Tuesday, 8 April 2014

Acts of commission: Commissioners and inpatient services for people with learning disabilities

“If we want things to stay as they are, things will have to change”* – Some questions about commissioners and inpatient services for people with learning disabilities




ü  A horrendous scandal in an inpatient service, with national media coverage and accompanying outrage? Tick
ü  Criminal prosecutions for the staff involved? Tick
ü  A government minister committed to change who remains in post long enough to see things through? Tick
ü  A high-profile national programme with (some) money put behind it? Tick
ü  Clear targets for services to achieve, with clear deadlines? Tick
ü  Ongoing monitoring and scrutiny of the national programme? Tick

Yet with all these conditions in place (and scandal too often is the trigger of change), one year and more on from the start of the Winterbourne View Joint Improvement Programme, there is a palpable sense of disappointment in the slow progress being made in helping people with learning disabilities move on from inappropriate inpatient units (a previous blog of mine discusses these units in some detail https://www.blogger.com/blogger.g?blogID=1016904785776950121#editor/target=post;postID=305625676702541356;onPublishedMenu=posts;onClosedMenu=posts;postNum=4;src=postname ).
I don’t intend to spend a lot of time here documenting all the evidence that underpins this disappointment. One excellent source is the Department of Health’s own one-year on progress report (available here https://www.gov.uk/government/publications/winterbourne-view-progress-report ), where the Minister of State, Norman Lamb, himself says:
As you’d expect, this, and future work, is conducted in partnership with a wide range of individuals and organisations from across the health and care sector. Such a broad church of views and interests cannot be permitted to slow the pace of change. Indeed, we need to pick up that pace if we are to make sure no patient finds themselves in inappropriate care settings beyond June 2014. I fully expect and encourage the people that matter most, the self-advocates, family carers and the voluntary sector organisations representing them to make sure we not only work with them but that we do not delay unnecessarily the improvements and transformation in services, care and support we all want to see.
I make no apologies for this impatience. It would be an insult to the experience of those who suffered at Winterbourne View - and to all those who have suffered at the hands of the cruel and the cowardly – if we were to fail.” (https://www.gov.uk/government/speeches/winterbourne-view-1-year-on ).
Also worth a look is the Health and Social Care Information Centre initial report of the Learning Disability [In-Patient] Census 2013 collected information from providers of inpatient services (http://www.hscic.gov.uk/catalogue/PUB13149 ). They reported that 3,250 people with learning disabilities were in inpatient units; 60% of people had been in the inpatient service for at least one year; 18% of people were located in services at least 100km away from their ‘home’ postcode; and for 28% of people service providers could not supply a valid ‘home’ postcode.

In March 2014, NHS England released its first quarter of information collected via commissioners about people with learning disabilities in inpatient units, and how many of them had been transferred out of such services or had clear plans to do so (http://www.england.nhs.uk/ourwork/qual-clin-lead/wint-view-impr-prog/ ). These data show that as of 31 December 2013, there were 2,577 people with learning disabilities recorded as inpatients (although many commissioners didn’t provide any information to NHSE, so this number is a substantial underestimate). Only 10% of people had a transfer plan with a date, and from Oct-Dec 2013 twice as many people were transferred into these services (247 people) as people transferred out (124 people). By far the most common reason offered for a person not having a transfer date was a ‘clinical decision’ (recorded for 1,108 people); lack of agreed funding (48 people); lack of local services (84 people); and lack of suitable housing (93 people) were less commonly reported.

A recent study of delayed discharges from one English learning disability hospital by John Devapriam and colleagues (available in full here http://pb.rcpsych.org/content/early/2014/04/01/pb.bp.113.044388.full.pdf+html ) reported that there were delayed discharges for 14 of the 49 people who entered the hospital over a 12-month period, with delays largely related to delayed assessments and a lack of funding and services for people to move on. The average time from a person being formally considered as fit for discharge to them actually being discharged from the hospital was 283 days.

The Hour of Bewilderbeast

As more information is made available about the (literal) lack of movement so far in response to the Winterbourne View Joint Improvement Programme, I find myself having a lot of conversations with colleagues, friends and family sharing a general sense of bewilderment. Perhaps naively (or perhaps as a result of a folk-memory of institutional closure programmes) I had a belief that a determined government with a clear policy could drive change from the centre when it comes to a focused programme with clearly identified goals.

How does such a substantial network of inpatient services for people with learning disabilities exist, when it has been clear policy across governments that services wherever possible should be local and non-institutional? How can these services continue to exist (and indeed, seemingly thrive) in an environment where it is government policy for their numbers to drastically reduce?

There are many potential explanations, many of them shared by the Justice for LB campaign which is fighting for justice for Connor Sparrowhawk, a young man who died a needless, preventable death in an assessment and treatment unit [for the latest news on the campaign, as well as a record of blogs and activities from people showing their support for @sarasiobhan and @JusticeforLB, please go to ‘The Connor Report’ on @sarasiobhan’s blog here http://mydaftlife.wordpress.com/the-report/ ) or the JusticeforLB facebook page here https://www.facebook.com/JusticeforLB ].

In this blog I want to confine myself to asking some questions about the role of commissioners in the maintenance of these inpatient services for people with learning disabilities. These questions are definitely not coming from a position of expertise when it comes to understanding the behaviour of commissioners, and I hope they will spark a conversation.

The weakness of commissioners

First, for all the talk of commissioners holding the purse strings and therefore being in a position of power in relation to the provider services they commission, service providers seem to have commissioners over a barrel, quite bluntly. I would be very interested to see information on how many services for people with learning disabilities have been decommissioned by commissioners in the past decade – my impression is that commissioners are extremely reluctant to pull the plug on a poor service and commission something different from a different provider. If this is the case (and my impression may well be wrong), why?
·         Are service providers seen as ‘too big to fail’ by commissioners? If so, then this presents a real problem, as the trend (in the NHS, independent and voluntary sectors) is for service provider organisations to be getting bigger through mergers and acquisitions. There are also signs that both health and social care commissioners, rather than moving towards the commissioning of a range of flexible, small-scale support services, are seeking predictability in bigger block contracts with ‘reliable’ provider organisations (even if these turn out to be more expensive than the innovative, local alternatives).
·         In this environment, independent voices that can challenge poor practice from providers (principally organisations of self-advocates and families) are been squeezed out in favour of similar block contracting of increasingly generic, ‘professional’ advocacy.
·         There often isn’t much of a ‘market’ for commissioners to choose from locally, with commissioners reliant on a small number of big local providers, and any stated intentions from a commissioner to decommission a service would presumably sound pretty hollow.
·         Presumably within the ‘patch’ of a health or social care commissioner, there are longstanding relationships with professionals and managers in provider organisations, with some circulation of senior (clinical?) people between commissioning and provision? Human relationships are obviously really important for collaboration and smooth working relationships, but there is also a danger of these relationships being a barrier to the identification of poor service practices and consequent firm action from commissioners.
·         It seems to me that health and social care commissioners are extremely loathe to decommission any service, no matter how bad or contra government policy, and they’re relying on the regulators (CQC and Monitor) to make these decisions for them. The problem is that the regulators either don’t have the power to do this at a collective provider level (CQC) or are so hands-off and focused on the finances that it would take an absolute earthquake for them to do this – which comes too late for the people who’ve suffered or worse within that poor service (Monitor).

Second, the arrangements for health (CCGs and possibly the shadowy CSUs, and before them the PCTs) and social care (local authorities) commissioning seem to assume a local health and social care economy – that local commissioners will commission from local providers in their patch. As NHS Foundation Trusts use ‘business models’ to expand their business, this means that NHS health providers are increasingly geographically sprawling and becoming detached from any one local health economy. The same is already true for independent and voluntary sector health and social care providers. CCGs and local authority commissioners seem poorly placed to hold such large and distant providers to account locally. Social services seem equally in thrall to commissioning from big providers when they should be more adept at actively commissioning a range of local providers, actively monitoring what they’re doing, and shifting commissioning around so that bad providers can be decommissioned quickly.

Third, the sheer complication of commissioning arrangements (within the health sector alone, this could be coming from a CCG, CSU, Specialist Commissioner or NHSE (within area teams or nationally)), with their boundaries and remits constantly shifting (and not linking up with the boundaries of social care commissioners) really weakens commissioners’ attention to (and strategic planning for) services for people with learning disabilities. Joint commissioning arrangements between health and social care when it comes to services for people with learning disabilities are similarly varied and in flux. There is no real clarity about who is responsible – a classic environment for diffused responsibility.

Fourth, financial incentives for providers set by commissioners (e.g. through CQUINs or through withholding some funding from poor services) can perversely lead to providers trying to ‘game’ the system for financial gain, resulting in the opposite of a culture of openness and honesty between providers and commissioners.
Taking these points together it seems that commissioners, far from holding the one ring to rule them all, actually either don’t have any effective levers to use with providers, don’t realise they have any levers, or choose not to use the levers they have. The fragmented structure of health and social care seems almost designed to ensure that no-one feels they have exercisable power to call out on bad stuff happening in services for people with learning disabilities and to stop that bad stuff happening. Instead, the commissioners seem to be operating on a weak model of ‘influencing’, which presumably only works if everyone else in the system is open, honest, genuinely trying to do their best and is looking for ways to get better. This is not always the case, and an ‘influence’ model of commissioning is a terrible model when services are awful and important elements in the organisation providing that awful service don’t seem to care. It seems to me that providers are able to resist any pressure being brought to bear with apparent impunity.

Commissioners are bad at spotting badness

As I’ve discussed above, it seems to me that commissioners are extremely reluctant to decommission poor services and are operating an ‘influence’ model with increasingly big providers which only serves to highlight the apparent weakness of the commissioners’ position. My questions here are whether some of this apparent weakness stems from the lack of effective attention that commissioners pay to the quality of the services for people with learning disabilities that they commission. In particular, how would a service commissioner know, in a timely way, that they are commissioning a bad service for a person with learning disabilities. And if a commissioner knew this, what could they do about it quickly and effectively?

Commissioners need good, regular information on the quality of the services they’re commissioning (at the level of individual services and also at the level of individuals using these services). I think there are a number of reasons why commissioners aren’t getting this information, particularly when a provider service is (unwittingly or otherwise) poor:
·         Commissioners seem to rely on most of their quality information from the provider, with little independent evaluation of service quality or attempts to independently gain information on the experiences of people with learning disabilities and their families concerning the services they are using.
·         It’s also clear that most of the information that health commissioners in particular use are around the other things they commission and obviously understand (volumes of waiting times, throughputs etc) and they don’t know what information they should be looking at in determining the quality of services for people with learning disabilities. Again, commissioners often seem to rely on the provider to tell them how they should be assessing quality.
·         Services for people with learning disabilities are always (literally!) at the bottom of the agenda for health service commissioners, and not very important to them in how they think they’ll be judged from higher up in the NHS (particularly in terms of finances) or publically.
·         Commissioners typically look at issues in terms of volume. It is much rarer for commissioners to commission on the basis of what is best for individuals, and they rarely regularly evaluate providers’ quality in terms of whether they’re meeting individuals’ needs.
·         It seems to me that health and social care commissioners are increasingly relying on CQC inspections to make judgements on the quality of service providers. CQC inspections have acquired some (metaphorical) cojones recently, but CQC can’t get round all the individual services regularly enough for them to be relied on to pick up on poor services quickly enough.
·         Health and social care commissioning is increasingly becoming generic in structure, with fewer specialist learning disability commissioners and expertise (and available time) diminishing. In this environment, do commissioners have a clear idea what a good (and bad) service for people with learning disabilities would look like?
·         Commissioners have become physically (and to a certain extent culturally) separated from the services they commission. Is it much more difficult to get a really good sense, over time, of a service when you have to arrange a special visit, taking out an entire work day, rather than just popping in regularly without necessarily having to ask permission first? It also means that meetings about service quality are largely just that – meetings between groups of professionals who all speak the same language – and there are real signs of disconnect between the assumptions and judgements agreed in these meetings and the reality for people with learning disabilities and their families.

A price worth paying?

If commissioning services for people with learning disabilities, particularly people with ‘challenging behaviour’, is a low-priority niche for commissioners with more important (to them) things on their mind, it’s possible that current commissioning arrangements for inpatient services suit commissioners rather well. Is the high price of individual inpatient placements for commissioners a price worth paying, if it means that they don’t have to develop a decent local strategy, and ‘difficult’ local people get outsourced to other organisations in other places, who will take the public opprobrium if people in those organisations are badly treated? The Winterbourne View Joint Improvement Programme is just as challenging for commissioners as it is for providers, and perhaps it isn’t wholly surprising that some commissioners are resistant to change.

In an environment where government seems to have given away most of its levers of power with regard to the NHS, commissioners are bearing much of the weight of expectation in the Winterbourne View Joint Improvement Programme. Yet if this blog makes sense, the trends are all in the wrong direction for commissioners to exercise effective leadership. Compounding my pessimism is service integration, a juggernaut guided by satnav with no regard to the reality of the roads it is travelling along. To my mind, integration of health and social care may only make things worse for people with learning disabilities – trapping people in ever bigger provider organisations with totalising tendencies (remember one of the central insights of supported living – that a person’s housing should be separate from their support, so people can sack their support without also having to move home?) that will place commissioners in an even weaker position.

I’m someone who (obviously!) isn’t a commissioner, and I would be very interested to hear what more informed people than I think about this blogpost. Does any of this make sense, and if it does, are there any prospects for improving the situation so that effective commissioning can serve the aspirations of people with learning disabilities and their families nationally and as a matter of course?


* The quote in the title comes from one of my favourite novels, The Leopard, by Giuseppi Tomas de Lampedusa, and is uttered by Tancredi, the dashing but shape-shifting nephew of the novel’s aging Sicilian prince (the leopard of the book’s title). The photo is of Alain Delon, who played Tancredi in Visconti’s film of the novel, possibly the only film that takes longer to watch than its source novel does to read…

1 comment:

  1. Reading about these things is very distressing and disturbing to those of us who care for and love individuals who are at risk of becoming victims of such – policies, ideologies, theories of whatever it is that puts them in place. Maybe the layer of the onion that needs to be examined a lot more closely is the person with LD themselves, and a bit more thought given to what it is that makes us “human”.
    It is the goal of every parent, possibly even less than devoted ones, that a child should become as independent an adult as is feasible, and be able to make their own choices. It isn’t an absolute though, nor can the desire for independence be taught or imposed. People with LD are usually well able to make choices though, aren’t they? And I can’t see why making the choice to reject fake definitions of independence, and react with challenging behaviour is seen as so problematic and hard to fathom. Part of the process of raising a child, by a parent and by society, is to socialise, to repress quite a lot of what is human! Adults with LD are not children, but they do perhaps sometimes retain some of the directness and lack of inhibition of childhood, maybe in a manner that also retains what is honest and direct in thinking feeling creatures. Not less human but more. I think what parents, families and “proper” carers understand is the importance of trust and continuity, not the barbaric imposition of behaviourist theories. Most of us pursue independence in search of those things, not as a way of being forced to exist without them.

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