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).

Through the round window

This week, for the first time the MyNHS website published some information on services for people with learning disabilities in England, broken down to the level of individual Clinical Commissioning Groups (CCGs). The relevant webpage is here – although I found it quite slow to load, it did work for me in the end.

Although knowledge is not necessarily power, any steps towards transparency are to be welcomed, and although I don’t know this I guess the hand of Dominic Slowie behind it. Dominic will be much missed as National Clinical Director for Learning Disabilities. In this blogpost I simply want to describe what information has been published online to help people understand what is (and isn’t) there when looking up their local CCG area.

There are two types of information published online here (a much wider set of information about people with learning disabilities broken down by local authority area in England is available here).

The first is the number of people with learning disabilities in specialist inpatient services commissioned by the CCG. This is written as the number of people in inpatient services per million total adult population registered with GPs in the local area, so that areas with very different population sizes can be compared. Overall, the median number of people in inpatient services per million adult population (if you ordered the 209 CCGs from lowest to highest, the median is the number reported by the CCG in the middle) was 62 people in inpatient services per million adult population. As the graph below hopefully shows, the variation is huge. Apparently, if you’re a person with learning disabilities in Swindon or Wiltshire (where 16 people with learning disabilities per million adult population are in specialist inpatient services) you are nearly six times less likely to be put into an inpatient service than if you live across Cumbria and the North East (92 people per million).

Before marching to your local CCG offices with pitchforks (if you can find them - they’re quite often hidden in business parks nowadays) there are a couple of caveats to bear in mind about this information. The first is that more than half of the people with learning disabilities in inpatient services (and attributed in the online information to individual CCGs) are not actually commissioned by CCGs. The latest NHS Digital Assuring Transformationdata for July 2016 reports that 1,175 people with learning disabilities (47%) were in inpatient services commissioned by CCGs and 1,345 people (53%) were in inpatient services commissioned by NHS England ‘specialist hubs’ (these are regional ‘specialist’ commissioners who tend to commission more secure and forensic services). So while I’m sure there are close working relationships between CCGs and these specialist hubs, it’s important that NHS England share in this transparency. This level of detail is available (for each CCG area, how many people with learning disabilities are in inpatient services commissioned by CCGs and by these hubs) (Table 10 here, if you’re interested) but is not in the online information.

A second caveat is that information is set against individual CCGs when it has been provided collectively. For example, all the CCGs across Cumbria and the North East report the same number of people per million (92, the highest numbers in the dataset) – presumably some individual CCGs have lower numbers and some have even higher numbers. Finally, given the pressure CCGs are under from NHS England to cut inpatient service numbers, it’s important to bear in mind the ‘Daisy Unit’ phenomenon. The Daisy Unit is a newly built 9-bed unit in the grounds of a psychiatric hospital, for people with ‘complex’ learning disabilities to ‘receive specialised services’. But apparently it’s not an inpatient unit, it’s a ‘specialist residential home’. Coincidentally it’s been commissioned by Wiltshire CCG, an area with the joint lowest inpatient numbers in the country according to this online information.

The second type of information reported online is the percentage of people with learning disabilities identified in GP registers who had an annual health check. The median figure for this was 46.5%, so just less than half of people identified as a person with learning disabilities with their GP got an annual health check in the ‘average’ CCG. Again, the graph below shows huge variation between CCGs. Apparently, if you live in the area of Coastal West Sussex CCG (13%), you are 6.5 times less likely to have had an annual health check than if you live in the area of Eastern Cheshire (85%).

Again, there are a few things to bear in mind when trying to make sense of your local area. First, in fully 19 CCGs (9.1% of the total number of CCGs), their information was so bad that a percentage could not be calculated. Second, in the year reported, the age range of people of learning disabilities eligible for an annual health check changed from 18+ years to 14+ years, so some areas may not have been very well prepared for this. Third, if a local area is better at actively finding and registering people with learning disabilities on GP registers their percentage is likely to go down (as the number ‘under the line’ gets bigger). The online information does report the total number of people with learning disabilities registered with GPs so it’s worth looking at that as well as the overall percentage.

One thing I haven’t mentioned is the first column in the webpage, a ‘panel assessment’ of CCGs when it comes to services for people with learning disabilities. The headline figures are that 192 CCGs (91.9%) were rated as ‘needs improvement’, 16 CCGs (7.7%) were rated as ‘performing well’, and one CCG (0.5%) was rated as ‘greatest need for improvement’. Because the panel only had two bits of information to go on, their rating system seems quite straightforward – if a CCG was reported as having less than 20 people with learning disabilities per million in inpatient services (3 CCGs) OR if a CCG was reported as hitting 70% of more of people with learning disabilities getting an annual health check (13 CCGs) they were rated as ‘performing well’. As long as you’re doing well on one of these indicators, you can be doing badly on the other one and still be ‘performing well’. With only two bits of information, I’m not sure how useful this panel rating is, to be honest.

Hopefully this blogpost is useful if you’re interested in looking up your local CCG. Whether these first steps towards transparency are really designed to improve the accountability of CCGs to their local populations, well that’s another question.

Hobnob's Choice: The right of people with learning disabilities to live healthy lives

We know that people with learning disabilities in England (and in other countries around the world) die, on average, some 15 to 20 years younger than people without learning disabilities. We know that people with learning disabilities are more likely to experience a wide range of health problems than other people, are more likely to experience multiple health problems, are more likely to be prescribed antipsychotics and multiple medications, and are more likely to go to emergency hospital departments with health problems that, if well managed, shouldn’t need emergency hospital care.

We also know that people with learning disabilities are more likely than other people to be overweight or obese, and that this difference emerges in childhood. We know that people with learning disabilities are less likely than other people to live healthy lifestyles in terms of things like diet and physical activity. The ‘hidden majority’ of adults with learning disabilities are more likely to drink alcohol and smoke compared to other people, probably starting in the teenage years.

We know that people with learning disabilities throughout their lives are more likely to experience a whole range of adversities that are linked to poor health: poverty, hardship, poor housing, unemployment, discrimination, crime, social isolation, restricted social and intimate relationships, and a wide range of adverse life events.

The poorer health and early death of so many people with learning disabilities is not inevitable. A learning disability is not in itself a health condition. Much of the difference in health between people with and without learning disabilities can be accounted for by the greater adversities experienced by people with learning disabilities. This (along with poorer treatment by health services) is what makes the poorer health experienced by people with learning disabilities a health inequity, an example of “differences in health that are unnecessary, avoidable, unfair and unjust” (Whitehead, 1992).

Services that support people with learning disabilities, particularly residential and housing social care services but other services too, are really important in the lives of those people with learning disabilities that can get access to them. How they support people is going to have a massive influence on people’s health. So, from the evidence in front of us, why don’t social care services do all they can to support people to live healthy lives, with reasonably healthy diets and a reasonably active and fun life?

There are many potential reasons for this, but in this blog I want to talk about one reason often given by professionals and support staff to justify unhealthy lifestyles on the part of the people they’re supporting, choice. The argument is straightforward – like anyone else, people with learning disabilities have the right to choose the food they eat, the drinks they drink, and what they do (or don’t do) with their time. The role of services is not to constraint people’s right to choose.

Given that the Mental Capacity Act legally enshrines the right of people with capacity to make unwise decisions, are attempts to address the unhealthy lifestyles of people with learning disabilities inevitably in conflict with this right? In this blog I’m going to try and argue no.

First, staff appeals to the right to choose unhealthy lifestyles sit quite oddly with what many services routinely do. Staff in residential and housing support services routinely constrain people’s right to choose in many other areas of their lives, either explicitly via risk assessments or implicitly via staff rotas that constrain where, when (or if?) people go out, whether people ever have sex, or whether they can attend a place of worship if they choose. Services don’t seem concerned that they impose restrictions on other unhealthy behaviours: people with learning disabilities in residential services are less likely to drink alcohol or smoke tobacco, for example. Why is the right to sit on the sofa and eat doughnuts sacrosanct in the face of such routine constriction in other areas of people’s lives?

Second, appeals to choice are typically made to justify someone’s choice to engage in unhealthy behaviour. I don’t know I’ve ever heard this appeal to choice used to justify a person’s choice to engage in healthy behaviour. What if someone was watching the London Marathon on TV and expressed the choice that they wanted to take up running? Would this expression of choice be heard, followed up and supported as a fundamental priority? Choice (particularly from a piffling range of unhealthy options) is not self-determination - being more in control of the options available.

Third, appeals to choice assume that a person’s choices at a particular time and place are somehow ‘natural’, and that trying to change anything with the possible consequence of improving a person’s lifestyle is imposing artificial constraints on these ‘natural’ choices. An obvious point is that no-one, ever, is making choices within a free-floating void of infinite possibilities. People’s life histories up to that point, who is around the person, where people live, how much money they have at their disposal, their health (and the medication they are taking), and the weight of routines (among many other things) all have an influence on the bandwidth of options that are seen as possible, which among these options are seen as desirable, and which (if any) of these options actually happen.

What is the bandwidth within which many people with learning disabilities are likely to be making choices about health behaviours such as diet and physical activity? Some questions (and this is no means an exhaustive list):

·        What are people’s life histories when it comes to health and healthy behaviours? What did people grow up with in terms of what they tended to eat, and what they saw and were encouraged (or discouraged) to do in terms of physical activity, for example?

·        What is available to eat and drink where people are living? (money is obviously a big factor here) Do people have the chance to try different things? What skills do people (and those supporting them) have in terms of preparing fresh food and drinks? What do people see those around them eating and drinking (and smoking?)?

·        What options do people think they are choosing from?

·        Are people confident in their ability to follow through on a choice they want to make?

·        What support are people getting to actually do physical activities that they might find fun? (no matter where people are starting from)

·        Are people on medications that make a difference to their physical health risks (for example antipsychotics and weight gain) or their capacity to make decisions (again, antipsychotics)?

·        What histories do people have of being bullied or discriminated against, and does a (often very real and present) fear of further discrimination have an impact on what people are prepared to do (and where they’re prepared to do it)?

·        How much money do people have at their disposal? How much money does the service have at its disposal?

·        Where are people living? Where are the nearest shops and what kind of food and drink do they sell? Are shops selling fresh food accessible? How do people get to the shops? Or is food delivered to the door via internet shopping? Who gets to decide which food and drink is bought?

·        Are local neighbourhoods seen as hostile? Are they pleasant, attractive places to be in?

·        What are different ways that people can imagine to be physically active in a way they might enjoy, and do people have the gear (clothing? footwear?), places and people to do these activities?

·        How do people get around beyond their house? By car? Public transport? Walking? Cycling?

·        What ‘activities’ are part of the routine, and are activities beyond the routine encouraged and supported? Does a trip in the car for a treat at McDonalds or the local Costa café (with a ‘treat’ of a cake every time) count as an activity?

I know in my life all these have been crucial in shaping my health and the choices I make (in some ways healthy, in other ways unhealthy). I have a lot of control over these choices, but my life history (for example my parents aren’t smokers or big drinkers, but they are overweight and like cakes a little too much), my circumstances (do I have the time to cook tea from scratch or not, or am I late home from work with the kids off to do stuff in the evening) and where I live (in the Lake District, where a beautiful, safe walk is easy to get to, but I’m the token slob in a group of friends that tends towards lycra-clad extremities of exercise) all have an enduring, daily impact on the choices I make.

For me, the appeal to choice to justify unhealthy lifestyles is incoherent and largely specious. The ‘choices’ people are making are often heavily constrained to a very narrow bandwidth, in environments that come down heavily on the side of unhealthy behaviours in ways that make more healthy behaviours not only difficult but not even imaginable. Taking people’s health seriously doesn’t involve restricting choice. If anything it involves the opposite: supporting people to grow in the exercise of their self-determination, in environments that support people to try new things and take control of their lives. People still have the right to make unwise decisions in relation to their health, of course, but in a broad bandwidth of possibilities these decisions allow for people to (sometimes) choose health, rather than in effect having poor health chosen for them.

Reference

Whitehead M. (1992). The concepts and principles of equity in health. International Journal of Health Services 22; 429–445.

How very dare you!

Having been away from twitter for a week or so, I thought I’d try and catch up a bit on what’s been happening with some of the people I follow. I’m now thoroughly bemused and depressed by what I’ve read. I’m certain that I haven’t caught up all with the relevant exchanges and blogs, but it seems that a segment on Victoria Derbyshire Live last Monday linked to the 5^th anniversary of the Panorama undercover programme about Winterbourne View has been followed by a lot of debate (some of it quite vituperative), largely directed at @GeorgeJulian (and by extension the #JusticeforLB campaign) on the basis of George asking some questions of the Mencap representative @dan_scorer during the TV segment.

There are a few things about how this debate has played out that confuse me, to say the least, and this blog tries to set out some of the basis for this confusion. Upfront, I do want to say that any charity worthy of the appellation should be welcoming the kind of questions George raised with open arms, rather than seeing them as a threat to their corporate brand. [As an aside, the unpreparedness of Mencap to respond to these questions suggests that questioning and challenge isn’t a part of the internal culture of the organisation either, which doesn’t augur well]. I’m not sure that being late to this debate helps or hinders, to be honest, but here goes.

The first thing that struck me was the sense that asking questions about Mencap was in itself not a legitimate thing to do. It wasn’t that the questions that George asked received adequate answers  (and they are questions that are being asked about a lot of big charities, particularly those who are also big service providers); for some people it seemed to be that questioning Mencap at all was somehow to impugn their virtue or to negate/insult anything positive that they do. Personally, I’m not convinced that charity status should automatically confer a shawl of unquestionable virtue, for a number of reasons.

First, surely the example of Kids Company should be enough to make anyone want to see transparency and accountability in the charity sector, and to worry about any charity that takes on the mantle of virtue to the extent that any challenge to its operations is seen as sour-faced and illegitimate.

Second, there are inevitable (and perhaps sharpening) tensions between any charity that functions as a service as well as a campaigning organisation (and in an English context Mencap is a large provider of a wide range of services for people with learning disabilities). To what extent can any such charity bite (rather than lightly nibble) the hand that feeds it, and how do Mencap’s campaigns negotiate these tensions?

What should be the expectations of a large charity providing services for people with learning disabilities, to justify its charity status (including the ensuing tax breaks)? My personal list would include something like the following (although this list is not exhaustive, and some non-charitable service providers manage at least some of these better than Mencap):

1. A commitment to human rights (with strong, publicly available evidence that their services are showing a commitment to this routinely, day by day).
2.  An open, transparent culture of continuous learning to make their services the absolute best possible – to rigorously evaluate how good their services are, to be honest about where things aren’t going well, and to be curious about how to make them better. A quick look at the CQC website shows that, while most inspected Mencap services are rated as good (87, I think), a substantial number (12) require improvement and 1 service was rated inadequate. No Mencap service was rated outstanding.
3. Evidence that people with learning disabilities and family members are central to deciding how the charity is run (including how the services are run), what the campaign priorities are, and what the goals of these campaigns are.
4.  Public evaluation and reflection on whether the campaigns have met meaningful goals, with ongoing debate about the effectiveness of their campaigning activities and what this means for achieving meaningful change.
5.  Supporting, taking part in and contributing resources to other campaigns and campaigning organisations led by people with learning disabilities and families.
6.  Generally, ‘being the change you want to see’ (not Mahatma Gandhi, apparently) – for example, if you’re going to campaign about the employment of people with learning disabilities you should be an exemplar employer of people with learning disabilities yourself.
7. Supporting people with learning disabilities and families to develop compelling new narratives and policy proposals for a comprehensive, positive alternative agenda for how people want to live their lives and to be supported in doing that.

From an outsider perspective, it is impossible to know how much Mencap are doing any of these things.

The central Mencap communications strategy appears to be really quite corporate and ‘on message’, with very little meaningful engagement with other people outside the Mencap circle. Social media statements are relentlessly cheery, with lots of openings of things, fundraising activities, repeats of Mencap campaign statements, and congratulations to Mencap services getting a ‘Good’ CQC rating. Occasionally there are calls for the government to do something (although, beyond actions that result in increased funding for the type of services that Mencap provides, these calls for action are relatively non-specific). What I haven’t seen from Mencap is anything when a Mencap service gets a CQC rating of ‘Requires Improvement’ or ‘Inadequate’, or any reflection on the potential difficulties and pitfalls in trying to run a large network of services, particularly in financially straitened circumstances, or indeed any reflection on whether trying to run a large network of services is itself an obstacle to supporting people well.

Instead, any inconvenient news about Mencap is simply ignored (Mencap are adroit users of silence as part of their communications strategy – the last week being a supreme example). If ignoral looks like it’s not working, then attempts are made to move public critique to a private realm (either via statements that are sent to people individually rather than made public, or via offered ‘private conversations’ to certain people – I was offered, and turned down, one of these, after I wrote a blog about the initial Bubb’s breakfast debacle). An alternative strategy is to deflect accountability by passing the buck to local Mencap branches (as with the involvement of a Mencap governor on the Southern Health Board of Governors, or the continued patronage of MP Stephen Crabb of his local Mencap branch).

To me, this seems like the behaviour of a controlled and controlling corporation, and it makes it hard for me to look at Mencap’s campaigning without applying a lens of corporate self-interest. If Mencap wasn’t a charity but was an independent sector service provider of similar size, would we see these campaigns as a branch of self-interested lobbying? The strapline Mencap uses for itself, “The voice of learning disability”, implies a market sensibility – are other voices of learning disability competitors to be squeezed out? (only one organisation can be ‘The Voice’, as Saturday night TV has taught us). This is quite apart from this strapline ignoring People First campaigning over many years (the recent glossy launch of ‘Learning Disability Voices’ – all service providers, including Mencap – shows the direction in which voices can apparently be stretched).

Who sets the terms of Mencap campaigns? What are these campaigns trying to achieve? How would we know if the aims of these campaigns have been achieved? The final question in particular may be impossible to definitively answer, and from my particular glass house of questionably pointfull activity I don’t wish to throw stones, but I do think it’s fair to expect public reflection, engagement and challenge on these issues. It’s hard to know about any of these quandaries from looking at the Mencap website – there is little public reflection or debate on any of these issues, and the public face of Mencap campaigns seem to follow the same corporate logic as the rest of their activities. There is also little evidence that Mencap support other campaigns which they have not initiated and do not control (such as #JusticeforLB or more recently #7daysofaction), either in terms of visibility or putting their muscle to work in support of these campaigns.

Third, a number of people have suggested that then (the 5^th anniversary of the Winterbourne View Panorama programme) was the wrong time for George to ask questions about Mencap. There seemed to be a couple of issues here. One was that this apparently diverted attention from the Winterbourne View families (although 4 families signed the letter organised by Mencap, none appeared on the Victoria Live programme and I don’t know why this was, although another family member of someone who had been in an inpatient unit did appear) and the issue of inpatient units in general. Another issue was that asking questions about Mencap diverted attention from a valuable media opportunity to hold the government to account. I have a few thoughts about this:

1. There has never been a ‘right time’ to enter into a debate with Mencap about any of these issues. Such questions about Mencap (as about a number of large charities) have been rumbling around for some time, and Mencap has never engaged with them, consistent with their corporate communications strategy above. When would have been a good time?
2. I don’t think the ‘hook’ of the 5^th anniversary of the Panorama programme was particularly significant to the government (although it should have been) – they generally seemed no more concerned than  on the 3^rd or 4^th anniversaries, and a range of issues concerning the scandalous mistreatment of people with learning disabilities seems to be making it into press, TV and radio less infrequently. Any political imperatives lie elsewhere (particularly with pledges Simon Stevens of NHS England made to the Commons Public Accounts Committee, for example, in my view), and a generalised call ‘to the government’ suggests campaigning is being performed without any specific aims in view.
3. The ‘resilience’ of inpatient services in the face of policy strictures, concordats and programmes to reduce their number is grimly impressive in its way, and the #JusticeforLB and emerging #7daysofaction campaigns (see this excellent new documentary from @DimitriadiSophi https://youtu.be/n3hqZ2jkvns ) are right to focus attention and action on this. Both campaigns are strongly of the view that inpatient services cannot be seen in isolation, however. They are the end-station of a system that does not support people and families in their aspirations, treats human rights as optional extras, and is less than indifferent to people’s early deaths. I think people generally (and need to) see more than one thing at once.

Fourth, I’m very confused by the opprobrium heaped on George for undermining the ‘unity’ of the ‘voice of learning disability’ by asking questions and expressing a different viewpoint (isn’t this exactly the ‘thought diversity’ beloved of management wonkers?). As a number of people have pointed out, such diversity is both inevitable and to be welcomed, rather than suppressed. For me, unity does not mean doing whatever Mencap says (again, the totalising ambition of being ‘the voice’). My limited reading about the processes by which ‘successful’ civil rights and other campaigns have operated included diverse groups agreeing and working together on a small number of central campaigning aims and strategies, while disagreeing about a lot of other things. If this is right (and I’m on very shaky ground here), then Mencap and other large charities would be only one of many ‘voices’ around any such table, and would be contributing their resources to rather than controlling any such campaign.

This brings me to my last point, which was raised by George in the Victoria Live discussion and has been mentioned by other people too, that people with learning disabilities were the objects of the discussion rather than active participants in it. Part of my reluctance in writing blogs like this one recently (as opposed to blogs describing information) is that they occupy space that should more properly be occupied by people with learning disabilities. I am lucky enough to have met a substantial number of people with learning disabilities who are more than ready to take on the leadership of a national campaign, developing the kind of alternative positive vision needed and making it happen in practice. What are the elements of that vision, and what should the strategies and tactics be? I don’t have a clue, and it’s not for me to say. It’s for people with learning disabilities to come together and kick some serious political butt, with others only collaborating/contributing if they are called upon.

Compared to many/most organisations involving people with learning disabilities in England, Mencap has worked very hard (through continuous fundraising) to get to a point where they have undoubted campaigning resources and muscle – for example in their connections with politicians and elements of the media. I would say that some of their campaigning has been really important in raising issues that had been (and continue to be) swept under the carpet, notably ‘Six Lives’ (death by indifference). Many (but by no means all) of their services provide good support to people with learning disabilities, and Mencap have provided invaluable support to some families (but not to others). Wouldn’t it be great if Mencap put some of that muscle at the service of emerging groups of people with learning disabilities working to take power, rather than seeking to control everything they are involved in? If they don’t, I can see politically savvy people with learning disabilities simply bypassing Mencap altogether and treating it as an establishment irrelevance. The voices of people with learning disabilities will not be denied.