Laughing Boy versus the Zombie Institution: Closing the new institutions for people with learning disabilities Day 49 #1

1. Laughing Boy versus the Zombie Institution: Closing the new institutions for people with learning disabilities Day 49 #107days #justiceforLB

2. LB – Laughing Boy • From LB’s mum’s blog http://mydaftlife.wordpress.com/ • This blog started as a record of random happenings that I’ve experienced over time. It is was also about capturing everyday life, through image and snippets of conversation and observations, at home, on the bus and just wandering through life. Key players in these events, apart from LB (see below) will probably include Richy Rich and kids; Rosie, Will, Owen and Tom. As for me, I am a sociologist by background and work at a local university focusing on disability, health experiences, difference and inclusion.

3. LB – Laughing Boy • The focus of the blog has shifted to ‘transition’ as LB comes to the end of his school life and stands, unaware, on the edge of a huge gap in adult services.  • It’s now about the experience of negotiating mental health/learning disability services, as the lack of both meant that LB was admitted to inpatient care a few months ago now. • Some people suggest that LB  (17) has various labels like autism, learning disabilities, epilepsy and Klinefelter syndrome. I just think he is one crazy dude who loves Eddie Stobart, drum and base and going to London.

4. LB tales • LB’s presents this year. A success. We managed to get him a die cast cattle truck that he’s wanted for the best part of this year. Very, very cool. And Eddie Stobart; The Ultimate Guide to British Trucking Legends (by Martin Roach). A full colour, hard back guide to the legend that is Eddie S. Rock and roll presents that are kind of age appropriate (or at least no Playmobile for the second year in a row). • After wrapping them up, I couldn’t resist going to check with him what he wanted for Christmas. Just to enjoy hearing him say ‘Cattle truck Mum’ again. For the last time. • “A onesie Mum”, he said. Without missing a beat.

5. LB tales • LB had a friend at school for a few years. Joe H. Joe H was outrageous in the best and worst senses of the word. He was a very funny guy. LB found him hilarious and talked a lot about shooting up in the playground and smoking weed with Joe H.  He left school last year and wanted to give LB his phone number but rules forbade this. Instead I had to write in the school diary to ask Joe’s mum to give me the number. • Eventually LB came back with a post it note with Joe’s number. Hurrah! We dialled the number and handed the phone to LB. He sat in the living room, chuckling every few minutes.  Ten minutes later, he was still sat there with the phone. “He he he”….. “He he he”…. • Twenty minutes later. “Maybe you should hang up now?” I said, not sure if Joe was still on the phone (or had ever been). • “Ok.. Bye Joe”, said LB. • “That was nice, talking to your mate on the phone. What did you talk about?” “Afghanistan, Mum”, said LB, replacing the phone.

6. LB – Laughing Boy • LB died in a local NHS run short term treatment and assessment unit on July 4th. He was found dead in the bath. There were five patients and a minimum of four members of staff on duty 24 hours a day. Investigations are underway into how this could have happened.

7. LB to #justiceforLB • LB’s family have faced (and continue to face) a constant fight to get the truth about what happened to their son(including having to fund their own legal costs) • Southern Health NHS Trust originally tried to claim LB’s death was due to ‘natural causes’ • Trust (reluctantly) commissioned an independent investigation, which found LB’s death was ‘preventable’ • In a highly staffed ‘specialist’ unit, evidence of seizures (repeatedly highlighted by his family) was ignored by staff • While in the bath, LB was on a 15-minute observation schedule (10 minute observation schedule at other times) • He almost certainly had an unobserved seizure and drowned in the bath • Damning lack of competence, respect, professional leadership and responsibility

8. LB to #justiceforLB • A CQC inspection report of the service 3 months after LB’s death was similarly damning: “Up to four staff [in a unit with 5 residents at the time of the inspection] mainly worked on administrative tasks within their office, with one member of staff out on the unit.” “Over the course of two days, we saw few social or therapeutic nursing interactions with people who stayed there… There appeared to be an impoverished environment with little therapeutic intervention or meaningful activities” • Other LD and MH services operated by the same NHS Trust have received enforcement notices after CQC inspections • Monitor are investigating the Trust

9. LB to #justiceforLB • After the publication of the independent report, growing support for LB and his family and a sense of outrage • Starting off by using social media, the #justiceforLB campaign was born • All volunteers contributing in any way they want to • #107days campaign to reflect (one year on) LB’s 107 days in the Assessment and Treatment Unit (ATU) • To fundraise for LB’s family’s legal costs and to gain #justiceforLB

10. What does #justiceforLB look like? • For LB • To achieve all of the below • Staff, as appropriate, to be referred to their relevant regulatory bodies • A corporate manslaughter prosecution brought against the trust • Meaningful involvement at the inquest, and any future investigations into LB’s death, so we can see the Trust and staff account for their actions in public

11. What does #justiceforLB look like? • For Southern Health and the local authority • Explanation from the CCG/LA about how they could commission such poor services • Reassurance about how they will ensure this cannot happen again • An independent investigation into the other ‘natural cause’ deaths in Southern Health learning disability and mental health provision over the past 10 years

12. What does #justiceforLB look like? • For all the young dudes • A change in the law so that every unexpected death in a ‘secure’ (loose definition) or locked unit automatically is investigated independently • Prevention of the misuse/appropriation of the mental capacity act as a tool to distance families and isolate young dudes • An effective demonstration by the NHS to making provision for learning disabled people a complete and integral part of the health and care services provided rather than add on, ad hoc and (easily ignored) specialist provision

13. What does #justiceforLB look like? • For all the young dudes • Inspection/regulation: It shouldn’t take catastrophic events to bring appalling professional behaviour to light. There is something about the “hiddenness” of terrible practices that happen in full view of health and social care professionals. Both Winterbourne and STATT had external professionals in and out. LB died and a team were instantly sent in to investigate and yet nothing amiss was noticed. Improved CQC inspections could help to change this, but a critical lens is needed to examine what ‘(un)acceptable’ practice looks like for dudes like LB

14. What does #justiceforLB look like? • For all the young dudes • Proper informed debate about the status of learning disabled adults as full citizens in the UK, involving and led by learning disabled people and their families, and what this means in terms of service provision in the widest sense and the visibility of this group as part of ‘mainstream’ society

15. Institutions look like this, right?

16. No, now they look like this

17. Zombie institutions for people with learning disabilities • Continue to be over 3,000 people with learning disabilities detained in ‘specialist’ inpatient units, often called ‘assessment and treatment units’ or similar • Can be NHS, can be private sector • Winterbourne View was one of these units • After Panorama programme exposing horrendous abuse in 2011, government promised a national programme to drastically reduce the number of people in these units by June 2014

18. Zombie institutions for people with learning disabilities • Can we really call these places institutions? • Erving Goffman in his 1961 book Asylums defined a total institution as “A place of residence and work where a large number of like-situated individuals, cut off from wider society for an appreciable period of time, together lead an enclosed, formally administered round of life.”

19. Zombie institutions for people with learning disabilities • Features of institutional routines include: • a complete breakdown of usual distinctions between work, play and sleep, so that all these things happen under one roof under a single authority; • block treatment of residents; • routines which act to depersonalise residents; • rigid routines; • maintaining a social distance between residents and staff. • Even where restrictions on a person’s liberty may be necessary (e.g. in high secure services) this does not mean that the person has to live in a total institution.

20. Are these places institutions? • Winterbourne View programme is starting to regularly collect information from service commissioners and service providers • Evidence recently made publically available from: • Learning Disability Census • Quarterly returns to NHS England • These give us clues to answer two questions: • Can we call these places institutions (rather than short-term, ‘crisis’, inpatient assessment and treatment units)? • What progress is being made to move people out, and to stop people going in?

21. Learning Disability Census 2013 • Census of people in CQC-registered learning disability inpatient services for ‘mental and/or behavioural healthcare’ • All people in these services at midnight on 30th September 2013 • Information submitted by provider organisations to HSCIC • http://www.hscic.gov.uk/searchcatalogue?productid=13823&q=LD+Census&sort=Relevance&size=10&page=1#top • http://www.hscic.gov.uk/searchcatalogue?productid=14640&q=LD+Census&sort=Relevance&size=10&page=1#top

22. Quarterly returns to NHS England • As part of the Winterbourne View Joint Improvement Programme, NHS England have started collating quarterly information from health service commissioners on what’s happening to people with learning disabilities in these services • First data available for Oct-Dec 2013 • All 10 NHSE specialised commissioning teams provided data • 169 out of 211 CCGs provided data (and for 11 of the 169, there were no identified patients), so the number of people identified here will be an underestimate • Identified 2,577 people with learning disabilities in these services • http://www.england.nhs.uk/ourwork/qual-clin-lead/wint-view-impr-prog/

23. Why are people admitted to these services?

24. What kind of services are they?

25. How long are people in these services?

26. How far from home are people ‘placed’?

27. What happens to people living in these services?

28. What happens to people living in these services?

29. Looks like an institution to me… • Not a short-term ‘last response’ option as part of planned local service strategy • Lack of clarity about why people go in and how they can get out • Very few ‘high secure’ services • People can be placed a long way from home • Most people stay in these places for well over a year (average length of stay for people with mental health problems in NHS specialist inpatient services – 64 days in 2011/12) • Huge geographical variation around the country, suggesting some areas do without these types of service

30. Looks like an institution to me… • Experiences and service responses suggest unsafe environments with little ‘therapeutic’ activity • Over two-thirds (68.1%) of people were given antipsychotic medication in the past 28 days • Large numbers of people are experiencing self-harm, physical assaults, accidents, hands-on restraint and/or seclusion

31. Conditions in place for radical change? • A horrendous scandal in an inpatient service, with national media coverage and accompanying outrage? Tick • Criminal prosecutions for the staff involved? Tick • A government minister committed to change who remains in post long enough to see things through? Tick • A high-profile national programme with (some) money put behind it? Tick • Clear targets for services to achieve, with clear deadlines? Tick • Ongoing monitoring and scrutiny of the national programme? Tick

32. How many people are in these services?

33. Are people moving out of these services?

34. Are people moving out of these services?

35. Why aren’t people moving out of these services?

36. How much do these services cost?

37. ‘An abject failure’ • Not my words, those of the Care Minister Norman Lamb in an interview last week • Very small numbers of people moving out, or even with transfer dates to move out • More people going in than coming out! • Lack of funding/services to go to, and ‘clinical decisions’ major blocks to moving out • All at a cost of well over half a billion pounds per year to detain/contain 3,250 people

38. Not forgetting people in LA-funded residential services..

39. At a cost of…

40. Don’t we know that bad things happen in institutions? • Inquiry report into Ely Hospital (1969) • Disturbing parallels with the independent investigation into LB’s death • http://www.sochealth.co.uk/resources/national-health-service/democracy-involvement-and-accountability-in-health/complaints-regulation-and-enquries/report-of-the-committee-of-inquiry-into-allegations-of-ill-treatment-of-patients-and-other-irregularities-at-the-ely-hospital-cardiff-1969/chapter-13-of-report-on-ely-hospital/

41. “Flecker” • 80.We received a letter from Flecker’s mother in which she wrote “my son has a boxed up ear”. When we went at the beginning of December, 1967, to Ward 23 in order to examine him, we found that he had just run away and was not available. He was quickly brought back to Ely but we did not have a further opportunity of seeing him until we returned in February, 1968. We then learned that he had died suddenly on 15th December, 1967. • 81.He was a man 29 years of age, who suffered from severe subnormality and epilepsy. He first became ill in the middle of the night. The Senior Hospital Medical Officer (to whom we refer hereafter as “the SHMO “) who examined him at 2 a.m. found him to be seriously ill, and, on the basis of his rapid respiration and physical signs in the chest, to be suffering from broncho-pneumonia. He gave him an injection of penicillin immediately and then oxygen by inhalation. An injection of coramine was given later on in the night. The patient died at 10 a.m. Death was certified as due to broncho-pneumonia. There was no post-mortem, and further investigation into the cause of death was not made.

42. 82.We were surprised that more had not been done in an effort to discover the cause of death in a relatively young man dying within 12 hours of first becoming ill, and we asked both the Physician Superintendent and the SHMO about the case. We were told that severely sub-normal patients may die suddenly, most commonly from epilepsy, and that resistance to broncho-pneumonia is sometimes very poor, death occurring within a few hours of the onset of ill­ness. The Physician Superintendent gave three as an estimate of the number of sudden or rapid deaths each year in the hospital. At the time of Flecker’s death there were no facilities for post-mortem examinations at Ely, what was formerly the post-mortem room having been turned into a mortuary, which has recently been reconstructed.

43. 83.We recognise that it is a matter of clinical judgment whether a case of this kind should be followed up (e.g. by arranging post-mortem or bacteriological studies) and a decision must depend in some degree upon the facilities available. However, we think it important that cases like Flecker should be sufficiently investigated. To do so provides a safeguard of one kind against a decline in nursing care or medical treatment. There are resources within the group, we suppose, which would make possible more than was done in this case. Flecker was a young man, who had been physically fit and active up to a few hours before his death. His death appears to have been accepted with less concern and less enquiry than the circumstances seem to us to have warranted.

44. Do we not have the evidence for an alternative? (1993/2007)

45. Who is responsible? Who is accountable?

46. The sparkly spirograph of shame 1: Providers • Whether NHS or independent sector, business logic applies: • Big money and profits/surplus to be made • Market ‘niche’ to be expanded • Corporate takeovers (NHS and private sector) • Becoming bigger and more remote from local communities (and commissioners) • Protecting corporate reputation more important than truth? • Bolstered by professions • Organisations in constant state of flux

47. The sparkly spirograph of shame 2: Commissioners • Commissioners also in constant state of flux • Commissioners reactive to crises (‘Friday afternoon commissioning’), not proactive in developing local strategies so these services won’t be needed • Locality-based small health commissioners, with no expertise, ill-equipped to handle large, geographically dispersed provider organisations • These services (literally) at the bottom of the agenda • Providers becoming ‘too big to fail’, with no alternatives • Reluctant to use the levers they do have, and decommission poor services • Outsourcing the ‘risk’ to providers?

48. The sparkly spirograph of shame 3: Regulators • CQC becoming more proactive and hard-hitting in their inspections, but only inspect site by site and limited in their remit and resources • Monitor largely financial regulator, reluctant to get involved on issues of quality • With NHS England as well, culture of improving services seems somewhat naïve • Seem to be somewhat cosy relationships between senior people in all these organisations, with a complete disconnection to the people they are ostensibly ‘serving’

49. The sparkly spirograph of shame 4: Academics • Many academics are just as disconnected from the realities of people’s lives • Just as craven in the face of (illusory?) access to influence and funding • At least as prone to innovotwaddle as anyone, jumping on to the next new shiny thing without seeing what’s really happening • Did we think the job was done while we looked the other way?

50. The sparkly spirograph of shame 5: The bigger picture • Segregated education on the increase: • What do young people with learning disabilities and their families take from this? • What do all the other young people and their families take from this? • Crisis in funding for adult social care, but also a chronic crisis in expectation and support: • Social services can treat people with learning disabilities and their families brutally • Not looking for how to support young people with learning disabilities to build a meaningful and fulfilling life for themselves; instead a constant process of fending off • What does this say about how society generally views people with learning disabilities and their families?