An employment gap as big as the Ritz

This post is an update of a post I did nearly a year ago focusing on the paid employment of people with learning disabilities, mainly using social care statistics for 2015/16 that have been recently released.

This relatively short post focuses on paid employment. Although the way these statistics are collected changed in 2014/15, comparisons over time are relatively straightforward. And it’s important to realise that these statistics are only for ‘working age’ (age 18-64 years) adults with learning disabilities who up to 2013/14 were ‘known’ to councils, and from 2014/15 onwards were getting ‘long term support’ from councils (discussed here).

So, the first graph we have below is the percentage of working age adults with learning disabilities in any form of paid employment (no matter how part-time). The percentage is shockingly low, dropping consistently from 2011/12 to 2015/16, and standing at 5.8% in 2015/16. There is also a steady gap in paid employment between men and women with learning disabilities.

This paid employment rate of 5.8% compares to a paid employment rate of 74.5% of the working age population of the UK as a whole in May-July 2016 (79.4% for men, 69.6% for women).

The graph below shows the number of adults with learning disabilities in paid employment from 2008/09 (where the statistics were more dodgy than usual), broken down into those working less than 16 hours per week versus those working 16 hours or more per week. Of those adults with learning disabilities in paid employment, 70% were working for less than 16 hours per week (and 30% were working for 30 or more hours per week), as the graph below shows. This compares to the general population of the UK, where from May-July 2016 8.1% of adults in paid employment were working less than 15 hours per week and 91.9% were working 16 or more hours per week.

And what of those working age adults with learning disabilities getting long-term social services support who are not in paid employment? This information has started to be collected from 2014/15, and is in the graph below.

According to councils, alongside the 5.8% of working age adults with learning disabilities in employment, a further 10.4% of people are not in paid employment but seeking work. Almost half of working age adults with learning disabilities (46.1%) are not in paid employment and are not actively seeking work. And for over a third of people (37.7%), councils report that they do not know what the employment status of the person is.

What does this add up to?

First, the gap in employment rates between adults with learning disabilities and adults generally is absolutely vast, and any policy designed to halve the employment gap between disabled and non-disabled people needs to specifically address the issue of paid employment amongst people with learning disabilities.

Second, adults with learning disabilities are not sharing in any general improvements in the jobs market – in fact, paid employment is continuing to get worse rather than better for people with learning disabilities. Where are access to work, supported employment, further education, public health initiatives with employers, and public sector organisations as employers? Are they in fact getting in the way rather than supporting people into decent paid work?

Third, do the figures on the number of people not in paid employment map on to significant differences in benefits and sanctions regimes between people ‘seeking work’ (13,375 people) and people ‘not actively seeking work’ (59,010 people)? And the number of people with learning disabilities reported in these statistics are a drop in the ocean compared to the ‘hidden majority’ of adults with learning disabilities were are presumably also subject to these benefits and sanctions regimes?

Fourth, the huge number of adults getting long-term support from councils where councils don’t know their employment status is an indicator of councils’ priorities when it comes to employment, and of the shoddiness of their methods for collecting this information. I’ve heard a few fairly hair-raising stories about individual councils which I won’t share here, but let’s just say it doesn’t inspire confidence.

Finally, this is one of those things that I really can’t understand. Many more people with learning disabilities want to have decent paid jobs than are in paid work at the moment, and we keep being told that there are all sorts of jobs out there. We know that a decent, fulfilling paid job can have really positive impacts on people’s lives in all sorts of ways. We know that people with learning disabilities can be effectively supported into stable jobs. So why aren’t councils (with the DWP) jumping to provide cost-effective support to help people into stable employment, rather than re-institutionalising people at greater cost? Why doesn’t education help teenagers with learning disabilities to creatively explore the range of possibilities to suit their strengths and enthusiasms, including entrepreneurial possibilities? Why are people with learning disabilities being caught in this punitive web of contradictory (no) expectations?

Isn’t this the fabled territory of the win-win? Councils may deserve our sympathy for the scale of the cuts they’re having to preside over, but boy they don’t half make it difficult sometimes.

A short history of disappointment

I put this post together a while ago but I'm worrying now that it's too despairing and nihilistic, as it maybe implies that meaningful change is impossible. I don't think I think this, but that would be a blogpost in itself, which I will spare you. Anyway, here it is...

This post is simply a selection of quotes from official government inquiries, policy statements and reviews over the past 40 years or so. See if you can spot any themes…

(quote from Fernando Pessoa, The Book of Disquietude)

“As happened so often in the field of lunacy reform the early efforts of enlightened philanthropists in providing ‘schools’ gave way to the building of remote prison-like establishments to which the outcasts of the Victorian moral code could be consigned.” (HM Government, 1979)

“Gradually throughout the 1920s and 30s the emphasis shifted from containment to active care and by the outbreak of the second world war such features as open wards, community care, mental health social workers, special schools and occupation and training centres were all regarded as appropriate components of the mental handicap picture. Sadly the staff and accommodation shortages imposed by the war meant ‘the return of the locked door, of inactivity, of isolation.’” (HM Government, 1979)

“It seemed that the momentum created by the report of the 1957 Royal Commission was not to be dissipated in the way of so many previous efforts at reform, but the emphasis was on ‘hardware’ rather than ‘care’… Sadly these plans proved to be over optimistic and escalating costs combined with recruitment difficulties meant that improvements were slow to materialise.” (HM Government, 1979).

“In 1971 the expected policy statement was issued in the form of a White Paper – ‘Better Services for the Mentally Handicapped’. The policies outlined in the paper were a direct development from the proposals of the Royal Commission of 1957 but with specific targets (involving a shift in emphasis from hospital to community care to be achieved in the next 15-10 years) set for local and hospital authorities… But the task proved more difficult than had been expected and the onset of the local authority and NHS re-organisations meant that this exercise in co-operation had to be replaced by a new form of joint planning which is still in the process of development.” (HM Government, 1979).

“Achievements since 1971 were reviewed by the Secretary of State for Social Services in a speech to the National Society for Mentally Handicapped Children in February 1975. Inevitably there had been some disappointments to place alongside the undoubted progress which had been made; the two main areas of concern were the slow progress in providing local authority homes and the continued survival of old fashioned attitudes towards mentally handicapped people. The first of these problems was a question of funds and there was some hope of improvement; the second problem was more complex”. (HM Government, 1979).

“The main conclusions of the Report are summarised in Chapter 10. I strongly endorse the final conclusion – that we need to build a pattern of local services and that for this the basic principles of the 1971 White Paper hold good. These principles have recently been re-stated in the Model of Care set out in the Report of the Committee chaired by Mrs Peggy Jay. In the present economic situation we shall not be able to make progress as fast as we would all like. But we must use the resources available to build, as quickly and ingeniously as we can, the services needed.” (Foreword by Secretary of State for Social Services; Department of Health and Social Security, 1980).

“In fact, almost every conceivable approach has been tried in the case of people with behaviour disorder, ranging from national units (special hospitals), through interim regional secure units and locked wards in hospitals to complete integration. As might be expected from what has been said above, none of these approaches has been wholly satisfactory, but in addition to the difficulties mentioned in previous paragraphs, some further disadvantages of special units have become apparent. Firstly, the existence of special units tends to make staff in ordinary units less willing to care for people with even mild disorders of behaviour. With a wide range of provision the opportunities for saying that somebody ought to be somewhere else are increased still further. Secondly, it has proved difficult to get people out of special provision once they have been admitted even if they no longer need to be there. For example, special hospital staff have great difficulty in finding hospitals which are willing to accept special hospital residents who no longer require the degree of security provided there. Clearly, further work is needed on all these matters.” (Department of Health and Social Security, 1980)

“Present uncertainty about the availability of resources inevitably dominates thinking about future policy on services for the mentally handicapped. We believe that further thought should be given to how limited resources can best be deployed, including consideration of the relative contribution of health and social services and the voluntary effort and the voluntary and private sectors can be expected to play” (Department of Health and Social Security, 1980)

“Many of the aims of the 1971 White Paper have been achieved. Very few large institutions remain and there are no children in long-stay hospitals. Services in the community have expanded and developed, and more people with learning disabilities are in work. There are active self-advocacy and citizen advocacy movements and the voices of people with learning disabilities are heard more clearly. But more needs to be done. Too many people with learning disabilities and their families still lead lives apart, with limited opportunities and poor life changes. To maintain the momentum of change we now need to open up mainstream services, not create further separate services.” (Department of Health, 2001).

“Delivering the Government’s ambitious plans for people with learning disabilities will take time, as real change always does. Improving the lives of people with learning disabilities is a complex process which requires a fundamental shift in attitude on the part of a range of public services and the wider local community. This will not be easy. It needs real leadership at both national and local levels, supported by a long-term implementation programme with dedicated resources and on-going action to monitor delivery.” (Department of Health, 2001).

“Valuing People established a number of bodies and mechanisms to help implement its proposals but the biggest criticism of Valuing People has been the failure to deliver it in many areas. The top priority is to deliver the objectives in this strategy so that the Valuing People vision becomes a reality” (HM Government, 2009).

“The scandal that unfolded at Winterbourne View is devastating. Like many, I have felt shock, anger and deep regret that vulnerable people were able to be treated in such an unacceptable way, and that the serious concerns raised by their families were ignored by the authorities for so long. This in-depth review…is about the lessons we must learn and the actions we must take to prevent abuse from happening again… Yet Winterbourne View also exposed some wider issues in the care system. There are far too many people with learning disabilities or autism staying too long in hospital or residential homes, and even though many are receiving good care in these settings, many should not be there and could lead happier lives elsewhere. This practice must end.” (Ministerial foreword, Department of Health, 2012).

“The review has highlighted a widespread failure to design, commission and provide services which give people with support they need close to home, and which are in line with well established best practice. Equally, there was a failure to assess the quality of care or outcomes being delivered for the very high cost of places at Winterbourne View and other hospitals.” (Department of Health, 2012).

“It is also clear that we have not made as much progress as we intended, which is not good enough. The commitment to transfer people by 1 June 2014 from inappropriate inpatient care to community-based settings was missed. This commitment is still right but the process is clearly more complex than we anticipated and the system has not delivered what we expected to achieve when Transforming Care was published.” (Department of Health, 2014).

“But, despite all of this, the scale or pace of change for individuals that we all wanted to see has not yet happened. In fact, in terms of admissions into inpatient units and length of stay, it appears to be business as usual. I have met many families whose stories powerfully illustrate the need for change, who have shown me how damaging it can be for people when hospitals are misused and become people’s homes. While recognising the complexities, I have been disappointed that some commissioners have failed to grasp and act on the urgency of putting in place suitable community provision. We have to go further. We want to consider how we can make sure that the rights, incentives, responsibilities and duties in the system ensure that change is delivered everywhere and no-one can fall through the gaps any longer.” (Ministerial foreword, Department of Health, 2015a).

“All too often the rights of people with learning disabilities or autism or mental health conditions have not been respected fully. I recognise that since the previous Government’s response to what happened at Winterbourne View, there have been some improvements, but they’ve not gone far enough or been made fast enough… Our aim is that people lead as fulfilling and independent lives as they can, and that they have the support to live independently when possible. This requires a step change. Services, and wider society, should first and foremost see the person and their potential.” (Ministerial foreword, Department of Health, 2015b).

(quote from Fernando Pessoa, The Book of Disquietude)

[Update: some dates corrected thanks to Daniel Marsden]

References

HM Government (1979). Report of the Committee of Enquiry into Mental Handicap Nursing and Care (Chairman Peggy Jay): Volume I. London: Her Majesty’s Stationery Office.

Department of Health and Social Security (1980). Mental handicap: Progress, problems and priorities. A Review of Mental Handicap Services in England since the White Paper “Better Services for the Mentally Handicapped”. London: Department of Health and Social Security.

Department of Health (2001). Valuing People: A new strategy for learning disability for the 21^st century. London: Department of Health.

HM Government (2009). Valuing People Now: A new three-year strategy for people with learning disabilities. London: Department of Health.

Department of Health (2012). Transforming care: A national response to Winterbourne View Hospital. London: Department of Health.

Department of Health (2014). Winterbourne View: Transforming Care two years on. London: Department of Health.

Department of Health (2015a). No voice unheard, no right ignored – a consultation for people with learning disabilities, autism and mental health conditions. London: Department of Health.

Department of Health (2015b). Government response to No voice unheard, no right ignored – a consultation for people with learning disabilities, autism and mental health conditions. London: Department of Health.

40 Years On Part 2: The staff

In my previous blogpost, I described some aspects of hospital services for people with learning disabilities 40 years ago, and wondered about continuities and differences from then to what’s happening in ‘specialist’ inpatient units for people with learning disabilities. Fortuitously, in the same year of 1976 a Committee of Enquiry (Department of Health and Social Security, 1979a) commissioned a large-scale survey of 967 nursing staff working in hospitals for people with learning disabilities (Department of Health and Social Security, 1979b). In this blogpost I want to do something similar to the previous post but focusing on staff – what do the results from this survey tell us about how things were 40 years ago, and what would a similar survey of staff in inpatient services today reveal?

From the previous blogpost, it’s important to remind ourselves that in 1976 there were nearly 50,000 people with learning disabilities living in mainly big hospitals (compared to the approximately 3,000 people with learning disabilities in specialist inpatient units in 2015), of which 9% were children aged under 16 years old. In some respects it feels like a different world (as we’ll see by some of the questions asked in the survey), and yet…

Over the daytime (presumably staff were more scarce at night), there was an average ratio of 1 member of staff to 7.3 people with learning disabilities. As far as I know, there is no equivalent information for specialist inpatient units now.

Although only a minority of the people with learning disabilities in hospitals in 1976 were in specialist units equivalent in stated function to specialist inpatient units today, hospital nursing staff in 1976 reported that over a quarter of people (27%) ‘had behaviour problems (for example, being aggressive, destructive or overactive)’. On the day before they were interviewed for the survey, almost a quarter of day staff in hospitals (22%) reported that they had spent over an hour ‘dealing with behaviour problems (e.g. restraining aggressive, destructive or noisy residents)’. In the specialist units of 2015, exactly 27% of people with learning disabilities were also reported to have a ‘behavioural risk severe enough to require treatment’ (NHS Digital, 2015).

What else were nursing staff doing in 1976? Nearly half of them (44%) spent at least an hour the day before the survey engaged in ‘social aspects of care’ (playing games, handicrafts, going for a walk or to the shops, encouraging people to do stuff), over half (56%) spent at least an hour providing basic care, and 13% spent at least an hour giving medical attention or treatment (giving out drugs or looking after people who were physically ill). Almost half of staff (47%) said they liked the social aspects of care part of their job the best – others said it was providing basic comfort/care (28%) or looking after people when they were ill (22%). However, only 11% of staff thought that the most important aim of the service they worked in should be ‘to enable some of the residents to live out of the hospital or hostel within the next few years’.

The survey also asked nursing staff about restrictions imposed on people living in the hospitals. Like the minimum standards I mentioned in the previous blogpost these questions reveal more about low expectations than anything else. How would current inpatient services (bearing in mind that a greater proportion of them impose some level of ‘security’ on people living there) measure up?

For example, in 20% of hospital wards in 1976 no people with learning disabilities were allowed to use the kitchen. In most wards (77%) people would ‘usually be allowed to watch a late TV programme at the weekend’ though, and in over a third of wards (36%) ‘some of the residents get up at a different time at weekends than on weekdays’. The vast majority of wards (82%) had not been locked on the previous day, although 14% of people had stayed indoors all day even though they weren’t ill. In a third of wards (34%) people were asked about what they would like for their meals at least once a month, and in most wards (80%) everyone had their own locker or cupboard. However, not many wards (17%) had meetings with people living on the ward to ‘discuss topics such as meals, bedtimes or other rules’.

Wards where staff wore uniforms were more likely to have more restrictive practices.

One area where the 7 days of action families will recognise little progress is in how hospitals allowed (or restricted) family access in 1976. According to the nurses in the 1976 survey, in almost three quarters of wards (74%) ‘relatives can come at any time in the day or the evening’. For most of the rest (23%), ‘relatives can come when they like if they ring first’, and in only 4% of wards ‘relatives should only come on fixed visiting days or times (but exceptions are made)’.

Perhaps most starkly, the 1976 survey asked a set of pretty pointed questions about the attitudes of nursing staff working in hospitals for people with learning disabilities. I don’t know if a similar attitude survey has been done recently with staff working in inpatient services for people with learning disabilities, but comparing staff now to 1976 would be very instructive.

So, with some apologies for the language used in the survey questionnaire, I’ll finish off with a table of some statements that were put to nursing staff in hospitals and how they responded:

Statement	Percentage of nurses agreeing or disagreeing with the statement
	Agree (slightly or strongly)	Neither agree nor disagree	Disagree (slightly or strongly)
We cannot expect to understand the odd behaviour of patients/residents	26%	9%	65%
A carefully designed training programme for a patient is more important than kindness	33%	13%	55%
Adult patients/residents should be treated like young children	15%	10%	75%
Hardly any severely mentally handicapped children could be properly looked after at home by their parents	43%	9%	48%
Residential homes or hospitals for the mentally handicapped should be sited as close as possible to the community they serve	86%	7%	7%
Mentally handicapped patients who have been discharged from hospitals are often not properly cared for in hostels	37%	37%	26%
More mentally handicapped patients/residents should be sterilised	40%	24%	36%
Mentally handicapped adults should be discouraged from developing sexual relationships	27%	20%	53%

To people with learning disabilities in inpatient services now, and their families, I genuinely wonder how much of the picture revealed by this staff survey 40 years ago feels like ancient history, and how much feels familiar?

References

HM Government (1979a). Report of the Committee of Enquiry into Mental Handicap Nursing and Care (Chairman Peggy Jay): Volume I. London: Her Majesty’s Stationery Office.

HM Government (1979b). Report of the Committee of Enquiry into Mental Handicap Nursing and Care (Chairman Peggy Jay): Volume II: OPCS Survey of Nurses and Residential Care Staff. London: Her Majesty’s Stationery Office.

NHS Digital (2015). Learning Disability Census Report – England, 30^th of September 2015. Leeds: NHS Digital http://digital.nhs.uk/catalogue/PUB19428

40 Years On Part 1: The hospitals

As I’m being increasingly swaddled in the bri-nylon sheets of middle age (comfortable, slightly uncomfortable, OUCH STATIC ELECTRIC SHOCK, and repeat) my sense of historical time is wobbling around more and more alarmingly. Last week can feel like distant history, while 40 years ago can become a blink of a(n?) historical eye [“Now children, imagine a time when people didn’t have computers or mobiles, duvets hadn’t made it to the UK, push-button phones were a bolt from the future, and you had to go to a shop to buy music played by putting a needle on to a big black plastic plate”]

It was in this mood that I went to our spankingly refurbished University library (“Look! A tree! Indoors!”), which still finds room on its gleaming shelves for all sorts of old books, reports and statistical publications. I was looking for things that might give me some way to think about what’s happened to inpatient services for people with learning disabilities in England. Are the supposedly specialist inpatient services still existing the tail-end of the old institutions or are they mainly newer services that have been developed? What clues do we have about what has changed and what may not have changed very much for people with learning disabilities living in specialist hospitals over time?

One way for a nerd like me to think about this is to look at old statistics about services for people with learning disabilities. In this blog I’m going to pull out a few statistics from a report on hospitals for people with learning disabilities in England collected 40 years ago, in 1976 (DHSS, 1980). It’s quite a comprehensive report (and very revealing in its assumptions about services for people with learning disabilities) so I’ll only pull out here some bits and pieces that I think might be relevant to 7 days of action.

The first thing that hit me was the sheer number of people with learning disabilities in hospitals in 1976. As of 31^st December 1976, there were a total of 52,725 ‘available beds’, with 48,959 people living in them. 9% of these 48,959 people were children under the age of 16. It’s also worth reminding ourselves how big many of these places were – by 1976 hospitals were gradually shrinking, but there were still 12 hospitals with over 1,000 people living in each of them.

What were people living in these hospitals doing in 1976? Just over three-quarters of people (75.5%) were ‘occupied’ on the day before the census, categorised in quite revealing ways: 12.0% of people were in full-time education; 18.5% of people were engaged in ‘industrial’ activity, 19.5% of people in ‘handicrafts’, 17.4% of people in ‘social training’, 9.7% of people in ‘hospital service departments’, 1.5% of people in a local authority training (day) centre, and 2.1% of people in open employment outside the hospital. Although inpatient services now classed as ‘specialist’ would argue that they are catering for more ‘complex’ people, I wonder what people placed in inpatient units now are doing on a daily basis? As far as I’m aware, we don’t have an equivalent national picture for inpatient services today.

By 1976 there were also minimum standards in place for hospitals for people with learning disabilities. These minimum standards are in some ways set so low as to reflect how appalling these hospitals were, but again I wonder from the accounts of people and families how many current inpatient services would meet all of these standards?

The first set of minimum standards were about staffing ratios (reports around this time are very exercised about staffing ratios – while high staff ratios are certainly no guarantee of good support, very low staff ratios are probably a guarantee of poor support). The first minimum standard was 1 member of medical staff (i.e. a doctor) per 250 people – out of 61 hospitals with more than 200 residents, 3 hospitals failed this standard. The second minimum standard was 1 nurse per 4.4 people – 3 hospitals failed this standard too. The final minimum standard here was that 3.5-6.1 hours per ‘bed’ per week should be spent on the time of ‘ward orderlies and domestics’ – fully 53 hospitals failed this standard.

The second set of minimum standards was about ‘amenities’ for people living in hospitals. How this was defined I found quite shocking. First, each bed should have a minimum of 50 square feet in ‘night space’, the equivalent of a box room around 7 feet square – 11 hospitals failed this standard. In addition, there should be a minimum of 30 square feet of ‘day space’ per person (there’s no definition of what this ‘day space’ should consist of) – 8 hospitals failed this standard. People living in hospitals were also supposed to have a personal cupboard each (just one per person, mind) – 10 hospitals failed this standard. People were also supposed to have personal clothes (only for each ‘ambulant patient’ though) – again, 10 hospitals failed this standard.

To my mind these minimum standards are in many ways an artefact of an institutional era, but nagging away at me (thinking of Steven Neary’s experience in the ATU about his clothes, for example) is a question about how many inpatient specialist units now would meet all of these minimum standards?

Finally, reading through the lists of hospitals 40 years ago was an eerie experience for me. Some of them have been bulldozed, and some converted into schools, luxury hotels, complexes of executive flats, or NHS Trust HQs. Many of them are still (sometimes under different names) providing specialist inpatient services for people with learning disabilities 40 years on, in 2016. Below is a list of ‘special’ inpatient units or wards listed in 1976 (I’ve kept the original words for how units were described), picked out by me as claiming to provide similar functions to specialist inpatient services now. At the end of 1976 there were 923 people in these specialist units, with an estimated further 700 people with learning disabilities ‘accommodated in the private sector under contractual arrangements with the NHS’ (Department of Health and Social Security, 1980). How many of these places are still going, 40 years on?

Special in-patient units or wards (selected by me, relevant to ATUs) 1976

Location                                            Type                                                      Number of beds

Prudhoe & Monkton                       Investigation & assessment                             35

Prudhoe & Monkton                       Behaviour disorder & psychosis                     22

Northgate & District                       Security (locked)                                             41

Northgate & District                       Security (locked)                                             38

Brandesburton, Cherry Burton       Security (locked)                                             46

& The Beeches  

Aston Hall                                       Emotionally disturbed adolescent                   60

Aston Hall                                       Security (locked)                                             50

Little Plumstead                              Security (locked wards)                                  60

Leavesden                                       Interim Regional Secure Units                      100

Harperbury                                      Security (locked wards)                                  21

The Manor, Epsom                          Security                                                          12

Royal Earlswood, Earlswood          Security                                                          30

Home & Farmfield           

Queen Mary’s                                   Children – mental illness                              26

Tatchbury Mount &                          Locked Ward                                                 43

White House      

Burderop & North View                  Child Psychiatry                                              20

Coleshill Hall &                               Security                                                           75

Over Whitacre House     

Greaves Hall                                     Security (adolescents – locked wards)           30

Mary Dendy                                      Psychopathic/disturbed                                  55

Brockhall                                           Security                                                          79

Calderstones                                     Security                                                           14

Royal Albert                                      Security (locked wards)                                 66

Wayland                                            Behaviour disturbance                                     8

TOTAL                                                                                                                   931

References

Department of Health and Social Security (1971). Better services for the mentally handicapped. London: Her Majesty’s Stationery Office.

Department of Health and Social Security (1979). The facilities and services of mental illness and mental handicap hospitals in England 1976: Statistical and research report series no. 21. London: Her Majesty’s Stationery Office.

Department of Health and Social Security (1980). Mental handicap: Progress, problems and priorities. A Review of Mental Handicap Services in England since the White Paper “Better Services for the Mentally Handicapped”. London: Department of Health and Social Security.

Map of inpatient services for people with learning disabilities in England

This map (produced by the Department of Adult Social Care in Calderdale Council) maps the postcodes of all the services for people with learning disabilities registered with the CQC as specialist hospitals as of August 2016. Many, many thanks to Calderdale for this, and for #7daysofaction for prompting it.

Plastical

For the first week of the #7daysofaction campaign, in April this year, I wrote a series of short blogposts going through some of the statistics about people with learning disabilities in inpatient services in England. For this week’s #7daysofaction you’ll be relieved to know that I’m not going to churn out as many posts (the national position hasn’t changed hugely since April). Instead I want to take a bit of a longer view about where we are – in this post compared to just before the Winterbourne View Panorama programme, and then in other posts looking back 40 years or even longer.

Image from Michael Bernard Loggins (2007). Imagionality: Michael’s lovable fun of dictionaries. Manic D Press: San Francisco.

In this post I’m trying to get a handle on how specialist inpatient services for people with learning disabilities have changed (or not) in the time since the Panorama programme on Winterbourne View went out. Obviously since then there has been a major government and NHS England focus on reducing the number of people in inpatient services. Disappointment has also been expressed about the rate of progress, and more recently worries about the possible re-badging of inpatient services as something else and new services being set up that look a lot like inpatient services.

The Care Quality Commission (CQC) regularly updates a complete directory of the care services it has registered, which is available online. With the help of the CQC, I found their care directory updated on the 9^th May 2011, just before the Winterbourne View programme went out. I also looked at a recently updated care directory for 1 August 2016, to see what had happened over the time period of the Transforming Care programme.

The CQC care directory allows you to apply filters to find the particular kinds of services you’re interested in. I applied the following filters to find services registered as specialist hospital inpatient services for people with learning disabilities:

• Service user band: Learning disabilities or autistic spectrum disorder
• Service type: Hospital services for people with mental health needs, learning disabilities and problems with substance abuse
• Organisation type: Independent health organisation OR NHS health organisation

On 9 May 2011, I found 91 different independent healthcare services fitting these filters, at 83 different postcodes (some organisations had more than one service registered at the same geographical location). These services were being run by 32 different independent healthcare organisations. On the same date, there were 195 NHS healthcare services fitting these filters, at 187 different postcodes, being run by 69 different NHS Trusts. Overall there were inpatient services at 270 different postcodes.

By 1 August 2016, after almost 5 years of the Transforming Care programme, what services fitted the same set of filters? The number of independent sector inpatient services had slightly increased to 97 services at 95 different postcodes, run by an almost unchanged number (31) of independent healthcare organisations. The number of NHS inpatient services had decreased to 176 different services at 174 postcodes, being run by a smaller number (55) of NHS Trusts. Overall there were inpatient services at 269 different postcodes. Because the 2011 database did not have confirmed data on the number of ‘overnight beds’ in their services, I couldn’t make comparisons over time about whether the overall number of inpatient places had changed from 2011 to 2016.

By trying to match postcodes (and names/addresses of services – yes I really am that sad) I tried to investigate the stability of inpatient services for people with learning disabilities from May 2011 to August 2016. I was particularly interested in what happened to services registered as hospitals in 2011 but not in 2016 – by 2016 were they now registered as a different type of service?

Of the 83 different independent sector inpatient services (by postcode) registered as hospitals in May 2011, 60 of them (72%) were still registered as hospitals in August 2016 (including one that was now being run by the NHS). Of the 23 services not registered as a hospital by 2016:

• 13 were not registered as a service for people with learning disabilities.
• 8 were now registered under a social care organisation (often under the same umbrella organisation as in 2011) as care homes, almost all as care homes with nursing registered for people with learning disabilities and people with mental health needs. The total number of places in these services was 200, ranging from 5 places to 126 places.
• 2 were now registered under an independent healthcare organisation (often under the same umbrella organisation as in 2011) as care homes with nursing, with a total of 24 places.

Furthermore, there were 34 independent sector inpatient hospital services for people with learning disabilities that were not registered as such in 2011 but were registered in 2016.

Looking at NHS inpatient services registered for people with learning disabilities in 2011, 126 out of the 187 (67%) were still registered as hospitals in August 2016 (including 2 that were now being run by the independent sector). Of the 61 services not registered as a hospital by 2016:

• 51 were not registered as a service for people with learning disabilities.
• 2 were now registered as NHS community hospitals.
• 4 were now registered under a social care organisation as care homes without nursing, with a total of 38 places.
• 4 were now registered as NHS care homes, 2 with nursing and 2 without nursing, with a total of 32 places.

Furthermore, there were 48 NHS inpatient hospital services for people with learning disabilities that were not registered as such in 2011 but were registered in 2016.

What does all this postcode nurdling amount to? There are a lot of numbers flying around so I've tried to summarise it in one diagram below.

In terms of the number of services registered with the CQC as hospital services for people with learning disabilities, overall the number of services has hardly changed from the Winterbourne View programme to now (although we don’t know if the number of inpatient places has changed, for example if new hospitals are smaller than the ones they've replaced).

There are signs of a steady withdrawal of NHS inpatient services alongside a steady drift towards independent sector inpatient services. There is quite a lot of ‘churn’ in which services are being newly registered as specialist inpatient services – this is likely to reflect both the NHS and particularly the independent sector building or developing/registering new specialist inpatient services. There are also a lot of former specialist hospitals in 2011 (18 of them across the NHS and independent sectors, with a total of 294 places) that have been re-registered as care homes for people with learning disabilities in 2016. Have these services genuinely changed their function and clientele? How many of the potential 294 people in these services were there when the service was ostensibly a hospital in 2011, and how are their daily lives different as a result? A real transformation of care, or plastical? (a highly relevant word from the wonderful book “Imagionality: Michael’s loveable fun of dictionaries” by Michael Bernard Loggins (2007 – Manic D Press: San Francisco).