Friday, 14 June 2019

Unexpected item in the inspection area: The CQC and abusive service cultures


I’ve just been listening again to the hearing of the Joint Parliamentary Human Rights Committee, where two members of the Care Quality Commission (CQC) are grilled about their lamentable (to put it charitably) ‘inspection’ practices in relation to Whorlton Hall and St Andrews. One of the repeated refrains of the CQC people (apart from blaming everyone else) is that their inspection methods perhaps aren’t very good at identifying abusive behaviour in inpatient services, due to pesky staff ‘colluding’ in trying to hide their abusive practices (my interpretation and gloss of their words…) and even more pesky inpatients ‘inconsistently’ sometimes reporting abusive practices and their fear of speaking out while at other times reporting to inspectors that they were being treating with dignity. Meanwhile, both people who have spent time as inpatients and family members of people who have been or currently are inpatients say time and time again that when they raise allegations of abuse to the CQC there are ignored or given the brush-off.

I am beyond words in expressing how I feel about this session and the (in)action of the CQC. In this blogpost I just want to very briefly describe some relevant knowledge about service cultures in services for people with learning disabilities that I’ve come across, particularly relating to inpatient services. Then I will take a look at the extent to which I think CQC inspection arrangements are geared up to find abusive service cultures in inpatient units. Some of this is taken from a quick piece of work I did for NHS Improvement a couple of years ago, but the interpretation is all mine…

Firstly there has been a whole programme of research by Christine Bigby, Julie Beadle-Brown and colleagues looking at positive and negative cultures in housing services for people with learning disabilities. For a positive culture there are four overarching dimensions of culture when people living in a house are being supported well: the culture in the house is cohesive, respective, enabling and motivating.

Christine Bigby, Julie Beadle-Brown and colleagues, from careful work spending a lot of time in people’s homes, have drawn out 5 things that distinguish a positive place from a negative place: 1) that staff supporting people actually show the same values that are espoused by senior managers and service brochures; 2) that staff recognise their common humanity with the people they support, and everyone gets on with each other, rather than people being seen as ‘not like us’; 3) that staff recognise that they are there to support the person to live the life they want to live, rather than doing things ‘for’ people; 4) that the people being supported come first, rather than being supported in ways that suit the staff; 5) that staff are open to new people and new ideas, rather than resistant.



This way of describing positive and negative cultures makes a lot of sense to me. What the eagle-eyed among you will have noticed though, is that they don’t describe aspects of cultures that are more actively toxic and abusive. Peter Oakes, Dave Marsland and Caroline White have been working for some years now on identifying and monitoring indicators of the potential abuse of people with learning disabilities in a range of places.

These authors have identified six clusters of early indicators in identifying service cultures and environments in which people with learning disabilities may be at risk of abuse. Three of these clusters are not about service cultures as such, but they are extremely important as things to look out for:
1) The behaviours of people with learning disabilities (changes in people’s behaviour and needs; consistency of people’s behaviour according to the member of staff they are with or the place they are in; people harming themselves or bullying others, showing fear, or engaging in sexualised behaviours)
2) Service design, placement planning and commissioning (agreed care not being provided; lack of available options for people in the service; service design and placement planning)
3) Fundamental care and the quality of the environment (poor support for people with health problems; service dirty and in poor state of repair; people not supported with personal hygiene).

Three clusters identifying early indicators of potential abuse are about service cultures – they can be thought of as extremes of the negative cultures I’ve mentioned above, but that we need to be specifically vigilant about.
1)      The decisions, attitudes and actions of managers at all levels within residential services which may place residents at risk, consisting of 2 clusters (management of the home and the organisation; staff recruitment, deployment and shift patterns). More practical details about what you might look out for are in the table below
















2) The behaviours and attitudes of staff that may place residents at risk, consisting of 7 clusters (staff knowledge, skills and actions; staff values and attitudes; staff lack of choice, misuse of power, how the service runs; staff boundaries and inappropriate relationships; staff inconsistency and lack of reliability; staff getting important ideas wrong; staff attitudes and responses to abuse). More practical details about what you might look for are in the two tables below (there’s a lot to look out for here!)


















3) Isolation, consisting of 2 clusters (isolation of individuals; defensiveness and lack of openness). Again, more practical details about what you might look for are in the table below.



There is a lot of detail in these tables (in very tiny writing), but I think it’s important to include them because it shows practically how it can be done, and the team producing these indicators have worked with services to spot these cultures early on and do something about them.

These are also the kinds of things that people with learning disabilities in inpatient units and family members are rightly sensitive to and pick up on really quickly. Looking at a few reports from the ever excellent Bringing Us Together and from the National Development Team for Inclusion, people and families time and again discussed toxic, abusive inpatient service cultures where they were spotting exactly the same indicators I’ve just outlined above – the tables below show some of the things people and families said.













This is a lot of stuff, much of it in tiny writing in tables. I think that detail is important to show that:
1)      Looking out for indicators of abusive service cultures is more/different than looking out for not very positive service cultures.
2)      People have been working for a long time on practical ways to spot abusive service cultures, and the experiences of people and families show that they are really good at spotting when something might be seriously wrong.

CQC inspections, though, aren’t set up to proactively examine and find abusive service cultures in inpatient or other places where people with learning disabilities are living (I know I’m referring exclusively to people with learning disabilities rather than also talking about autistic people in this blog, because the stuff I’m talking about has focused on people with learning disabilities, but there is no reason why this doesn’t apply to autistic people in these places too). How?

First, they like paperwork and ‘evidence’. The way that people (including people with learning disabilities, families, and I suspect many visiting professionals) pick up these cultures can often be dismissed by regimes like the CQC as ‘soft’, based on intuition, and not within the realm of ‘proper’ evidence. Many people who try and alert the CQC report this sense of what they have to say being dismissed. Well – what all these people experience is real and is tapping into something vital that the CQC have admitted they are missing.

Second, in principle they wait until things are so bad they are unignorable, rather than seeking to proactively spot abusive cultures early and nip them in the bud.

Third, in inspections of specialist mental health services (including specialist inpatient services for people with learning disabilities and/or autism), the CQC inspects services using their standard framework (Care Quality Commission, 2015a, 2015b). The inspection process is designed to ask five fundamental questions.  In Appendix B to the provider handbook (Care Quality Commission, 2015b) each of the five questions is broken down into between three and seven Key Lines of Enquiry (KLOEs), with associated prompts for each one. The five fundamental questions are as follows. Are services:
1)      Safe? By safe, we mean that people are protected from abuse and avoidable harm (5 KLOEs).
2)      Effective? By effective, we mean that people’s care, treatment and support achieves good outcomes, promotes a good quality of life and is based on the best available evidence (7 KLOEs).
3)      Caring? By caring, we mean that staff involve and treat people with compassion, kindness, dignity and respect (3 KLOEs).
4)      Responsive? By responsive, we mean that services are organised so that they meet people’s needs (4 KLOEs).
5)      Well-led? By well-led, we mean that the leadership, management and governance of the organisation assures the delivery of high-quality person-centred care, supports learning and innovation, and promotes an open and fair culture (5 KLOEs).

Although the Safe? Question should be proactively looking out for early indicators of abusive cultures, the Key Lines of Enquiry questions are much more focused on looking for positive and negative service cultures, rather than taking seriously how to find an abusive service culture. Care and Treatment Reviews in some ways are similar, with the added proviso that their marginal status means that they are even less likely to uncover and be able to do something about abusive service cultures.

No big conclusion really, except to say that for the CQC to express surprise at their inspection regimes not being able to find abuse in inpatient service cultures is patent nonsense. Given the serial nature of abusive practices being exposed (largely by the media) in inpatient units for people with learning disabilities and autistic people, a responsible regulator should have put its house in order well before now. All the stuff I’ve mentioned here is readily available to an organisation like the CQC, and people would have bent over backwards to help. My rating:
·        Safe: Inadequate
·        Effective: Inadequate
·        Caring: Inadequate
·        Responsive: Inadequate
·        Well-led: Inadequate



For those of you interested, here's a list of references of stuff I've referred to in this blog.


Beadle-Brown J, Bigby C, Bould E. Observing practice leadership in intellectual and developmental disability services. Journal of Intellectual Disability Research 2015; 59, 1081-1093.

Bigby C, Beadle-Brown J. Culture in better performing group homes for people with intellectual disability at severe levels. Intellectual & Developmental Disabilities 2016; 54, 316-331.

Bigby C, Beadle-Brown J. Improving quality of life outcomes in supported accommodation for people with intellectual disability: what makes a difference? Journal of Applied Research in Intellectual Disabilities 2018; 31, e182-e200.

Bigby C, Knox M, Beadle-Brown J, Clement T, Mansell J. Uncovering dimensions of culture in underperforming group homes for people with severe intellectual disability. Intellectual & Developmental Disabilities 2012; 50, 452-467.

Bigby C, Knox M, Beadle-Brown J, Clement T. ‘We just call them people’: positive regard as a dimension of culture in group homes for people with severe intellectual disability. Journal of Applied Research in Intellectual Disabilities 2015; 28, 283-295.

Bringing Us Together. Stronger Together – Family Event. 2016a. Bringing Us Together.

Bringing Us Together. Stronger Together – Families talk about their experience of independent hospitals. 2016b. Bringing Us Together.

Care Quality Commission (2015a). How CQC regulates specialist mental health services. Provider handbook. London: Care Quality Commission.

Care Quality Commission (2015b). How CQC regulates specialist mental health services. Appendices to the provider handbook. London: Care Quality Commission.

Clare ICH, Madden EM, Holland AJ, Farrington CJT, Whitson S, Broughton S, Lillywhite A, Jones E, Wade KA, Redley M, Wagner AP. ‘What vision?’: experiences of team members in a community services for adults with intellectual disabilities. Journal of Intellectual Disability Research 2016; early online.

Gillett E, Stenfert Kroese B. Investigating organizational culture: a comparison of a ‘high’ – and a ‘low’ – performing residential unit for people with intellectual disabilities. Journal of Applied Research in Intellectual Disabilities 2003; 16, 279-284.

Hatton C, Rivers M, Mason H, Mason L, Emerson E, Kiernan C, Reeves D, Alborz A. Organizational culture and staff outcomes in services for people with intellectual disabilities. Journal of Intellectual Disability Research 1999; 43, 206-218.

Hogg J. Protecting adults with intellectual disabilities from harm and abuse: international perspectives. Journal of Policy & Practice in Intellectual Disabilities 2013; 10, 187.

Humphreys L, Bigby C, Iacono T, Bould E, Humphreys L. Development of a scale to measure organisational culture in group homes. Journal of Intellectual Disability Research 2016; 60, 685.

Marsland D, Oakes P, White C. Abuse in care? The identification of early indicators of the abuse of people with learning disabilities in residential settings. The Journal of Adult Protection 2007; 9, 6-20.

Marsland D, Oakes P, White C. Early indicators of concern in residential support services for people with learning disabilities: The Abuse in Care? Project. 2012. Hull: University of Hull Centre for Applied Research and Evaluation.

Marsland D, Oakes P, Bright N. It can still happen here: systemic risk factors that may contribute to the continued abuse of people with intellectual disabilities. Tizard Learning Disability Review 2015; 20, 134-146.

National Development Team for Inclusion. Informing the service model: A report about the experiences of people with learning disabilities and families. 2015. Bath: NDTi.

NHS England. Care and Treatment Reviews: Policy and guidance. 2017. Leeds: NHS England. https://www.england.nhs.uk/publication/care-and-treatment-reviews-policy-and-guidance/ [accessed 26 June 2017].

Quilliam C, Bigby C, Douglas J. Paperwork in group homes for people with intellectual disability. Journal of Intellectual & Developmental Disabilities 2015; 40, 286-296.

White C, Holland E, Marsland D, Oakes P. The identification of environments and cultures that promote the abuse of people with intellectual disabilities: a review of the literature. Journal of Applied Research in Intellectual Disabilities 2003; 16, 1-9.

Tuesday, 21 May 2019

The Great Disdain



I’ve been trying to digest the welter of reports dropping about autistic children and children with learning disabilities being incarcerated, autistic adults and adults with learning disabilities being put into solitary confinement, and people with learning disabilities being denied a quarter century of life compared to other people. These have all been rushed out in advance of a BBC Panorama programme due to air tomorrow, presumably to share out the outrage between them and get their media lines sorted. I’ve done a lot of blogposts going through the details of these kinds of reports before, and there will be some of that in this typically over-long post, but through these repeated cycles of reports, media frenzy, ‘lessons learned’ and ‘action plans’ (not to mention the blogposts I write) I’ve come to a sense of pointlessness about what these are achieving.

Without wanting to get overly Wolfensberger about this, I can’t help feeling that we’re at a point where those in a position to champion the human rights and flourishing of people with learning disabilities and autistic people to the benefit of society as a whole fundamentally wish that people with learning disabilities and autistic people just didn’t exist. This isn’t the same as saying I think those people wish people with learning disabilities and autistic people were dead, it’s just that people with learning disabilities and autistic people are not thought of at all, made invisible, and vaguely thought of as burdens and obstructive to the ways that politicians and others want society to run (unless they can be turned into exploitable commodities for profit). When the human consequences and end-points of this disdain become visible, through concerted and exhausting efforts on the part of people, families and the media, there is an almost visible shrugging of the shoulders and exasperated side-eyeing in responses to ‘fix’ the ‘problem’. I’m now seeing this all over the place (might just be my less than rose-tinted glasses though):
·        Introduce pre-natal screening for Down syndrome.
·        Design an entire school system modelled on a minor 1950s public school, forget completely about disabled children, then idly wonder why these children are excluded and off-rolled from mainstream schools and having an increasingly rough time.
·        Talk about social care for adults exclusively in terms of older people – if mentioning younger adults with learning disabilities or autistic younger adults always mention the huge proportion of social care spending going on these groups of people and the increasing ‘burden’ on local authorities they represent. At the same time, ensure that the number of adults with learning disabilities and autistic adults getting adult social care does not keep pace with the number of people who might need social care.
·        Decide not to have a comprehensive national policy or strategy about supporting people with learning disabilities, and disband advisory groups of people with learning disabilities and family members.
·        Have a punitive benefits system that enforces people with learning disabilities and autistic people into a perpetual cycle of ‘looking for work’ activities, while ignoring cost-effective ways of supporting people into and maintaining actual paid employment.
·        Degrade ways of supporting people that would encourage people’s lives to flourish.
·        Ignore international conventions that the UK has signed and ratified (e.g. the UN Convention on the Rights of Persons with Disabilities), and contemptuously fend off UN monitoring of how the UK is doing with respect to the rights of disabled people.
·        Have health services that frequently discriminate against people with learning disabilities and autistic people, sometimes breaking the law to do so.

Look at the consequences of all this disdain – people being denied a quarter century of life compared to other people, people not being educated to equip them for a flourishing life, people on antipsychotic medication and incarcerated, sometimes from an early age, much less of a chance for living, loving and party-going. And (after delay and obfuscation), come up with woeful ‘fixes’ to deal with the ‘problem’, rather than stopping to consider the underlying reasons why people can end up in the situations they do. All these reviews, reports and activities (including ones announced today by the CQC, the Department of Health and Social Care and NHS England/NHS Improvement) increasingly seem to me part of a cycle of protracted fending off. Just get through the next news cycle and it will all die down.

Minimise

Even when charged with making the situation of people with learning disabilities and autistic people visible, the ways that organisations do this show the traces of this urge to invisibility, this fending off of the reality of people’s lives and deaths. Some examples:

As with previous reports (Mazars, last year’s Leder report), both the CQC and NHS England moved the publication dates of the CQC and Leder reports (in this case moved forward) to minimise the attention that people would pay to them – previously both organisations (and a government minister) had said that the reports couldn’t be published now because of, variously, elections coming up or the need for ‘scrutiny’.

Both the Children’s Commissioner and CQC reports talk extensively about people’s “vulnerability” and “complex needs”, as if these are fixed properties of individual people that in part have caused their incarceration (services and professionals are at a loss as to how to deal with such complexity…). Vulnerability is a function of a threatening environment, and complex needs are a statement of a lack of understanding.

There is across these reports both a fetishisation of numbers to construct “the scale of the problem”, and a concerted attempt across service providers and NHS England to minimise them. Don’t get me wrong (and I would say this, wouldn’t I?), numbers can be useful as part of a picture, but to turn an arbitrary number into a target does all sorts of violence to the intention underpinning that target. More fundamentally, presenting “the scale of the problem” can implicitly endorse the idea that if smaller rather than larger numbers of people experience fundamental abuses of their human rights, that is somehow OK – if the CQC report had found five people in long-term segregation would that be OK? One person? One person experiencing human rights abuse is one too many, and the fact that this is both possible and happening (with the whole panoply of specialist services, commissioning, policy, regulation and so on) is the logical end-point of a systemic (which, as Mark Neary points out, is a depersonalising cloaking term for a bunch of people making decisions) wish that people with learning disabilities and autistic people didn’t exist.

All over the place, the numbers generated and relied on in these reports are themselves the end-product of deeply discriminatory practices designed to minimise the ‘problem’. For example, the CQC report says that service providers identified to them 62 people with learning disabilities or autistic people in long-term segregation, but on their visits so far (which are not complete) the CQC found another 9 people in long-term segregation where the service provider apparently hadn’t realised that this was their situation. Four out of the 89 providers the CQC contacted didn’t bother to reply – to a review commissioned by the Minister for Health and Social Care and being done by the regulator.

The Assuring Transformation (AT) dataset, which NHS England uses to derive ever more gerrymandered claims of percentage reductions in the number of people with learning disabilities or autistic people in inpatient units, can be subject to all sorts of methods to reduce the numbers without necessarily making any fundamental changes:
·        re-registering specific inpatient units as residential care homes;
·        building ‘step-down’ or similar places in the grounds of psychiatric hospitals or other similarly remote places that don’t count in the numbers;
·        re-classifying people in inpatient units so they are no longer identified within the service as being autistic or having a learning disability;
·        making sure that people coming into inpatient systems get a different label rather than one that would put them into the AT figures;
·        for some providers, simply report far fewer people with learning disabilities or autistic people in inpatient services within AT than are reported in the other dataset of people in mental health inpatient services generally, the MHSDS. In February 2019, 115 people with learning disabilities or autistic people were reported in AT to be in Cygnet inpatient services, compared to 295 people in the MHSDS. Equivalent figures for Elysium Healthcare are 85 people reported in AT compared to 360 people in the MHSDS; for St Andrews it’s 180 people reported in AT compared to 360 people reported in the MHSDS;
·        discharge a person to an inadequate place to live (tick the AT community discharge box), then when it breaks down leave generic mental health services (not usually counted in AT) or the criminal justice system to pick up the pieces.

So it’s no surprise that for February 2019, AT reports that there were 2,310 people with learning disabilities or autistic people in inpatient services at the end of the month, compared to 3,605 people reported in the MHSDS. And even these figures are a minimisation – including people admitted to inpatient units during the month, some of whom leave again in the same month, AT reports that 2,475 people spent some time in an inpatient unit in February 2019, compared to 4,445 people reported in the MHSDS. Across the course of a year, how many people with learning disabilities or autistic people spend some time in an inpatient unit (whether ‘specialist’ or a generic mental health inpatient unit)? We don’t know.

Both the CQC and Children’s Commissioner reports make much use of information on ‘restrictive interventions’ (including restraint, ‘long-term segregation’ and other practices). This is reported by mental health service providers in the MHSDS and again, horrific though the reported figures are, they are a severe under-reporting. Most of the major independent sector providers of inpatient services for people with learning disabilities or autistic people report zero (yes, zero) restraints being used with anyone with learning disabilities or autistic people in their services. The organisations reporting zero restraints in February 2019 (when the CQC review had already started and was widely publicised) include: Cambian Childcare Ltd; Elysium Healthcare; Jeesal Akman; Partnerships in Care; The Priory Group; and The Huntercombe Group. Extreme invisibility.

Alongside these frantically minimised numbers, all the reports tell stories of individuals. As Katherine Runswick-Cole has pointed out, there is an ethical issue in getting people to tell their stories, publicly, when there is no prospect of fundamental change. Over time I’m also becoming increasingly wary of senior people congratulating themselves on their capacity to be ‘moved’ (I confess I have done this myself) by people’s stories if there is no evidence of respect, equality or action.

And as for the Leder report, when it comes to reporting the deaths of people with learning disabilities or autistic people, the urge to deny, minimise and deflect is equally strong. The original Confidential Inquiry reported that the deaths of 37% of people with learning disabilities were amenable to decent quality health care. In the Leder report (which is a voluntary programme relying on reviews conducted by staff who are not independent of the services where people died), reviewers reported that 8% of people had received care that fell so far short of good practice that it significantly impacted on their well-being or directly contributed to their cause of death, and in only 1.9% of completed reviews had reviewers concluded that the person’s death was potentially avoidable. This is without mentioning the fewer deaths of people with learning disabilities being reported to coroners (31% vs 43% of people generally), the 26% of people with learning disabilities being on antipsychotic medication at the time of their death, the 15 people for whom learning disability was written on their death certificate as an underlying cause of death, or the 19 people for whom learning disability or Down syndrome was written as the rationale for a Do Not Resuscitate Order.

The things that dreams are made of

For me, this disdain needs to be tackled head-on. This might be big, but I don’t believe it’s especially complicated – if anything, it might be less complicated than what currently exists to try and pretend people with learning disabilities and autistic people don’t really exist. The conditions that make discrimination more likely also need to be fundamentally addressed. Ways for all children to be educated and spend time together, in whichever ways work for every child and work for those close to them. People with learning disabilities and autistic people taking on positions of power. Education and economics that support everyone to flourish in whatever ways suit. Or, in the words of the Human League:

Everybody needs love and adventure
Everybody needs cash to spend
Everybody needs love and affection
Everybody needs two or three friends

These are the things
These are the things
The things that dreams are made of

And, if things have got worse, this to me means that they are not inevitable and can change for the better. Pie in the sky, typical academic waffle remote from the realities and ‘complexities’, and so on. Yes, and unashamedly so. I hope to be a tiny part of the big, broad social movement that Sara Ryan and Katherine Runswick-Cole have said is needed. To use a horrible phrase, if I’m a human, then I have skin in this game.

Friday, 29 March 2019

Transforming Care report card 4: Leaving inpatient units

This blogpost is the final one of four looking at the Transforming Care programme through the prism of the national statistics regularly produced by the ever excellent @NHSDigital, updating a series ofblogposts I wrote towards the end of 2017.

The first blogpost looked at statistics on the number of people being admitted to inpatient services, and where they were being admitted from.

The second blogpost looked at when people were in inpatient units, how far were they from home and how long were they staying in inpatient services.

The third blogpost looked at planning and reviews for people within inpatient services.

This final blogpost will focus on the number of people leaving inpatient services (charmingly called ‘discharge’) and what is happening leading up to people leaving. Getting people out of inpatient units has arguably been the major focus of activities under the Transforming Care banner. Again, at this point the impact of the Transforming Care programme should be visible in the number of people getting ready to leave, how well people’s plans to do so are developing, and how many people are actually leaving to places outside inpatient services.

The first and most obvious question is whether people in inpatient services have a planned date to leave (I will pick up on the complications of what ‘leaving’ actually means later in this post). The graph below shows the proportion of people in inpatient services with a planned date for transfer, from March 2015 to September 2018 (according to Assuring Transformation data). There was a worrying drop in the proportion of people with a transfer date in 2016, but by September 2018 well over half of people (58%) had a planned transfer date, the highest proportion recorded to date.

 
A date might be ‘planned’, but how distant in time is the planned transfer? The graph below shows this information according to Assuring Transformation data, from March 2015 through to September 2018. Consistent with the earlier graph, the proportion of people without any planned date to leave at all increased hugely in 2016, with the position recovering throughout 2017 and 2018. By September 2018, 13% of people had a planned transfer date within the next 3 months, 17% had a planned transfer date between 3 and 6 months ahead, and 10% of people had a planned transfer date between 6 months and a year ahead. For 9% of people their planned date to leave was between 1 and 5 years ahead, and for 6% of people their planned date to leave was overdue.



So far, the statistics look like there is a push from Transforming Care that is having an impact on the number of people with plans to leave, although this push does not seem to have massively accelerated as the finish line for the policy comes closer. Do we know anything about the plans themselves?

Well, if people are leaving the inpatient unit to go home in some sense then my expectation would be that the person’s local council should be aware of the plan to leave. The graph below shows information from Assuring Transformation based just on those people with a plan to leave – for this group of people, are councils aware of the plan? Over time, the proportion of people with a plan where their council is aware of that plan continues to drop substantially – from over two thirds (69%) in March 2015 and March 2016 to less than half (49%) in September 2018. Just as worrying is that in September 2018, for two fifths of people (40%) it wasn’t known whether the council was aware of the plan or not, a huge increase from March 2015 (7%). At the very least this suggests that the close working between health and social care envisaged as central to Transforming Care is less than universal.
  

There are other signs too of potential haste in making plans to leave. The Assuring Transformation statistics report whether a range of people (the person themselves, a family member/carer, an advocate, the provider clinical team, the local community support team, and the commissioners) have agreed the plan to leave. For those people with a plan to leave, the graph below reports the proportion of their plans that have been agreed by different people, from March 2016 to September 2018. Over time, the proportion of plans agreed by anyone and everyone potentially involved has plummeted. Only two-fifths of plans (40%) had been agreed by the person themselves in September 2018, compared to almost two thirds of people (64%) in March 2016. Even bigger drops are reported for the proportion of family/carers (from 60% to 35%) and advocates (from 64% to 38%) agreeing the plans.

By September 2018, transfer plans had been agreed by a minority of provider clinical teams where the person was supposed to be moving to (from 83% in March 2016 to 45% in September 2018), a minority of local community support teams in the area the person was supposed to be moving to (from 69% to 41%) and a minority of those commissioners who are reporting the information the graph is based on! (from 83% to 45%). To what extent are these actually feasible and sustainable plans that will result in a better life at home for people in inpatient services, and what are their chances of breaking down?



The final graph in this blogpost series is one of the most important – how many people have actually been transferred from inpatient services, and where have they gone? The graph below adds up monthly ‘discharges’ from inpatient services in the Assuring Transformation dataset for three periods of time; a year from October 2015 to September 2016, a year from October 2016 to September 2017, and a year from October 2017 to September 2018. It’s also one of the most complicated graphs in this series, so I’ll go through it in a bit of detail.

The first thing to say is that overall the number of people ‘discharged’ from inpatient services has increased, from 2,045 people in 2015/16 to 2,265 people in 2017/18.

Of the people who have been ‘discharged’, in 2017/18 almost a quarter of people (535 people; 24%) moved to independent living or supported housing. Another fifth of people (490 people; 22%) moved to their family home with support, making nearly half of everyone ‘discharged’ from inpatient services.

Where did everyone else go? For almost a quarter of people in 2017/18 (525 people; 23%) their ‘discharge’ was actually a transfer to another inpatient unit, confirming the picture of ‘churn’ of people passed around inpatient services found elsewhere in this series. Hundreds of other people (375 people; 17%) moved into residential care. Given that some inpatient services have re-registered themselves as residential care homes with the CQC and a panoply of 'step-down' and other services are registered as care homes, it is unclear to what extent people are leaving an inpatient service to move somewhere more local and homely, moving somewhere very similar to where they were, or not actually moving at all.

In 2017/18, there were also another 235 people (10%) who moved to an ‘other’ location – again it is unclear what these ‘other’ places are, but are they wildly different from where people were moving from? Finally, 50 people (2%) were in the puzzling category of ‘no transfer currently planned’ while having apparently already been transferred.

There are also signs of some changes over time in where people are being ‘discharged’ to. Increasing numbers of people are being ‘discharged’ direct to another inpatient unit, or to ‘other’ places that may well be varieties of relatively restrictive places described as ‘step-down’, ‘rehab’ or similar. Fewer people are moving to independent living homes or to residential care, and increasing numbers of people are moving to supported housing or back to their families with some form of added support.



So in this final post in the series, there are definite signs that Transforming Care is exerting pressure for more people to have plans to leave their current inpatient services, and almost half of those people who are leaving are moving to independent or supported living or back to the family home. There are real worries about the feasibility and sustainability of some of these plans, and the extent to which many people ‘leaving’ inpatient services are actually leaving for something radically different or being churned around a system that doesn’t call itself an inpatient service system but looks mighty similar to the people living within it. The fact that for almost a quarter of people being 'discharged', they are actually being moved to another inpatient unit, is to my mind something of an indictment of the inpatient service 'system' and Transforming Care's lack of fundamental impact upon it.

Thursday, 28 March 2019

Transforming Care report card 3: Planning within inpatient units


This blogpost is the third of four looking at the Transforming Care programme through the prism of the national statistics regularly produced by the ever excellent @NHSDigital, and updating a series of blogposts I wrote towards the end of 2017 on the same issues.


The second blogpost looked at when people were in inpatient units, how far were they from home and how long were they staying in inpatient services.

This blogpost will focus on what the statistics are telling us about planning within inpatient services, just using statistics from Assuring Transformation. As Transforming Care moves towards a close (or not), its effects should be felt through the inpatient care plans people have, whether people’s needs are being regularly reviewed, and whether people are having regular, effective Care and Treatment Reviews (CTRs).

The first graph below shows the details of care plans for people according to inpatient services, from March 2015 through to September 2018. By September 2018, almost a third of people (31%) were labelled ‘not dischargeable’, up 10% from 21% in March 2015. The proportion of people with an active treatment plan but no plan to leave has stayed pretty static over time (41% of people in September 2018). The proportion of people actively working towards a plan to leave with a plan in place has dropped over time, from over a third (35%) in March 2015 to under a quarter (23%) in September 2018. Delayed transfers of care have gradually crept up over time, and are now standing at 5% of people in September 2018. From these figures, it is impossible to tell whether these changes are due to changes in what inpatient services are doing, or changes in who is in inpatient services. For example, if Transforming Care is being effective in supporting ‘dischargeable’ people (nice phrase) to leave inpatient services, then the proportion of ‘undischargeable’ people (even nicer phrase) left in inpatient services will go up.

But it does mean that, towards the end of Transforming Care, there are well over a quarter of people (28% in September 2018) in inpatient services when, according to their care plans, they don’t need to be there.

For everyone in inpatient services, reviews should happen regularly. The graph below shows how long ago people in inpatient services had had their last review, from March 2015 to September 2018. The graph generally shows that things seemed to get worse in 2016 but improved again in 2017 and was maintained through 2018. By September 2018, well over a quarter of people (29%) had had a review in the past 12 weeks, and almost a quarter (23%) between 12 weeks and 6 months ago. However, almost a further quarter (22%) last had a review between 6 months and a year ago, and another 23% had last had a review over a year ago.

 A particular form of review introduced by Transforming Care as a way to bring in independent voices to challenge inpatient services is the Care and Treatment Review (CTR). The graph below reports the last time people in inpatient services had had a CTR, from October 2016 to September 2018. The graph shows that the vast majority of people in inpatient services have had a CTR at some point (91% of people in September 2018), and that this coverage has increased from 70% of people in October 2016. Perhaps one concern is that 14% of people last had a CTR more than a year ago, a proportion that has stayed fairly consistent over time.



The graph below shows when people are next scheduled to have a CTR. Again, there are improvements from October 2016 to September 2018, where the proportion of people with no scheduled future CTR dropped from over half (55%) to around one in six people (17%). For a further 15% of people in September 2018 the date for their scheduled CTR had passed without a CTR happening, a proportion that is gradually creeping up.



Overall there are signs that more people in inpatient services are having both regular reviews and Care and Treatment Reviews. There are still large numbers of people in inpatient services who have not had any sort of review for a long time, however, and there are still well over a quarter of people in inpatient units whose care plan says they don’t need to be there.

Tuesday, 26 March 2019

Transforming Care report card 2: How far are people from home, for how long?

This blogpost is the second of four, updating a series of blogposts on various aspects of Transforming Care I wrote towards the end of 2017. The first blogpost in this updated series looked at who was being admitted to inpatient units, and where they were being admitted from. This second blogpost will focus on two aspects of what happens to people in inpatient services, how far people are from home and how long they are in inpatient services. They use two sources of information, both provided by NHS Digital; the Assuring Transformation dataset and the Mental Health Services Dataset (MHSDS). Rather than going through the differences between them again (and the differences are important) there’s a short description in the previous post which is worth having a look at.

One of the main things highlighted by Transforming Care is having crisis and inpatient services close to home. The graph below reports information on the ‘distance from home’ of people in inpatient units, as reported in the Assuring Transformation dataset. The graph firstly shows that there has been virtually no change in how far people are from home, from November 2016 to February 2019. Secondly, the graph shows that a lot of people are a very long way from home. In February 2019, substantially fewer than half of people (1,015 people; 43%) were less than 50km from home (hardly a short distance). Almost one in five people (430 people; 19%) were in inpatient units between 50km and 100km from home, and a further one in five people (485 people; 21%) were in inpatient units more than 100km from home. Thirdly, for one in six people (360 people; 16%) commissioners cannot even report how far they are from home, a proportion that has stayed consistent for well over two years.



The graph below shows equivalent information from the MHSDS, which with its inclusion of people in short-term mainstream mental health inpatient units (including for ‘respite care’ – see the last blogpost), presents a very different picture. However, the trends over time are concerning. Most obviously, the recording of this information is getting worse rather than better over time – for a third of people (33%) in December 2018 the distance from ‘treatment’ (interesting difference in wording compared to Assuring Transformation) was unknown, compared to 22% of people in August 2017. This makes any other trends over time (which mainly show a reduction in the number of people living less than 10km away from ‘treatment’ over time) difficult to interpret, as it could be that local people in inpatient units for short periods of time (e.g. for respite) are less likely to have their home postcodes recorded in the MHSDS.



Another important aim of Transforming Care is to reduce the length of time that people spend in inpatient units. The graph below shows how long people have been in their current inpatient unit according to Assuring Transformation statistics, from March 2015 through to September 2018. There are very gradual but steady trends over time towards a greater proportion of people being in their current inpatient unit for shorter lengths of time, although in September 2018 14% of people had been in their current inpatient unit for 5 years or longer (so far).


As I mentioned in the previous post, these is a lot of evidence that substantial numbers of people are moved around different inpatient services without ever leaving the inpatient service system. Assuring Transformation also reports information on how long people have been continuously within inpatient services (not just how long they have been in their current unit). The graph below shows this information from March 2015 to September 2018. The extent of people being transferred around can be clearly seen; in September 2018 well over a third of people (37%) had been continuously in inpatient services for 5 years or longer, a proportion that has hardly changed from March 2015.



Finally, Assuring Transformation also reports the average length of time that people have been in their current inpatient unit, and continuously in inpatient services. The graph below shows that people were on average in their current inpatient unit for under 3 years, with this length of stay gradually falling from March 2015. In contrast, the total length of time people have been continuously in inpatient services has increased slightly and is now standing at an average 5 years 6 months.



What does this mean? First, it’s obvious that inpatient services have not become more local as Transforming Care has ‘progressed’, with Assuring Transformation reporting that two fifths of people are more than 50km from home and this information simply not being reported for many people. The information on how long people are staying in inpatient units reflects the increasing ‘churn’ of people between inpatient units without seeing the outside world, with people still on average spending 5 and a half years continuously in some form of inpatient unit. Reducing distance from home and length of stay were both supposed to be central to Transforming Care – as far as we can tell, these have not improved and may in some respects be getting worse.

Monday, 25 March 2019

Transforming Care report card 1: People being admitted to inpatient units

Towards the end of 2017 I did a five-day series of blogposts (you lucky people…) on the progress of Transforming Care in reducing the number of people with learning disabilities and autistic people in inpatient units (see here for the first of the five), according to the available statistics. As Transforming Care does or does not come to an end at the end of March 2019, I thought it might be useful to update four of these five blogposts. Leaving aside the issue of the overall number of people in these inpatient units (I’m confident this will be covered elsewhere), I want to look again at some of the other statistics that give us some clues about what has been happening with Transforming Care and what we might expect to find in the near future.

These blogposts will focus on information produced publicly by NHS Digital from two datasets. First, the Assuring Transformation dataset – for this dataset, health service commissioners provide information (sometimes retrospectively) on the number of people with learning disabilities and autistic people in specialist inpatient services and on various aspects of what is happening with or to people. I’ve collected some of the information into six-month or yearly blocks, and some of the information I report for every three or six months rather than every month (both you and I would not survive that amount of information…). This means that most of the information goes up to September 2018 or at the latest December 2018. Second, the Mental Health Services Dataset (MHSDS – also available via this web address), which reports information collected by mental health service providers concerning people identified by them as a person with learning disabilities or an autistic person – this has been published monthly starting more recently than the Assuring Transformation dataset and is less detailed about processes. In different ways both datasets are partial – Assuring Transformation does not include a lot of people in mainstream mental health inpatient units, and some big independent sector inpatient service organisations are not yet reporting to the MHSDS.

As with the previous series, these four blogposts will focus on:
  • Who is going into inpatient services?
  • How long are people spending in inpatient services?
  • What planning and review is happening in inpatient services?
  • What is happening about people leaving inpatient services, and where are they going?

So – much of the focus of the Transforming Care programme has been on getting people out of inpatient units, but the slower than planned reduction in the overall number of people in these units suggests that there are still substantial numbers of people coming into these units. What do the statistics tell us about this?

Every month, the Assuring Transformation statistics report how many people have come into an inpatient unit (called ‘admissions’) according to commissioners. The graph below adds these together across three different years, October 2015 to September 2016, October 2016 to September 2017, and (you guessed it) October 2017 to September 2018), so we can see the number of people coming into these units and whether they have changed over time.

The first thing the graph shows us is the overall number of admissions to inpatient services is still increasing, from 1,810 admissions in 2015/16 to 1,980 admissions in 2017/18. The second thing to notice is that an increasing number of admissions (the red chunk) are actually transfers from other hospitals (mainly other inpatient services of various types), with a sharp increase in 2017/18 up to over a quarter (28%) of all admissions. This churn around the inpatient service system is something that will feature in later posts too, and it seems to be increasing rather than decreasing. The third thing I want to mention is that more than one in six admissions (the lilac chunk, 18% in 2017/18) are readmissions, where people had previously been in an inpatient service less than a year before – the number of these people are increasing over time too. Finally, the purple chunk shows that just over half of admissions to inpatient services (55% in 2017/18) are people who have not been in an inpatient unit for at least a year (or maybe never).

Information from the MHSDS tells a very different story. The graph below shows information on how many times people with learning disabilities and autistic people have been admitted to inpatient units/wards, for just six months (April to September 2018). The most obvious thing is the headline figure of 9,950 admissions in six months, a rate of people being admitted 10 times higher than that reported in the Assuring Transformation dataset. What does this vastly higher headline figure include? First, it includes a lot of admissions of inpatient units for the purposes of ‘respite care’ – there were 2,745 occasions (28% of admissions) when people were admitted for respite care in these six months, and for almost all of these episodes of respite care (94%) the person was in and out of the unit for a short period of time, within the same calendar month (other people may also have been in for short periods of time but just crossing the boundary of a calendar month). In the same six months there were 7,205 admissions to inpatient units ‘not for respite’ purposes. Just over half of these admissions (3,750 admissions, 52%) were for people who went in and out of the unit within the same calendar month. The MHSDS is clearly providing a completely different picture to the Assuring Transformation dataset, mainly because it is recording a huge number of people going into and out of (mainly general mental health) inpatient wards for short periods of time and for a range of reasons (are inpatient units the most appropriate place for ‘respite care’?). Transforming Care as a programme seems to be paying no attention to the experience of these large numbers of people with learning disabilities and autistic people.



What kinds of places are people being admitted to inpatient services coming from? The graph below shows this information from the Assuring Transformation statistics, for two one-year blocks, October 2016 to September 2017 and October 2017 to September 2018. Even from one year to the next, the picture is changing.

In 2017/18, 40% of people (760) were admitted from their ‘usual place of residence’, down sharply from half of people (51%; 935 people) in 2016/17. In 2017/18, getting on for half of all people admitted to inpatient units (49%; 935 people) were admitted from other inpatient and/or hospital services, particularly from ‘acute beds’ (which presumably includes people being transferred from mainstream mental health inpatient services) – sharply up from 2016/17 (37%; 680 people). A further 100 people (5%) in both 2016/17 and 2017/18 were admitted from ‘penal establishments’ and similar numbers of people (125 people; 7% in 2016/17; 115 people; 6%; in 2017/18) were admitted from residential care services.



Overall, it seems like the pressures are continuing to build, for which inpatient services are being used as a response, with an increasing number of people being ferried straight from one inpatient service to another or being re-admitted after a short time out of an inpatient service. While it might be a marker of progress for Transforming Care that fewer people are coming into inpatient units from their ‘usual place of residence’, the increasing number of people being churned around the inpatient system and being re-admitted into inpatient services are clear markers that inpatient services are not doing their job and the support that people are getting on leaving inpatient units may not be enough. The MHSDS dataset also presents a worrying picture seemingly ignored in the Transforming Care programme, of large numbers of people going into mental health inpatient units, often for short periods of time. Does this help people, or is it another sign of a potentially increasing lack of decent community support? These are questions that Transforming Care, or any potential successor, needs to urgently deal with.