Where does my voice, my witness, mostly belong ? In trying to work out the answer, I might be excused for feeling like Paris judging between the Beauties. Do I say, oh good, living in central London means I am a citizen of CNWL NHS Foundation Trust Land. What glorious lines ! What Beauty ! Or, oh good, I live in Westminster MIND Land. Or oh good, in Westminster Housing Department Land. Or in NHS Central London Clinical Commissioning Group Land.
Or might I just say, I live in Westminster ?
I want to say, I just live in Westminster. I just live in Westminster and all those different Westminster mental health services that wish and are required to consult with me on this and on that, and on everything under the sun, need to get their act together. They need to act together, for my mental health’s sake. They need to stop disturbing me, for their targets’ sake.
In fact, we have to acknowledge that, over recent decades, huge efforts have been made to improve service co-ordination in many areas of need, including that of mental health. There have been several acts of parliament, leading to a whole series of convulsive service re-organisations, following which, once the dust settled and the wounds healed, real and genuine advances have been slowly achieved in various aspects of the service. For instance, different disciplines now work more closely together, not in separate offices, but in teams, both in clinical settings and in the community, enhancing professional communication and partnership and resulting in a more co-operative, comprehensive and responsive approach to the needs of individuals and their families. But the system keeps contradicting itself and unravelling in this aspect what it has sewn together with such labour and effort in that. As we have at last ironed out dysfunctional division and competitiveness in one part of service provision, so we make a virtue of division and competitiveness in another part. Here, different disciplines at last come together and form the beginnings of a coherent and responsive service. There, competing organisations multiply, fragmenting delivery all over again.
I believe that, in the matter of consulting with service users – people who presumably find life difficult to cope with at the best of times – services have a duty to make their consulting as careful and as light-footed as possible. There should be a maximum of service collaboration and a minimum of bothering people. There should be a minimum of meetings. Contact should be restricted to the purely rewarding.
My proposal is therefore based on the premise that if I lived in Westminster, that is all that matters. In other words, the proposal will be based not on service identity, or service configuration, but on person and where person lives.
The proposal will also be based on a few principles already hinted at. They come from a longer list of principles for good practice in user consultation available in a paper called “On Our Own Terms.” The paper’s main author was Dr Jan Wallcraft. It was published by the Sainsbury Centre for Mental Health in 2003 and can still be found on the website of that organisation’s successor, called the Centre for Mental Health : http://www.centreformentalhealth.org.uk//pdfs/on_our_own_terms.pdf
The paper was based on findings from 318 user groups around the country. It concluded that “Where involvement is done well, it can be empowering for service users/survivors and even help their recovery, but when done badly it can damage people’s mental health.” (page 77). After nearly 20 years’ experience as user support worker, I would echo that conclusion of ten years ago, although I would make some additions. When involvement is done badly, it can very seriously damage people’s mental health. Further, in my opinion, involvement done badly has become an acceptable norm.
Ten years ago, and in recognition of the dangers, “On Our Own Terms” recommended that the list of principles it quoted should form the basis and starting point for a set of national guidelines for user involvement. It went on to propose that “The Department of Health (DoH) should then issue [those] guidelines to Strategic Health Authorities, Primary Care Trusts and NHS Trusts” across the country (page vii). That recommendation was not followed, an omission which I deplore and see as an abrogation of duty.
Here are four principles, taken from the list put forward in Dr Wallcraft’s paper, which I would like to quote for the purposes of this proposal.
A base of support and accountability:
Users need their own organisations, structures and meetings to give them a base to work from.
User involvement needs new procedures and structures:
New procedures and structures need to be developed – user involvement cannot be simply added on to existing ones.
Professionals go to where service users/survivors are:
Professionals need to be prepared to go to service user/survivor groups (provided this is wanted by the members) rather than expect service user/survivor groups to send representatives to professionals’ meetings.
Organisations should set up User Involvement policies and programmes of implementation:
Unless there is a policy and programme and someone [independent of service hierarchies] whose job it is to implement the programme, user involvement will tend to slip off the agenda and be done badly if at all.
The proposal is set out in broad brush terms.
1. There should be an independently supported user core group in every region. If a primary care commissioning group covers more than one region, it should support more than one user group.
2. So that good practice can be shared between core groups, commissioner support should be available for liaison and sharing between them, initially at the level of the support workers, who should be experienced practitioners who know the systems well. Co –work or shared initiatives between the groups can be left to evolve as relationships evolve.
3. The core groups would be region-centric, not service-centric. In other words, negotiation would have to take place between all the main mental health services functioning in the region, purchaser and provider, statutory and voluntary, with a view to ensuring that each service and organisation recognise the region’s core group as the main user voice and resource they must refer to, consult and support.
4. The implications of this structure would be various.
(i) For instance, following this step, a large organisation such as an NHS Provider Trust, spanning several regions, would need to regionalise its user policies and activities and work more closely, by region, with other bodies. Trust-wide initiatives would need to be reconciled with regional accountability.
(ii) The practice would cease by which, due to lack of co-ordination between organisations or managers, user events are duplicated, or their timing is not co-ordinated, or particular managers set up consultative procedures for their own particular project, without reference to practice guidelines or other initiatives going on elsewhere. All consultation requests would go to the core-group in the first instance. The group would only accept requests which are manageable.
5. Regional core groups would not replace other user groups operating in their region, but the latter would now feed into the core-groups, or stay closely in touch with them, or have representatives sitting on them, so that all services and service managers in the region make contact for consultation with just the one centre, the regional core-group, well supported and strongly and independently based.
6. The methodology of careful user consultation needs good practice guidelines. But even good quality consultation can be a clumsy tool and should be looked at with suspicion, not as an automatic virtue. If I need help, maybe through traumatic times, I do not necessarily then want to keep being interviewed on my experience ; in just the same way, if I am eating out, I do not necessarily want to keep being interrupted mid-mouthful with “everything all right ?”
Every effort should be made to utilise information already available, so that consulting can be limited to creative innovation and safe practice. For instance, each multi-disciplinary Care Programme Approach meeting (CPA) is an opportunity to identify and record an individual’s experience of services. If that information constantly coming in could only be collated through IT, much asking of further questions would become instantly unnecessary.