Thursday, 22 December 2016

The guideline must be built!

Thanks to @ShaunLintern and @SJaneBernal for sharing the new ‘Safe staffing improvement resources: learning disability services’, published by NHS Improvement on 21st December. This blogpost contains some quick first impressions based on a skim reading, mainly in the hope of bringing more people’s attention to this. The resources include an ‘improvement resource’ with appendices, and a separate rapid mixed methods systematic review conducted by the University of West London.

Before getting into the documents themselves, I must say that I have a bit of a bee in my bonnet about the phrase ‘safe staffing’ and safe staffing levels. Among many other things, #JusticeforLB showed us that there is no such thing – Connor Sparrowhawk died a preventable death in a highly staffed unit stuffed with specialists. There may well be levels of staffing below which a service can be guaranteed to be unsafe, but there is no level above which a service can be guaranteed to be safe. And in services for people with learning disabilities, for me this isn’t idle semantic pedantry – commissioners, NHS Improvement and others are always looking for easy proxy measures of ‘quality’ or ‘safety’ so they don’t have to confront the reality of people’s lives in these services.


In looking at these documents, I’m going to start with the rapid systematic review, conducted by Mafuba, Gates and Sivasubramanian – there is a reason for this that will hopefully become clear later. The first thing that struck me (and this applies throughout all the resources) is how staff-centric the review is, presumably based upon the terms set by NHS Improvement. The terms of the review are described as follows:  “The current literature review is more broadly based, regarding the interdisciplinary range of staff working in learning disability services, and needed to consider the sustainability of these staff within a framework of compassionate, safe, effective and efficient care.”

Quite a tough brief, given the state of the published evidence and the time the authors were presumably given to conduct the review. The full brief and the review largely exclude the voices of people with learning disabilities and family members – for example the review actively excluded 9 papers because they focused on the views of adults with learning disabilities (families aren’t even mentioned). This slant towards staff perspectives is exacerbated by the reviewers deciding that “…because of the dearth of empirical studies that specifically addressed the objectives of the current review, opinion papers (published in peer reviewed journals and unpublished) were included.” So the ‘evidence’ admissible to be reviewed contains large slugs of professional opinion, including professionals working in those very inpatient services that are supposed to be drastically reducing under NHS England’s Transforming Care/Building The Right Support.

Reflecting the state (as in ‘Just look at the state of your bedroom’) of the literature, the material included in the review is incredibly heterogeneous. Given there were only 37 publications included in the review, the decision to exclude 17 publications concerning social or community care seems odd, as was the decision to exclude anything published before the year 2000, which excludes a whole strand of UK research relating to staffing levels, staff behaviour and the lives of people with learning disabilities in housing services conducted mainly in the 1980s and 1990s. This strand of research clearly established that, in a range of types of residential care and supported housing for people with learning disabilities in the UK, there was no relationship between higher staff ratios and better lives for the people living within them. A higher staffing ratio was no guarantee of a more active life, more engagement in people’s local communities, or more choice (Felce & Emerson, 2005). And of course, in inpatient services higher staff ratios may be a consequence of service failure, in a self-fufilling vicious spiral (a person becomes more distressed by being put into an inpatient service, the answer is more staff to follow them around and restrain them, the person becomes more distressed as a consequence, the answer is…).

Experts by experience?

The findings are unsurprising and (initially) pithily expressed: “No empirical evidence was located that directly relate to sustainable safe staffing.”

But of course, stopping there would derail the whole machinery of guideline production. A guideline must be produced, and minor details like a complete lack of evidence upon which to base a guideline can’t be allowed to get in the way (I’ve been involved in similar processes so this is a criticism of myself as much as anyone else). What this means is that the production of these guidelines becomes a hermetically sealed jar of professional opinion, created from ‘experience’: “While there is little previous research and a lack of strong evidence in this area, many professional publications identify experience-based strategies and indicators related to safe and sustainable staffing.”

Is this a problem? After all, professionals are the experts, right? Well, particularly when it comes to inpatient services for people with learning disabilities, it’s not as simple as that.

First, inpatient services have been around for a long time, and are highly resourced with psychiatrists, clinical psychologists and others for whom research is supposed a part of the skillset. If this is the case, why isn’t there a substantial research literature already on staffing in inpatient services? 40 years ago, there were national minimum standards set for doctor : resident ratios in learning disability hospitals (1 doctor per 250 residents, 3 out of 61 big hospitals failed this standard), and for nurse : resident ratios (1 nurse per 4.4 residents, 3 hospitals failed this standard too). Now there is no equivalent data for inpatient services across England, and very little work investigating what happens in inpatient services, with what staff, with what effect in terms of the lives of people using them? Would independent sector and NHS services routinely reveal what staff (of what type, at what grades) are actually working in inpatient services day by day, or is that now in the realm of ‘commercially sensitive’ information for fear of exposing to commissioners and the public gaps between what’s being paid for and what’s actually happening?

Second, most obviously, a lot of bad stuff happens to a lot of people with learning disabilities in inpatient services, either actively at the hands of staff (seclusion, restraint, antipsychotics and rapid tranquilising medication) or through neglect/inattention (most obviously, people dying). Despite five years of national policy to close a large proportion of these inpatient services, there is little progress, partly due to the resistance of many of the professionals employed in these services, who invoke ‘complexity’ with little evidence to back them up. I’m not convinced that professionals who preside over these services should be the only voices at the table when it comes to guidance on staffing.

Good things are good things

Coming to the ‘improvement resource’ itself (finally!), I must admit to being a bit bemused. I’ve only had a quick look, but I’m struggling to identify much content that sets a clear direction. I find it useful applying  Simon Hoggart’s law of the ridiculous reverse to this stuff, “When I hear resounding stuff like this I mentally reverse it, since it's a good rule that if the opposite of something is absurd it wasn't worth saying in the first place.”

Try it on the following quotes. This one, from the introduction, invokes ‘complexity’ again – note here that this ‘complexity’ is all about fragmented service systems (which presumably someone could do something about if it’s that much a problem, rather than assuming this is a fixed feature of the landscape?):
“Sustainable safe staffing in learning disability services must take account of the complex nature of the care models and the number and skill mix of professionals and agencies involved in meeting the healthcare needs of people with a learning disability.”

“Workforce planning should be an integral part of an organisation’s strategy.”

On a quick read, the whole document is like this, expressing the view that good things should be good things, without any recognition of why services aren’t doing these good things already.

Within the resources available…

There is a very characteristic rhetorical push and pull throughout the document, that gives with one hand and takes away with the other. Take this quote from Section 2: Right Staff:
“There must be sufficient and sustainable staffing capacity and capability in learning disability settings to provide safe and effective care to patients at all times. These decisions must take account of the financial resources available, so that high-quality care can be provided now and on a sustainable basis”.

The ‘Right skills’ section starts with this statement on context:
“New models of transformed and integrated care will rely on healthcare professionals providing expert care to more people at home ‘living in the community’ alongside families, personal assistants and social care providers. Learning disability services need to respond to the increasing complexity of need. Clinical intervention should always be based on ensuring safety, minimising risks, reducing health inequalities and improving health outcomes within the resources available.”

I don’t really know where to start with this statement. Why is ‘living in the community’ in quotation marks? What are these ‘new models of transformed and integrated care’ – the vast majority of adults with learning disabilities already live with their families or in supported housing/residential care, where they should be getting some support from community teams? What are the ‘risks’ to be ‘minimised’, and what about supporting people to lead fulfilling lives?

And in the most sinister turn, always the phrase at the end that negates the rest of the sentence -  ‘…within the resources available’. What if the resources aren’t available? Who is responsible for making sure the resources are available, and what happens if they don’t? I find it alarming that a resource on safe staffing seems to imply that safe staffing is conditional on the resources being available.
A number of recommendations in the document that could be positive are also written in ways that make me worry about their consequences in a ‘within the resources available’ world. So, for me there is some attraction in the recommendation of having flexible banks of staff to support people in times of crisis without them having to be shipped off to inpatient units, but at the same time is this a route to a zero hours staff cadre who only react to crises rather than proactively support staff to reduce the chances of going into crisis in the first place?

Similarly, the ‘Right place, right time’ section is almost wholly about reducing inefficiencies and costs. It makes sense to make the experience of getting support as smooth as possible for people, but the section is framed in terms of staff productivity rather than what support will work best for people with learning disabilities. Quotes from a focus group of people with learning disabilities are included at various points in the document, but the content of the document doesn’t match what people with learning disabilities are saying they want/need.

Don’t mention the nurses

Another consistent theme throughout the resource is to not mention professional groups or professional training wherever it can be avoided, presumably with the aim of deprofessionalising the workforce to the cheapest level possible. This, from section 3 on ‘Right skills’:
“We need to build an adaptable contemporary workforce to respond to the changing world as a profession, using our resources wisely, while ensuring that careers remain attractive and accessible to all. Our ability as a profession to adapt and innovate is critical to achieving high-quality care in the right place and at the right time. By modernising, we can shape a workforce that is fit for purpose for the next decade and beyond and positively demonstrate care, outcomes and experience for those for whom we care.”

What the quote above seems to mean is a route to de-professionalisation. Given the stranglehold of some professions on the direction of services for people with learning disabilities, this might not always be a bad thing. But the ‘generic role templates’ mentioned in the resource are not reassuring, providing five templates from ‘Support Worker’ (level 3) to ‘Advanced Practitioner’ (level 7) with very long lists of largely unspecific professionally derived core competencies which do not include the core competencies of staff that people with learning disabilities and families are looking for.

This avoidance reaches some sort of peak in the discussion of liaison roles. There is some consistent evidence that specialist learning disabilities liaison nurses, in both acute general hospitals and primary care settings, have a positive impact on the healthcare provided to people with learning disabilities. However, the resource stops short of any requirements or even strong recommendations with respect to liaison nurses, and the document itself studiously calls them liaison practitioners, avoiding any mention that they are overwhelmingly nurses:
“Commissioners and workforce planners should consider the importance of providing these posts in a range of services including primary healthcare, acute physical healthcare, mental healthcare and forensic/prison healthcare.”

In the ‘right staff’ section, the document says this:
“It is predicted that there will not be enough learning disability nurses and other professionals with experience of learning disability in the future. NHS organisations must promote this career choice and closely monitor those entering graduate placements as well as considering alternative routes to qualification.”

There aren’t enough now, and the number of learningdisability nurses in the NHS has been plummeting in recent years. No mention of those publicly available facts – who are these ‘other professionals’ going to be in the future?

Bizarrely, the section on learning disability inpatient services doesn’t talk about staffing at all, simply restating other documents’ recommendations about the number of inpatient places ‘needed’.

How will they know?

The final major section of the resource concerns the ‘Safe staffing dashboard’, asking crucial questions about how to check that services for people with learning disabilities are ‘safe’ and what to do with that information. My heart sank at the ‘dashboard’ word though, heavily conditioned by my reading of years’ worth of Southern Health Board papers for #JusticeforLB. These Board papers had dashboards a gogo, some of them measuring (or mismeasuring) exactly the proxy indicators for ‘safe staffing’ recommended by NHS Improvement here. Southern Health said they were doing all the walk-rounds and other ‘assurance’ practices presented here, and yet we know from the Mazars report how the practices of Southern Health were the very opposite of ‘safe’.

Below is the list of ‘measures that matter’ (yes, the Draft watermark is on the final publicly available version) – are these really going to get to the bottom of unsafe staff practices when the management are determined to look the other way?

And what are NHS Improvement going to do about it? For some years, NHS Improvement have had a good set of six questions about reasonable adjustments to health services for people with learning disabilities. Every 3 months, all NHS Foundation Trusts report to NHS Improvement if they’re meeting all six of the criteria set by these questions. The last time any data were made available (through a Parliamentary question – NHS Improvement do not publish these returns) every single NHS Foundation Trust reported that they were compliant with all six criteria – which is a patent nonsense. Do NHS Improvement check? Not as far as I can see. They are no doubt ‘assured’. The ongoing train wreck of NHS Improvement’s role in Southern Health, not to mention how they ‘handled’ the Mazars report, gives me precious little confidence that they will be fearless champions for patient safety. They will be much more interested in the finances, and use this guideline as another stick with which to beat NHS Trusts.

What does it all mean?

I’ve only had a skim read and I’m probably being a little unfair. One thing that worries me is that from a near complete lack of evidence, there is now a ‘thing’, an ‘improvement resource’, which will assume a reality far beyond its foundations. There are consistent themes of deprofessionalising the workforce, under the threatening shadow of ‘within the resources available’, on the hermetically sealed basis of professional ‘expertise’ in the very services that government policy says should be closing. There is no firm guidance here at all, with a shrugging of the shoulders about the dangerously fragmented service systems within which people live and staff work. The world of people with learning disabilities shrinks to one of being protected. And firm ideas about how to find out about safe/unsafe staffing and governance are there none.

So beyond the fact that there has to be a guideline, I’m struggling to see what impact this ‘improvement resource’ will have. Sorry – I think I need a mince pie.


Felce D & Emerson E (2005). Community living: Costs, outcomes, and economies of scale: Findings from UK research. In R.J. Stancliffe & K.C. Lakin (eds.), Costs and outcomes of community services for people with intellectual disabilities (pp. 45-62). Baltimore: Brookes.

Monday, 28 November 2016

Housing benefit?

A week ago (and many thanks to Donna Glover for pointing me to this) the Government began an open consultation (responses in by 13thFebruary folks) on the future of funding for supported housing across England,Wales and Scotland.

This is a massive issue, particularly in terms of how much housing benefit goes into supported housing landlords’ coffers when there is a serious shortage of affordable housing for rent.
As part of the consultation, the government has published an evidence review conducted by Ipsos Mori, Imogen Blood & Associates, and the Housing and Support Partnership, using a mixture of official statistics, datasets, surveys, and extrapolation 

Although it’s somewhat ticklish territory given the scale of the cuts being scythed from public funding to support for people with learning disabilities, it’s long been my contention that there is still a lot of public money being spent to institutionalise people with learning disabilities rather than to really support people to live the lives they want. And a big chunk of money I haven’t known about is housing benefit – a chunk of money that has recently probably been getting bigger as local authorities try and shunt some of their social care accommodation costs on to housing benefit by re-registering residential care as supported living.

Although there is in this blog my usual dose of finger in the air calculation, so extreme caution is needed about this stuff, the evidence review gives us some basic figures to work on. So – here we go…

The evidence review says that there are 38,500 working age adults with learning disabilities in England (i.e. aged 18-64 years) in some form of supported housing. This is almost a quarter (24%) of all working age adults in England in supported housing. Of these 38,500 people, most of the supported housing is provided by housing associations (24,500 people), followed by charities (5,500 people) and local authorities (2,000) – ‘other’ (either private landlords or housing where the commissioners don’t know who the landlord is because the housing and support is so enmeshed) accounts for 6,500 people. This doesn’t quite add up to the amounts reported by local authorities in national statistics but anyway, let’s press on…

Information from private rented providers in England suggest that, on average, people with learning disabilities in supported housing are paying £104 per week in rent and £59 per week in service charges. If there are 38,500 people in supported housing, this adds up to a grand total of £208.2 million per year in rent and £118.1 million per year in service charges for people with learning disabilities. If housing benefit is paying for this, then this would add up to £326.3 million in housing benefit for supported housing for people with learning disabilities.

The evidence review also asked as part of their survey how much local authorities in England were funding for the support elements of supported housing over and above rent and service charges, and they came up with a total figure of £640 million per year for people with learning disabilities (equivalent to £320 per person per week for support).

This is a very quick blogpost just really to alert people to the report and the consultation so I haven’t had time to digest it, but some very quick thoughts:

  1. For working age people with learning disabilities, this suggests that almost a billion pounds a year (£966.3 million) is spent on supported housing, with around a third of this coming from housing benefit.
  2. Even adding up the rent, service charge and support costs, supported living is still considerably cheaper to the public purse at £483 per person per week than residential care for working age adults with learning disabilities at £1,336 per person per week.
  3. Following on from point 2), Rochdale and other local authorities planning re-institutionalising routes take note.
  4. Also following on from point 2), and perhaps heretically, it’s quite possible that supported housing support is too cheap, meaning that for many people living connected lives that they want to live becomes effectively impossible and people become prisoners in their own homes housing units.
  5. Last thing – separating the funding sources of housing benefit from local authority funding of support has not resulted in the meaningful separation of housing and support for many people. It has also not stopped a commercially driven drift away from people living in their houses in the middle of their streets, to ‘specialist’ complexes promoted by organisations grabbing a bigger share of the ‘market’. The money needs to be meaningfully controlled by people who can put it to good use, rather than leaving people at the mercy of landlords’ interests while being blamed for their rents being expensive.

Thoughts on this would be very welcome – I may well have made more mistakes than usual!

Tuesday, 1 November 2016

Where have all the nurses gone?

This post updates and extends a blogpost I did last year about trends over time in the learning disability nursing workforce in England. There has been a lot of noise made about the importance of learning disability nurses in helping people with learning disabilities get decent access to decent healthcare. On the principle that an organisation’s priorities are often shown in where it puts its money, what are the priorities of those training and employing nurses in the NHS?

So, what’s happening to the workforce of nurses working specifically with people with learning disabilities in England? NHS Digital, as part of their suite of NHS workforce statistics, provide monthly information on the number of Whole-Time Equivalent (WTE) nurses in the categories of Community Learning Disabilities nurses and Other Learning Disabilities nurses. The graph below shows this information for the month of May from 2010 through to 2016.

For community learning disabilities nurses, there were 2,571 WTE nurses in May 2010, dropping steadily to 1,973 WTE nurses in May 2016 (a drop of 23% in 6 years), with numbers stabilising from 2014 to 2016. The decrease for ‘other’ learning disabilities nurses (presumably in large part working in general hospitals, although they may also be in NHS specialist inpatient units or other services) is even bigger and more sustained, dropping from 2,916 WTE nurses in May 2010 to 1,529 WTE nurses in May 2016 (a drop of 48% in 6 years). Overall, this is a drop of 36% in the number of WTE learning disability nurses over 6 years.

Similar figures are also available for specialist learning disability nursing support staff working in the NHS. The graph below shows that the number of WTE community learning disability nursing support staff dropped from 1,805 in May 2010 to 551 in May 2016 (a drop of 56% in 6 years). The number of ‘other’ learning disability nursing support staff also dropped, from 8,962 in May 2010 to 4,255 in May 2016 (a drop of 53% in 6 years). Overall, this is a drop of 55% in 6 years.

The equivalent figures for WTE learning disability psychiatrists working in the NHS are in the last graph below. The numbers here have hardly changed, from 450 in May 2010 to 432 in May 2016 (a drop of 4% in 6 years).

When looking at this, it’s worth bearing in mind that this workforce information is for NHS services only – we don’t know how many nurses and nursing support staff are working with people with learning disabilities in third sector/private services (particularly specialist inpatient services, which have increased their, um, market share, shall we say, over this time period).

In some ways it’s unclear what is going on here. Among other things, it could be a combination of deprofessionalisation of staffing within NHS services, a shift towards generic rather than specialist nursing roles, shifting service patterns (away from NHS inpatient services towards independent sector inpatient services, for example), and of course straightforward cuts to nursing roles.

At the start of this post I said that one way to track an organisation’s priorities is to see where it invests its money. This was too simplistic – whatever the NHS is now, it’s certainly not one organisation. Whatever the Department of Health and NHS England may say about the importance of learning disability nursing, the number of nurses who are trained and employed isn’t under their control. It’s ultimately down to Health Education England, over 200 Clinical Commissioning Groups, approaching 250 NHS Trusts, and almost 8,000 GP practices. Not to mention the almost 900 independent sector organisations providing healthcare (figures from the NHS Confederation). In a reversal of Aneurin Bevan’s dictum Whitehall can drop all the bedpans it wants, but there’s no reverberation in hospital corridors. 

Tuesday, 18 October 2016

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.

Friday, 14 October 2016

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]


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 21st 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.

Wednesday, 12 October 2016

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:

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
A carefully designed training programme for a patient is more important than kindness
Adult patients/residents should be treated like young children

Hardly any severely mentally handicapped children could be properly looked after at home by their parents
Residential homes or hospitals for the mentally handicapped should be sited as close as possible to the community they serve
Mentally handicapped patients who have been discharged from hospitals are often not properly cared for in hostels

More mentally handicapped patients/residents should be sterilised
Mentally handicapped adults should be discouraged from developing sexual relationships

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?


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, 30th of September 2015. Leeds: NHS Digital

Tuesday, 11 October 2016

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 31st 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

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.