Monday, 2 June 2014

Now is the Winter(bourne) of our discontent...

Now is the Winter(bourne) of our discontent

As has been universally acknowledged, the programme set up by the government in the wake of the Panorama undercover expose of horrendous abuse at Winterbourne View, a ‘specialist hospital’ for people with learning disabilities, has not to date been a success. From the description of the Care Minister, Norman Lamb, of the programme as an ‘abject failure’ ( http://www.hsj.co.uk/news/commissioning/winterbourne-view-scheme-an-abject-failure-minister-admits/5070443.article#.U4yKWPldWCk ) to the director of the programme, Bill Mumford, stating in a recent blog that “ A lot has been written by me and elsewhere which expresses a widespread and understandably deep frustration with the sector's response since” ( http://www.local.gov.uk/place-i-call-home/-/journal_content/56/10180/6211266 ), a winter of discontent has not been made glorious summer this June.



Three years on from the original Panorama expose and with only one year left of the official Winterbourne programme, the latest information from NHS England ( http://www.england.nhs.uk/ourwork/qual-clin-lead/wint-view-impr-prog/ ) is that the position is not only not improving as quickly as was planned (hoped for?), but that things are actually moving in the opposite direction to that mandated by the programme. @sarasiobhan has expressed far better than I can ( http://mydaftlife.wordpress.com/2014/06/02/a-place-i-call-home/ ) the sense of outrage that has met this continued evidence of the lack of impact of the Winterbourne programme. 

In this blogpost I just want to confine myself to a few observations and a proposal that is almost certainly completely unworkable but suggests a very different starting point to the current approach, which draws somewhat on the progress of the closure programme of large-scale institutions for people with learning disabilities in the UK.

Observations

1) There is a discrepancy in the numbers, between the 3,250 people in these services identified in the latest learning disability census (http://www.hscic.gov.uk/ldcensus ) and the 2,615 people in these services identified in the latest returns from commissioners. I think the reason for this discrepancy is quite straightforward – both numbers are correct, it’s just that there are around 500 people in these services who health commissioners don’t know about. If a person has been in one of these places for a long time (which we know isn’t unusual) how many reorganisations of commissioning have taken place (let alone all the internal reorganisations and relabellings) in that time. Are the cheques still being paid while the person has quite literally been forgotten about?

2) For the first two quarters that data have been available, the number of people being transferred into these services has been substantially bigger than the number of people being transferred out. I was shocked by this at the time, but on reflection I shouldn't have been as surprised as I was. The focus of the Winterbourne programme has largely been on those people who are already in these services – understandable, but unlikely to be enough to tackle the systemic combined behemoth of fragmented commissioner inattention and provider expansionism supporting these services ( http://chrishatton.blogspot.co.uk/2014/04/acts-of-commission-commissioners-and.html ).

3) I can understand the dilemma of whether to set up the Winterbourne programme as a time-limited endeavour versus something ongoing. However, given where we are now I think the time-limited nature of the programme with only 12 months left is a real problem. From what we’ve seen so far, I suspect that many commissioners and providers will be tempted to stick it out and hope that any pressure being exerted by the Winterbourne programme will soon go away (just see what happened after the disbandment of the Valuing People Support Team).

4) According to the latest NHS England figures, by far the most common reason given by providers (via commissioners) for people not having plans to transfer out is a ‘clinical decision’. Four thoughts on this for now, that for me raise questions about the appropriate status and role of psychiatry in these services:
·         Although these are designated ‘hospitals’, it’s useful to remember that institutions for people with learning disabilities were originally run by local authorities, and it was only the creation of the NHS in 1948 that magically turned these places overnight into health services (partly through their gradual colonisation by psychiatry throughout the 19th and early 20th centuries).
·         Reasons for transferring people into these services are frequently reported as ‘learning disability’, ‘challenging behaviour’ or ‘mental health problem’. The first two of these are not in themselves health issues, and effective support for the third can frequently come from non-medical approaches.
·         One would hope that ‘hospitals’ would at least provide effective physical health care for people with learning disabilities (especially as they can underpin many behaviours labelled as ‘challenging’ https://www.improvinghealthandlives.org.uk/securefiles/140602_1606//Factsheet-CBed.pdf ), but #justiceforLB and many other people’s experiences show that this simply cannot be guaranteed in these services.
·         There is precious little evidence that these services as a ‘model’ of care are routinely providing high quality therapeutic environments for people on the short-term basis they are apparently set up to provide. Over two-thirds of people getting anti-psychotic medication in the last month, over a third of people experiencing hands-on restraint in the last three months, 60% of people having lived in the service for a year or more (all from the learning disability census) – these services are not delivering on their own terms, let alone according to other ways of thinking about a person’s life.

A proposal

This proposal is not thought-out, economically tested, or in all probability practical. I simply offer it as a sketch of what could happen if we start from a different set of assumptions, and as the start of a conversation.

Most commissioners have demonstrated that they have not got anywhere near the target for transfers out by 1 June 2014, and I suspect may be too small, fragmented and focused elsewhere to pay proper attention. So:
·         Close all of these services to new admissions.
·         CQC to make a clear statement that they will not register new services of this type, and that they will have a process of deregistration of existing services.
·         For all commissioners still funding people in these services, take that funding off them to be administered by a national ninja closure taskforce. This would give the taskforce a starting budget of over half a billion pounds per year (could add in the Winterbourne View programme money too?).
·         Put people with learning disabilities and families really in charge of this ninja taskforce, making decisions about who is appointed to work on the taskforce in which capacities, what the taskforce does, and how it operates.
·         The ninja taskforce works to develop local, individual supports for people moving out of these services – with new people, agencies and supporters rather than with the usual provider suspects (unless the usual provider suspects can come up with something really good that the person and family members want). Obviously this would be person-centred, with the person and family in charge of circles of support.
·         Funding at its current ATU level moves with the person (howls of protest, two-tier Rolls Royce service, all true, but it would demonstrate what good looks like).
·         The ninja taskforce also helps to develop local, individual supports for other people with learning disabilities who might have been sent to these places by commissioners, including strong local structures for self advocacy and family advocacy.
·         The ninja taskforce to help to develop ways of supporting people with learning disabilities in acute distress/crisis for short periods of time.


I’m sure there are a million reasons why this is unworkable (sadly my reservations are mainly about how such a proposal could be sabotaged by various players). I’d be very interested to know what people think - it's time for more than Glycerine and Cucumber to protect us from this winter.

Tuesday, 20 May 2014

Mirror, mirror on the wall

Mirror, mirror on the wall
I’m going to try and keep this blogpost relatively short (for me), because as you’ll see if you read on, it’s navel-gazing self-indulgence of the worst order. So please feel free to save yourself some time, stop here, and enjoy this youtube clip of the Marx Brothers doing the mirror scene in Duck Soup.


As part of the day that Hannah Morgan and I put on for the #justiceforLB #107days campaign (http://107daysofaction.wordpress.com/2014/05/07/day-49-an-academic-point-107days/ ), one of the things I said was that academics need to take a long, hard look in the mirror. It’s the kind of thing I say – sounds good doesn’t it, appropriately breast-beating (so you’ll think I’m a nice guy, on the side of good, and you can reassure me that of course the work I’m doing is worthwhile) yet sufficiently vague to not really hold me to anything. I’m good at saying (or more often writing) things like that – I can excoriate along with the best of them, and academics largely survive and thrive occupationally on words (and in my case numbers, lots of numbers, BIG numbers, with graphs and statistics and all sorts). An appropriately uncomfortable place to be when action not words is and should be the rallying cry.

One of the things that the #justiceforLB #107days campaign has retaught me, with great force, is the miasma of self-interest that feeds on the lives of people with learning disabilities and their families. Follow the money! Cui bono - who stands to gain? (chuck in a bit of Latin there, because it sounds learned, even though I never did Latin at school, which I’m now mentioning so you don’t think I’m posh). And of course, following the money, academics like me gain financially, occupationally, and in terms of status – and we do so while telling ourselves that what we’re doing is on the side of right and ‘helps’ people with learning disabilities and their families. And I, for one, can lead a life as disconnected from the reality of the lives of people with learning disabilities and their families as any shiny chief executive.

On rare occasions a person with learning disabilities or a family member has quite rightly challenged me about what I do – has the research I’ve been involved in really made a difference, and couldn’t all the money spent on the research I do be better invested directly supporting people and families? And to be blunt, I don’t really have an answer to this challenge that really convinces me, which makes it difficult to come up with a convincing answer for anyone else. I can blether on about raising awareness, helping government to change policy, helping to improve the ‘evidence base’, influencing the discourse, working with services etc until the cows come home. I don’t know if any of this is really true, and how it could be weighed in the balance against all the money that’s been spent on me and the cumulative cost of the research grants I’ve done.

Of course, part of me writing this blogpost is to show you what a nice, tortured soul I am, and I’d like nothing better than to receive oodles of reassurance that what I do does make a difference to people with learning disabilities and families. But if you’re still reading, this reassurance would 1) be a really bad idea (let’s all pat ourselves on the back and reassure each other we’re doing fine – the sparkly Spirograph of shame strikes again), but much, much more importantly 2) not what I’d like to have a conversation about.

If you are still reading and minded to respond in any way, the questions I’m really interested in hearing your take on are as follows:

1) What, if any, types of research/evidence (whatever research/evidence means…) make any sort of positive difference to the lives of people with learning disabilities and their families?

2) If there is the prospect of research/evidence having a positive impact (whatever that means…), how should it be done and how would we know that it has an impact?

3) What, if anything, can academics do (not just in terms of research) to actively support people with learning disabilities and their families?


I don’t have an answer to any of these questions, although I will say I think it’s more than an issue of translating/transferring research/evidence into places where it can be ‘used’. If you want to share your thoughts that would be great (but more words???) – if you want to switch off your device and go and do something less boring instead, then that’s great too (insert obscure kids TV reference to lighten the mood at the end). At the very least, hope you enjoyed the Marx Brothers clip.

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 loath 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…

Tuesday, 18 March 2014

A place of greater safety? Risk and people with learning disabilities

A place of greater safety? Risk and people with learning disabilities




In this blog I want to think about how risk assessments in specialist learning disability services embody a very partial understanding of risk, particularly when set alongside public health ways of thinking about risk. I also want to go through what I think some of the consequences are for people with learning disabilities, and how we might get a more balanced approach to understanding risk. Why is this blog called ‘A place of greater safety?’ – well, I’ll tell you later.

Many people have (rightly) argued that a greater degree of ‘risk’ is necessary for people with learning disabilities to lead more fulfilling lives, and that ‘risk’ is a fundamental right for all citizens. However, these sorts of argument do not challenge how ‘risk’ itself is conceptualised; my intention in this blog is to challenge the notion of ‘risk’ itself as it is commonly applied in risk assessments with people with learning disabilities.
Within social care and other specialist learning disability services, notions of risk concerning people with learning disabilities have come to be almost synonymous with the practice of risk assessment. Definitions and approaches to risk assessment in social care are legion, but this one below from SCIE is helpful and clear in describing the main components of risk assessment (http://www.scie.org.uk/publications/adultsafeguardinglondon/riskassessment/keyprinciples.asp):

“Assessing the risk to vulnerable people against their right to make choices about how to live their life is difficult, and in any given situation different people will have different views on striking the right balance. This means that agreement on the degree of risk in every situation may not be possible. However, professionals should have a common understanding of the principles they are working to, the legal structures in place, and the documentation that can help and that they need to complete. It can be helpful to bear in mind the following key principles:
·         Risk work should be person-centred and empowering.
·         The Mental Capacity Act asserts people’s right to make decisions, even unwise ones, if they have the capacity to do so. The Mental Capacity Act and the code of practice and Deprivation of Liberty Safeguards that accompany it, are all key legal considerations in evaluating risk.
·         Government guidance is that 'people have the right to live their lives to the full as long as that does not stop others from doing the same’.
·         Risk assessments should always consider the benefits of the proposed action on the adult at risk and weigh these against any risks.
·         The person’s strengths should always be considered when evaluating risk.
·         Multi-agency working is important in assessing and managing risk, but should always take place within a person-centred framework that avoids blanket restrictions.
·         Organisations should model a positive approach to risk-taking that supports employees to enable people to live the life they want, rather than a defensive approach that focuses too much on risk to the organisation.
·         Decisions on risk should be reasonable, proportionate, accountable and defensible, and rooted in evidence-based practice and partnership working.”

This and similar descriptions of risk assessment show well the characteristics of risk assessments and the assumptions that underpin them, including those taking a ‘positive’ view of risk-taking.

Most obviously, this view of risk is tied up with a judgement of decision-making capacity. If a person with learning disabilities is judged to have the capacity to make a decision about the risks of a particular course of action, then no risk assessment is required. But if a person with learning disabilities is judged not to have the capacity to make a decision about the risks of a particular course of action, then a risk assessment must be conducted.  There are sound legal reasons for this in terms of the Mental Capacity Act in England, but I believe that binding up risk (or more accurately the responsibility of services to do something about what they consider to be a risk) with decision-making capacity has its downsides for people with learning disabilities.

For example, this approach to risk tends to individualise risk (as risks are only assessed person by person) and locate the evaluation of risk within the person (as risk assessment is dependent on a capacity within individuals). In addition, for those whose capacity has been questioned, this leads to repeatedly and wearyingly repeated assessments for specific activities every time someone wants to do something. Faced with this repeated bureaucratic requirement, would it be any surprise if people with learning disabilities and their supporters gradually reduced their ‘risky’ activities, taking refuge in the ‘safe’, saving the risk assessment for infrequent special occasions, and surrendering spontaneity altogether?

The tying of risk assessment to decision-making capacity also raises the question of risk for whom – are these assessments really about risks to harm that people with learning disabilities may experience (in which case why aren’t they done with everyone, whether they demonstrate decision-making capacity or not?), or are they in the end about limiting the liability of those organisations that support people?

So far, my contention has been that risk assessments in social care are tied to decision-making capacity, resulting in a conception of risk that is located within individuals and that is more about risk to organisational reputation rather than risks to people with learning disabilities. Risk assessments in social care are also, I believe, underpinned by a set of additional assumptions that I believe are partial, unbalanced, and in many ways unhelpful to people with learning disabilities.

First, risk assessment assumes a place of safety (usually where the person lives) from which potentially risky activities happen (somewhere outside).

Second, risk is defined in terms of activity, as opposed to the ‘safe’ option of doing nothing.

Third, risk is defined in the short term (doing Activity X in the reasonably near future) rather than considering longer-term consequences.  

Finally, any risks to the person contained within the risk assessment are typically seen as coming about through harm being done to the person by some external agent (for example other people or traffic).

For me, this conceptualisation of risk as potential harm coming to ‘vulnerable’ individuals from an external agent as a result of activity ‘outside’ the place of safety of the home is seriously misplaced, and stands in direct contrast to how risk is conceptualised in public health. There are probably as many definitions of risk in public health as there are public health researchers, but definitions of risk coalesce around the sort of definition provided by the World Health Organization:

World Health Organization “A risk factor is any attribute, characteristic or exposure [my italics] of an individual that increases the likelihood of developing a disease or injury. Some examples of the more important risk factors are underweight, unsafe sex, high blood pressure, tobacco and alcohol consumption, and unsafe water, sanitation and hygiene.” (http://www.who.int/topics/risk_factors/en/)

For me, this public health definition of risk contrasts at almost every point with the assumptions underpinning social care and specialist learning disability service risk assessments. Some of these contrasts are as follows:

First, risk in public health terms concerns the risk to populations or groups of people, irrespective of decision-making capacity. Having decision-making capacity does not make you immune to the health risks associated with unhealthy environments (e.g. unsafe water, sanitation and hygiene) or from the structural conditions and environments that discourage healthy behaviours and encourage unhealthy behaviours (e.g. poverty, unemployment, living in areas that feel threatening). This means that risk in public health terms is not considered to be a property (or sole responsibility) of individuals, but as the product of people’s histories, life circumstances and environments and how people interact with them. By only focusing on people below a threshold of decision-making capacity, social care risk assessments both ignore a large population they are supporting and do not consider the whole ecology of people’s lives in terms of conditions that promote or hinder health.

Second, risk in public health terms uses an expansive view of health (see  http://theindependentlivingdebate.wordpress.com/2013/12/04/can-public-health-be-helpful-in-achieving-independent-living/ for an explanation of what I mean) and recognises the complexity of how different aspects of health interact. Social care risk assessments focus on a very narrow set of risks, which ignores the major causes of distress, ill health and premature death for people with learning disabilities. For example, the Confidential Inquiry into Premature Deaths of People with Learning Disabilities, run by the Norah Fry Research Centre at the University of Bristol (see final report here www.bristol.ac.uk/cipold/fullfinalreport.pdf) reports the following major immediate and underlying causes of death for people with learning disabilities, in descending order of underlying causes of death:
1)      Heart and circulatory disorders (21% of people immediate cause of death; 22% of people underlying cause of death);
2)      Cancer (15% of people immediate cause of death; 20% of people underlying cause of death);
3)      Respiratory disorders, including choking (34% of people immediate cause of death; 16% of people underlying cause of death);
4)      Nervous system, including epilepsy (10% immediate cause of death; 16% underlying cause of death);
5)      Congenital and chromosomal causes (<0.5% immediate cause of death; 7% underlying cause of death);
6)      Digestive system (4% immediate cause of death; 4% underlying cause of death);
7)      External causes (3% immediate cause of death; 4% underlying cause of death);
8)      Mental and behavioural disorders (1% immediate cause of death; 3% underlying cause of death)
9)      Infections (5% immediate cause of death; <0.5% underlying cause of death).

As this list clearly shows, the potential harms that are the typical preserve of social care risk assessments (external causes, controlling the outward manifestations of mental and behavioural disorders) are not the major health issues that cause the vast majority of people with learning disabilities to die. Although social care services may consider that most of the major causes of death for people with learning disabilities (and their assessment) are the responsibility of health services, social care have a major role to play in assessing and working to reduce the risks associated with poor health and premature death amongst people with learning disabilities (see for example the recent Health Charter for learning disability social care services http://www.improvinghealthandlives.org.uk/publications/1223/Improving_the_health_and_wellbeing_of_people_with_learning_disabilities._Guidance_for_social_care_providers_and_commissioners_(to_support_the_implementation_of_the_health_charter) ). This might include:
·         Social care providers need to have an understanding of health conditions such as epilepsy and dysphagia so that they can assess and support people with learning disabilities in ways that support people’s health and autonomy. This will include ‘risk assessments’ of environments and service practices that promote or put at risk people’s health in these areas.
·         Social care providers have a duty to ensure that people with learning disabilities get access to good healthcare screening and treatment (there is evidence that social care providers can make a crucial difference to whether people with learning disabilities attend annual health checks and get good healthcare in mainstream hospital settings). A ‘risk assessment’ for making the journey to the healthcare setting needs to include a risk assessment to people’s health if the journey is not made successfully.
·         Social care providers have a responsibility to ensure that they are promoting good health amongst the people they are supporting, not only in aspects of people’s lives such as nutrition and diet, physical activity, and substance use, but also in areas such as promoting meaningful social relationships with partners, family and friends, employment and being respected as a citizen of value.

Third, the focus of a public health view of risk necessarily spans both long-term and short-term risks to health, particularly as many of the risks to major population health problems work over a lifespan or even longer. The short-term focus of most social care risk assessment works against the reduction of those longer-term health risks that end up causing the death (and reducing the fulfilment in people’s lives while they are alive) of most people with learning disabilities. A series of risk assessments that lead to a person hardly ever going out or trying new activities may protect the organisation against litigation and reduce the potentiality for short-term ‘accidents’, but the longer-term impact of inactivity and social isolation is likely to be far more serious for the person’s health in the longer term. There is a similar issue about the social care risk assessment assumption that activities are inherently risky. This may well be true, but it is also the case that inactivity is inherently risky too, and risk assessments need to take the whole range of risks to health into account.

The final point I want to make concerns the assumption in social care risk assessments that risks occur when someone wants to go out from a ‘place of safety’, typically the place where they live. There are two ways in which I want to strongly challenge this assumption. The first is a repeat of the points made above – sitting at home and never going out may reduce one set of risks to health, but it also inherently increases other sets of important risks to health too – I wonder if there are any environments that can be considered to be places of safety or risk-free in these terms. My second challenge concerns residential services of various types for people with learning disabilities. Evidence over years has shown that many services where people with learning disabilities are “placed” are very far from being places of safety. Furthermore, the very factors that are associated with unsafe services for the people living there (culturally closed environments, where residents are not supported by staff to have active contact with or a meaningful presence in local communities) tend to be the direction of travel that specialist learning disability risk assessments drive services towards (see @MarkNeary1‘s daily blog for the #JusticeforLB campaign about his son’s stay in an assessment and treatment unit, ”107 stories from an Assessment and Treatment Unit” http://markneary.blogspot.co.uk/ or @sarasiobhan’s blog about her son LB’s preventable death in an Assessment and Treatment Unit caused among other things by the Unit’s lack of risk assessment and preventive action concerning her son’s epilepsy http://mydaftlife.wordpress.com/the-report/ ).

Put this together and I would suggest that learning disability services (whether social care, health or independent sector) need a different (or additional?) way of assessing risk on a reasonably regular basis, one that applies to everyone with learning disabilities and assesses the risks to a wide range of important health outcomes for people, taking due account of health-enabling (or health-blocking) environments and living conditions, and the factors that promote long-term positive physical health, mental health and wellbeing. Such an assessment would place current risk assessments within their proper context, and would hopefully lead to some quite different decisions about what is prioritised when people are being supported. This might sound like one of my usual hopelessly utopian strictures, but an example of such a risk assessment, although in its early stages of development, has been produced by a group of learning disability nurses in England. The assessment is called the Health Equalities Framework (or HEF) for short, and it’s worth having a look at as an example of what such a risk assessment tool might look like (see http://www.debramooreassociates.com/index.php?option=com_content&view=article&id=402:the-health-equalities-framework-hef&catid=23:national-news&Itemid=39 ).


Note: As I promised to tell you at the beginning, the title of this blogpost is from Hilary Mantel’s superb novel about the French Revolution, told through the eyes and words of some of its protagonists. In the novel, the ironies related to the title multiply as people increasingly desperately seek safety from the Terror, which is of course being run through the Committee on Public Safety. The cruellest irony of ‘A place of greater safety’ is revealed by Camille Desmoulins, who says in the novel that the only ultimate ‘place of greater safety’ is death.

Friday, 14 March 2014

A public accounting

A public accounting
Coming up to three weeks after the publication of the independent investigation into Connor Sparrowhawk’s death (aka LB – or Laughing Boy) the fitness for purpose of the NHS Trust responsible, Southern Health NHS Foundation Trust, is becoming increasingly questioned. A series of CQC (Care Quality Commission) inspections reporting very poor standards of care requiring enforcement action across a range of Southern Health services, allied to the health regulator, Monitor “investigating governance concerns triggered by CQC warning notices”, reinforces the sense that all is far from well at Southern Health.

[For all the latest news, as well as an ever-lengthening series of blogs from a wide range of people showing their support for @sarasiobhan and @JusticeforLB and their horror at the way the Trust dealt with LB and his family, please go to ‘The Connor Report’ (we really need a Starsky & Hutch-style theme tune) on @sarasiobhan’s blog here http://mydaftlife.wordpress.com/the-report/].

In a series of magnificently forensic blogs, @rich_w has gone through the independent investigation report, Southern Health Board minutes and the media appearances of Southern Health staff to raise fundamental questions about Southern Health’s fitness for purpose in the face of repeated poor standards of care across a range of services, with a characteristic pattern of responding that aims to evade responsibility and brush any issues under a (by now surely very large and very bulging) carpet [these blogs can be found under the name ‘arbitrary constant’ in the Connor Report].



Southern Health’s Annual Report and Accounts for 2012/13 are publically available on the Monitor website (see here http://www.monitor-nhsft.gov.uk/about-your-local-nhs-foundation-trust/nhs-foundation-trust-directory-and-register-licence-holders/southern-health-nhs-foundation ), so a combination of my nerdy tendencies and waking up at 4am with jetlag in a hotel room with no tea or coffee led to a somewhat feverish set of tweets as I started looking through the annual report. This blogpost is simply an attempt to put some of these tweetish observations into one place, in slightly more measured fashion.

So why look at the annual report for 2012/13? LB was admitted to the STATT unit on 19th March 2013, towards the end of the period the annual report is reporting on. For me, there are two reasons for looking at the report in some detail. First, it might contain useful information on how the Trust was operating up to the time that LB entered the unit. Second, it might give further clues as to how Southern Health NHS Trust characteristically chooses to present itself and its activity, and whether this is consistent with other observations of how they have reacted to bad news about their services.

I write this blogpost as a citizen, and my analysis of this Annual Report is partial in all senses of the word – I focus on information as it relates to services for people with learning disabilities rather than the operations of the Trust as a whole, and I am partial to #justiceforLB.

Empire State Human
Although the annual report doesn’t foregreound this, it is clear that Southern Health has been a Trust going through considerable expansion in a short period of time. The original Trust was Hampshire Partnership NHS Foundation Trust, which became Southern Health when it ‘acquired’ (page 6) Hampshire Community Health Care on 1 April 2011. It then also ‘acquired’ Oxfordshire Learning Disability NHS Trust in November 2012. Southern Health now provides a huge range of services (their list includes Community Services, Child and Family Services, Adult Mental Health Services, Older People’s Mental Health Services, Specialised Services, Learning Disabilities Services, and Social Care Services) over a wide geographical area.

Clearly Southern Trust is following a determinedly expansionist policy very quickly (why, for example, is an NHS Trust looking to expand its social care provider services), and there are legitimate questions about the extent to which any organisation can handle such rapid absorptions of very different organisations with such diverse responsibilities.

Leadership, governance and challenge
In the introduction, there is a quote from Katrina Percy, the CEO of the Trust (on maternity leave at the time the annual report was written), stating among other things that “…We know that leadership directly impacts quality of care…” (page 4). Given the poor quality of care being found in repeated CQC inspections, does this mean that Katrina Percy has accepted that her poor leadership has ‘directly impacted’ the quality of care at Southern Health? As @rich_w has shown in his analysis of her only media appearance to date in response to the independent investigation report, the answer so far seems to be ‘no’, with a clear pattern of shifting the responsibility on to others. The independent report itself clearly shows a pervasive lack of clinical leadership in the Trust and a lack of anyone taking responsibility for LB’s care, a theme repeated in other CQC inspection reports of Southern Health services. 

Scattered throughout the annual report are indicators that all has not been well at Southern Health in terms of leadership, governance and challenge (pages 27-51). For example, during 2012/13 there was an extraordinary turnover of personnel at Board level, which sends danger signals to me about the extent to which the work of the Trust in 2012/13 was subject to proper scrutiny. Over the course of 2012/13, five out of eight Non-Executive Directors left the Board, to be replaced by only three Non-Executive Directors – two Board meetings in the year had only three or four Non-Executive Directors in attendance.

In addition, during 2012/13 the Director of Finance and Corporate Services left the Trust (the former Chief Operating Officer and the Medical Director left the Trust during 2011/12). The Commercial Director and Director of Health Technology Outcomes posts were also downgraded from Executive Director status in 2012/13 as part of plans to reduce the size of the Trust Board (despite an expanding Trust remit).
This adds up to an unstable Board with a cadre of Directors with no longer-term knowledge of the Trust.
Despite (or because of?) this instability, the Board was happy to self-certify to Monitor that it was compliant with Monitor standards on Access to Care: Learning Disabilities for every month in 2012/13 (Quality Report page 50) – a slightly surprising finding given the lack of evidence they have concerning people with learning disabilities throughout the Trust (see below).

There are also hints that the Council of Governors for the Trust was also in turmoil in 2012/13; “In the latter part of 2011/12 we identified issues surrounding our corporate governance arrangements which meant we did not meet the terms of the Trust Constitution”. The Council of Governors “did not include the requisite majority of public Governors or a minimum of one Staff Governor from each staff category” (page 31). Of the 38 places for Governors in the revised arrangements, fully 10 places were not filled during 2012/13.
As an indicator of the active involvement of Governors, try this statement: “The draft Quality Account was sent to Governors on 9 April 2013 asking for comments. No comments, suggestions or amendments to the content or layout were received.”

Money – that’s what I want 
The annual report paints, in its terms, a positive picture for Southern Health’s finances. So, after taking everything into account, Southern Health ran an ‘operating surplus’ of £1.5 million in 2012/13 (page 21). Their financial plans for 2013/14 (page 24) project a 5% cut (sorry, ‘challenging cost improvement programme’) but an increased operating surplus of £4.5 million.

It might also be worth mentioning that the ‘absorption’ of Oxfordshire Disability NHS Trust added £16.3 million to Southern Health’s accounts (page 21), including £8.8 million of ‘Revaluation Reserve’ (page ii of Appendix C).

Personally, the aggregate renumeration of the CEO, Katrina Percy, increased from £160,000-£165,000 in 2011/12 to £175,000-£180,000 in 2012/13 (page 56). There’s a revealing table on page 57 (prefaced by “We are obliged to disclose…”) which states the salary of the highest paid Director in the Trust compared to the median salary of a full-time staff member in the Trust. In 2011/12, the CEO’s renumeration was £165,000-£170,000 compared to a median salary of £26,264 (so the CEO was earning 6.4 times as much as the median staff member in the Trust). In 2012/13, the CEO’s renumeration had gone up to £175,000-£180,000 while the median staff salary had gone down to £25,255 – the CEO was now earning 7 times as much as the median staff member in the Trust. The CEO’s pension pot (in cash equivalent transfer value – page 58) also increased from £306,000 in 2011/12 to £369,000 in 2012/13.

The unbearable invisibility of being a person with learning disabilities in Southern Health
At various points throughout the annual report, Southern Health reports on its success in gaining positive feedback from people using its services. So on page 10, there is a one-page up-front table of Southern Health’s achievements in 2012/13. One of these achievements is “We achieved the 95% target for responses to our patient experience survey”. However, “Information for learning disabilities…is not yet available as some modifications to the survey procedure are required” (Quality Report page 24).

Similarly, 9 out of 10 clinical divisions in the Trust provided evidence of using patient reported outcome measures in their services. “The exception was the Learning Disabilities division which highlighted that it was hard to use such measures with their service users.” (Quality Report page 23). There were no specific plans to develop these in 2013/14.

A Trust target of 100% of service users having a care plan that has been developed with them and/or their main carer did not seem to have been audited in learning disability services (Quality Report page 25).
Possibly due to the recent ‘acquisition’ of Oxfordshire Learning Disability Trust (the name of this former Trust varies slightly throughout the Southern Health Annual Report), the Quality Report states that “Information from the former Oxfordshire Learning Disability Trust is not included in these performance reports as it makes it difficult to show progress against targets originally set by Southern Health” (page 8). Figures for learning disability services are also not provided for medicine reconciliations (“the numbers are very small” Quality Report page 10), and the use of the Patient Safety Thermometer in adapted form for people with learning disabilities was going to be piloted in February 2013 (data anyone?; Quality Report page 13).

It is worrying that most of the major tools cited by Southern Health as markers of their quality are not being used with people with learning disabilities in the service, with no clear plans for ensuring this happens in the future.

Ooh matron!
The annual report makes much of its quality assurance procedures. The annual report is liberally sprayed with statements like “We are committed to using robust evidence as the basis for improving care” (page 11).
As one example, the upfront table of Southern Health’s ‘achievements’ on page 10 states “We achieved our target of matron walk rounds using a structured handover tool”, and this ramblin’ matron appears on a number of occasions as a key plank of Southern Health’s quality assurance processes. However, as we now know (and as Southern Health personnel have effectively admitted in their media appearances) these matron walk rounds were completely ineffective at spotting poor practice and doing anything about it.

I was also surprised to read (page 62) that Southern Health in 2012/13 had conducted no less than 198 internal mock CQC inspections. Again, given what actual CQC inspection reports are finding in relation to some of Southern Health’s services, it is unclear what the point of these mock CQC inspection reports is. Interestingly, most of the recommendations coming out of these mock CQC inspections were around staff training, supervision and support (page 63).

During 2012/13, 17 CQC inspections were conducted, of which three inspections resulted in concerns being raised (page 63). The Trust’s gloss on this is on page 66, “All three services have fully implanted action plans to resolve all issues raised by CQC therefore the Trust declares it’s self [sic] as compliant with the CQC registration requirements.”

Overall, there seems to be a dangerous combination of ineffective quality assurance procedures which are not recognised as such by the Trust. Do these quality assurance procedures really encourage honest and open critique and challenge, with the determination to improve services as a result?

You’ve got to accentuate the positive, eliminate the negative, and latch on to the affirmative, don’t mess with Mr In-Between
Although Southern Health presents their information as showing a consistently positive picture, there are some indicators that might have given a more reflective organisation cause for concern, or at least pause for thought. I also have some concerns about the style in which some of the information is presented,
For example, the Trust received:
·         398 complaints in 2012/13, up from 342 in 2011/12 (a 16% increase)
·         475 concerns in 2012/13, down from 554 in 2011/12 (a 14% decrease)
·         1511 written compliments and letters of thanks in 2012/13, up from 854 in 2011/12 (a whopping 77% increase)
The Trust also state that they implemented a revised Complaints policy – from the figures above, it seems that this revised complaints policy has mainly resulted in a massive increase in compliments!

Another example concerns data from the National Staff Survey (pages 16-17). Among other things, it reports that:
·         90% of Southern Health staff reported errors, near misses or incidents witnessed in the last month in 2012, compared to 96% of Southern Health staff in 2011.
·         74% of Southern Health staff reported working extra hours in 2012, up from 69% of Southern Health staff in 2011.
Neither of these statistics are mentioned in Southern Health’s textual gloss of ‘particular achievements’. The increased staff absence rate (from 4.3% in 2011/12 to 4.6% in 2012/13) is not really mentioned either (page 18).

On page 26, the Trust reports that is has put in place a whistle-blowing policy, but reports no data concerning if it has ever been used.

Appendix A (the sustainability report) contains a minor but revealing example of tricky stats. Page 1 reports the number of assaults to NHS staff in Quarters 1, 2 and 3 of 2012/13 (345, 377 and 380 respectively). It then goes on to say “The total number of incidents represents 66% of the previous year’s total figure indicating a significant reduction in the number of incidents”. So it looks to me like they’re comparing figures for 9 months of the year in 2012/13 to figures for a full 12 months of the year in 2011/12 and claiming a big reduction. If the Trust is prepared to present misleading statistics in this minor example (at a constant rate projected for the whole year, there would still be a smaller reduction from 2011/12 to 2012/13), it severely reduces my confidence in the way they present the rest of their figures.

Another example concerns serious incidents (Quality Report page 15). In 2012/13, 372 serious incidents were reported in the Trust, although following clinical review 36 of these incidents were downgraded, leaving a total of 337 [sic]. The 337 is presented as “a decrease of 5% compared to 2011/12 (353).

From these 337 serious incidents, none were considered to be “Never Events” (the term for serious patient safety incidents considered largely preventable”.

Or try this one – the number of patient safety incidents that have to be nationally reported (Quality Report, page 45). The report says that the number of patient safety incidents nationally reported went down from 5704 in 2011/12 to 5106 in 2012/13. Looks like good news, except that the percentage of these incidents that resulted in severe harm or death increased from 1.26% in 2011/12 to 1.94% in 2012/13. By my calculations, I think this means that the number of patient safety incidents resulting in severe harm or death increased from 72 in 2011/12 to 99 in 2012/13: these figures are not cited in the report.

The picture for people with learning disabilities
Where information is available for people in the Trust’s learning disability services, the overall picture is of a worrying disconnection of the learning disabilities services from the rest of the Trust.

For example, a reduction in patient violent and aggressive incidents resulting in physical injury was reported for almost all areas of the Trust’s services, although there was a slight increase in incidents in learning disability services (Quality Report page 9).

The implementation of an early warning scoring system to spot physical deterioration in patients actually decreased over time in Trust services (including services for people with learning disabilities) (Quality Report page 12).

The Trust set itself a target of 100% of inpatients with learning disabilities to have a physical healthcare assessment – although this target wasn’t met (at 96% in 2012/13) this quality indicator was not planned to be repeated in 2013/14 (Quality Report page 22).

The most detailed picture of Southern Health’s services for people with learning disabilities comes from an audit of 35 patient records in 2013 (compared to 41 patient records in 2012), all of inpatients with learning disabilities in the former Oxfordshire Learning Disability Trust services (Annex 4, pages 66-70). In 2013, 32 out of 35 people audited had a risk assessment recorded, compared to 30 out of 41 people in 2012. However, fully 100% of audited records included the patient’s name and date of birth (hooray!).
Of the following components of the core assessment for inpatients with learning disabilities, the following percentages of audited records actually had them recorded:
·         Mental health:                     85.7% 2013          (55% 2012)
·         Behaviour:                          91.4% 2013          (55% 2012)
·         Physical health:                   91.4% 2013          (57.5% 2012)
·         Social connections:             71.4% 2013          (50% 2012)
·         Housing:                             65.7% 2013          (45% 2012)
·         Finance:                             48.6% 2013          (25% 2012)
·         Occupation/activity:            45.7% 2013          (15% 2012)
·         Employment/training:          48.6% 2013          (20% 2012)
·         Risk:                                  91.4% 2013          (77.5% 2012)
·         Substance & alcohol:         82.9% 2013          (37.5% 2012)
·         Service user strengths:         2.9% 2013            (10% 2012)
·         Carers assessment:            28.6% 2013          (0% 2012)

In most areas the proportion of people having risk assessments is increasing, but in most areas they are still a long way from 100% and in one area (assessing service user strengths) an already very low percentage decreased still further in 2012/13 to 2.9%. Family carer involvement in assessments was also very low in 2012/13, at 22.9%. Although it is difficult to infer a great deal from these data, it looks like learning disability services were being encouraged to increase their record-keeping in a narrow range of areas (mental health, physical health, behaviour, risk) while being much less assiduous about the whole range of other areas of people’s lives that would be crucial in maintaining community, social and vocational connections and working to help people move back out in as short a time as possible. And of course, the independent investigation report and the CQC inspection report show how such record-keeping was chaotic, unrelated to the support of people in the service, and conducted by staff at the expense of spending time with people in the service.

In terms of interventions, the following were recorded in the audit (all these are required by NICE guidelines):
·         De-escalation:                                   54.3% 2013          (43.9% 2012)
·         Managing disturbed behaviour:          77.1% 2013          (48.8% 2012)
·         Physical intervention:                         51.4% 2013          (34.2% 2012)
·         Seclusion:                                            2.8% 2013            (73.1% 2012)
·         Observation levels:                            45.7% 2013          (39% 2012)
·         Physical health:                                  57.1% 2013          (51.2% 2012)

The trends on recorded interventions are in some respects welcome (particularly the reduction in seclusion), although an increase in physical intervention (and what actually happens within the category of ‘managing disturbed behaviour’?) is concerning.

Reflecting the method used for this audit, which did not directly evaluate the quality of services, particularly in terms of the experiences of people who were staying there or their families, the summary of key findings (despite statements such as “It is not always clear whether the absence of Care Plans reflects clinical need”) focuses its recommendations almost exclusively on improved record keeping rather than improving the quality of the services.

Commissioners
One of the levers that service commissioners have is the Commissioning for Quality and Innovation Framework (CQUIN). This is basically where commissioners set targets for an NHS Trust to meet, with extra money attached if they are met. For Southern Health in 2012/13, five commissioners set six different CQUINs. Four of these CQUINS concerned Southern Health’s learning disability (or mental health and learning disability) services, and in total these four CQUINs were worth £2.6 million to Southern Health. For example, Oxfordshire commissioners had a specific CQUIN about learning disability services, including “Improving access to general healthcare for adults with learning disabilities; Service user involvement; Prison liaison; Dysphasia” (I’m assuming this is dysphagia?) (Quality Report page 40).

Clearly, more than one commissioner had the health of people with learning disabilities in their minds when it came to Southern Health. It is also clear that Oxfordshire commissioners had real concerns about the learning disability services being ‘acquired’ by Southern Health, as they state in their feedback statement (Quality Report page 54), which is worth quoting at some length:

“Oxfordshire CCG is pleased to see the Southern Health NHS FT’s approach to quality and look forward to Oxfordshire learning disability services realising the benefits of the integration. We hope that the integration with Southern Health will address the concerns expressed last year by NHS Oxfordshire about the lack of emphasis on continuous improvement of LD services and the lack of information to demonstrate quality.”

“Oxfordshire CCG will work together with Oxfordshire County Council and Southern Health NHS FT to ensure that the learning disability services in Oxfordshire are not isolated from the rest of the Southern Health NHS FT and are therefore able to develop a culture of continuous improvement. OCCG will continue to seek assurance that a robust safety culture is developed and evidenced.”

So commissioners were worried about the quality of the learning disabilities services being ‘acquired’ by Southern Health, and there was a sizeable financial incentive for Southern Health to report to commissioners that these services were OK.

Duck-billed platitudes
The annual report is stuffed full of aims, values, strategic objectives, masses of initiatives that they’re taking very seriously, and so on. Partly this is a function of the somewhat chaotic and fast-moving policy environment that any Trust is having to negotiate at the moment. But having read through it, the lack of connection or consistent thread through this welter of totes initiativeballs is really striking – I didn’t get a clear sense of which bits of the Trust were doing what, who was responsible and how it all worked. One section that really pulled me up was the section on “Our response to the Francis Report” (pages 12-13), mainly because it contained a succinct list of the themes identified in the Francis Report:
·         Negative culture
·         Professional disengagement
·         Patients not heard
·         Poor governance
·         Lack of focus on standards of service
·         Inadequate risk assessment of staff reduction
·         Nursing standards and performance; and
·         Wrong priorities


For all the strategies, briefings, listening exercises and priorities described in the annual report, pretty much all of these themes (and more) were present in STATT when LB was admitted there. This is why more words from Southern Health about learning the lessons, moving on, strategies, actions and all the rest of it sound so unconvincing – this annual report is full of them, but they didn’t mean that LB was treated with the bare minimum of care, expertise and respect which we all expect (and for the most part get) from our NHS. Southern Health are going to have to work a lot harder than more duck-billed platitudes.