What would Justice for LB look like?
This past week, since the publication of the report into the preventable death of Connor Sparrowhawk in a learning disability mental health unit in Oxford last July, my timeline has been buzzing with reactions to it — different blog articles (including mine) as well as criticism of the response from Southern Health and its leadership, the state of care for this group of people, not just in the Southern Health area, and of the more general attitudes of people, particularly the medical profession, towards people with learning disabilities and autism in particular. People have asked the question of “what would justice for LB look like”, and in this entry I intend to make a few suggestions.
1. Overhaul or abolish Southern Health
One might recall that in the aftermath of the two well-publicised deaths of children in the London Borough of Haringey, convenient scapegoats were found: in the case of Victoria Climbié it was a junior social worker, Lisa Arthurworrey, and in the case of Peter Connolly (Baby P) it was the director of children’s services, Sharon Shoesmith. Both ultimately won their case for unfair dismissal. It would be a mistake to just make an example of one leader, such as Katrina Percy, and leave everyone else in place. Southern Health’s record of treating patients with both learning disabilities and mental health problems is not good at all, and a number of its facilities have received damning CQC inspection reports, most recently the Parklands Hospital in Basingstoke and Antelope House in Southampton. There is evidence that services have in fact declined since some of the facilities formerly run by the Ridgeway Partnership were taken over by them; a CQC report from Slade House in December 2011, for example, found that they were meeting all the standards they were tested on and that patients had a positive view of the care they were receiving. Their report from the same place after Connor Sparrowhawk’s death revealed the opposite (assuming that they had not been remiss when inspecting the first time).
Not only have a number of their units been found lacking in standards of care, but their response to fatalities they are involved in seems to follow a familiar pattern, as Rich Watts notes: “sincere apologies”, admitting liability, platitudes about “lessons learned” and assurances that staff will have further training, that they will work with relatives and carers to ensure that their concerns are met, etc., but then nothing happening until the next fatality (and families report, in this and other cases, that a conclusion of “natural causes” is immediately recorded and maintained by the Trust). It’s very clear that this organisation’s stock reaction is damage limitation for themselves, not making amends or genuinely changing their working practices, and that the rot is at different levels — the leadership of some individual units is rotten as well as that of the Trust itself. The whole thing needs root-and-branch reform.
2. Accountability for the individuals responsible for Connor’s death
It’s very clear that the leadership of STATT failed to do the most basic checks, as the report demonstrates. The idea that they didn’t know that it was unsafe to leave someone with epilepsy in the bath unsupervised is preposterous, since a quarter of people with learning disabilities have epilepsy — they must have come across them in the past. They must be referred to their respective professional Councils. Prosecution should also be considered, if not for individuals than on a corporate manslaughter charge for the Trust itself. If manual workers are held responsible for deaths and injuries stemming from negligence in their work (such as an unsecured load being spilled onto a highway), then surely psychiatrists, managers and senior nurses must be as well when they make elementary mistakes that lead to a vulnerable person’s death.
3. Deal with the ATU problem properly
This is less a matter of justice for LB’s death and more a legacy to ensure that not only do young people with learning disabilities stop dying preventable deaths, but that the circumstances that lead up to them stop reoccurring. It has been observed again and again that so-called assessment and treatment units do not do much of either, and that many of the people in them are simply being warehoused because there is nowhere else for them to go. They are also often ill-equipped to deal with autistic people and make little attempt to improve their standards in this area. They are phenomenally expensive, costing much more than some very comprehensive home and respite care packages. They are led by psychiatrists, but very often the patients have no psychiatric reason for being there; they are there because a crisis in their life situation has prompted challenging behaviour as a result of a pre-existing learning disability. The report into LB’s death notes that an unnamed senior staff member at STATT said she believed that LB should not have been there, as early examinations proved that he had no psychiatric illness and was “ready for discharge” by the time he died. He was not discharged for lack of a care plan.
As I have written here before, I have heard of other cases of ATUs being used entirely inappropriately, psychiatric medications being used inappropriately, and sections of the Mental Health Act being used inappropriately, mostly to manage challenging behaviour, not psychiatric illness. These medications can have serious physical side effects; Mark Neary has recently told how his son Steven developed a painful liver condition as a result of years of being on psychiatric medication, which was only diagnosed when he took him to a private clinic. Another person I know of is kept under section because of behaviour that could have been managed in other ways (such as trying to run away) and was prescribed diazepam as a result of the stress of an impending, unwanted transfer to a secure hospital miles from home, which her family are fighting (this particular threat has receded, but her multi-disciplinary team still want to keep her under section and transfer her somewhere else if not there). That unit has made no attempt to accommodate her needs, providing only basic activities and no outings because of an escape incident several months ago (a problem her family deal with, on their very frequent outings, with a suitable harness that she cannot open). They could have better calmed her by lifting the threat.
So the failure of ATUs must be addressed firmly. I suggest the following:
- All ATU staff must be trained in understanding and managing autism, and be able to make the environment stimulating for all those who have to live there
- Consider having separate units for autistic people
- Better tools for managing challenging behaviour, escapes etc than the Mental Health Act (if they do not exist already, in which case staff should know about them and which to use). Specifically excluding autism from the MHA should be considered.
- Staff should stop cutting families out of the care of their patients or service users, particularly when the SU is a young adult who has recently lived at home, and start listening to them about their concerns and about what the SU is used to, etc. Many families report that they are treated as the enemy, and often refused access to their relative’s living quarters. This must stop, except where abuse is a concern.
- Stop cutting day activities and support, as lack of activity and being cut off from friends, etc., are factors which can precipitate crises and make living at home (when relatives have to work, for example) difficult or impossible
- The NHS and charities should investigate ways to better manage the transition from school life to adult life, as again this is a major cause of crises in older teenagers with severe forms of autism
- Charities have to educate themselves about the realities of some of these units. A campaigns officer for Mencap said in a radio interview on BBC Radio Oxford today at ATUs are “large, clinical settings” and that the job could better be done in more homely settings, closer to home. In fact, they are often small units; STATT had only seven beds, and only five of them were being used.
- These same organisations should be championing service users and their families. Families often report that they are silent when they are fighting for their relatives’ rights or to get them home, but jump on the bandwagon when they succeed. That they are often commissioned to provide services for local authorities, etc., strikes some of us as not entirely coincidental.
- Cut the red tape, as it is widely observed in a variety of institutions, including schools, care homes and hospitals that many staff seem to spend more time on paperwork than with the people they are teaching or serving. It is a major cause of people leaving some professions in large numbers and of stress-related absence and early medical retirement, and was noted in the CQC report into Slade House and the report into LB’s death that staff spent too much time on administration.
- Deaths in these units should always be investigated by an independent body.
That we spend much money on ATUs is symptomatic of a much wider malaise: that we have to account for every penny and are always looking for an opportunity to cut spending because lower taxes win votes, and as a result, we can justify ATUs because they are “crisis care”, but not for home support or decent care homes — that looks like a luxury, or “freebies”, and for that, we always look for ways to make the user or their family pay if they have even modest means. So we must change this attitude to money and to disabled people, but there is so much that can be done in the meanwhile, both to improve crisis care and to keep people out of it. Much as heads deserve to roll at Southern Health and at STATT and other bad units, it won’t make things better for other people with learning disabilities outside the Southern Health area.
BBC Radio Oxford today (4th March) interviewed a mother of a former patient at Slade House from 2008-10, who told of dreadful conditions there before they were improved following her complaint, although it is clear that they declined again afterwards. Phil Gayle also interviewed Jason Carlisle, regional campaigns director for Mencap, and a representative from the organisation My Life, My Choice, who himself has a learning disability and was a former resident of the same unit as Connor Sparrowhawk. It can be listened to online here for the next week.
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- On imposing medical treatment without consent