Decisional capacity: Good Question demo videos now available

This is from our blog post after meeting with the two people from Grace Eyre who helped us make the videos:

Keith and Mikey had their first look at the videos today and it’s safe to say they were pretty pleased with them. I said we would be posting them up on the site by the end of the week and Mikey wanted to know where that would be. Keith said that they would be on the internet so ‘everyone’ could see them. He was even more pleased to think that his rather fine self would be preserved on film as his real self began to get a little older and maybe not quite so powerful-looking! …!

Consent to Participation (in research or other structured activity)

Consent to Treatment (or other individual procedure or activity)

We are developing commentaries in the form of notes to accompany the films and including some of the points in our FAQs sheet and we welcome questions and queries to help populate our information with pertinent material.

Winterbourne’s Silent Majority

In 1981, I went on placement as a clinical trainee to a large mental handicap hospital in Surrey. I had never encountered people with learning disabilities before, and I was shocked to the core. But I was a qualified general nurse, and I was used to clearing up the messes bodies make when they’re ill or distressed. I was also used to pulling curtains around people on bedpans, to chasing doctors out of the women’s wards while personal care was being delivered, and to helping people to eat when they had forgotten how. I saw how morale was raised by giving patients a wash and set before visiting. We had to dismantle the bed head to achieve that, and spread rubber sheeting over the floor to contain any splashes. Imagine then, finding wards stacked with beds almost touching each other. With toilets that were nothing more than a series of holes cut in a wooden seat – no partitions, no toilet paper within reach, and no flush mechanism. Imagine being told that the elderly chap I was going to ‘test’, could be found on one of the ‘boys’ wards, which was in a different wing from the one housing the equally mature ‘girls’. Imagine receiving a request to go to a ward to identify ‘the shit flicker’.  My supervisor there; defeat in her shoulders, her eyes, her mentality, said she didn’t know what we did that the local vicar couldn’t do. I don’t know what she meant, but I could see that she meant it.

I was there for two months, and beyond the desolation and social impoverishment, saw no physical abuse. A year or so later, I found myself on placement at another institution, this one in Kent. Darenth Park was a 2000 bed repository for adults and children with learning disabilities, and it was due for closure. It smelled of cabbage and urine, and the windows were grimy, sticky, broken portals through which the defeated campus could just about be seen, if you felt inclined to stand there long enough. The patients often stood there. They stood around in all sorts of places; rocking, flapping, biting their hands, eating dirt or bits of detritus and old dog ends.

That’s not to say there were no activities. Some of these were grand and much missed once the place finally shut down. Concerts, films, fairs; run by staff with the assistance of the ‘high grades’ – people thought capable enough of doing menial work, but not of receiving payment. A man I spoke to a couple of years later, moved out to a brand new hostel in the community, was depressed and miserable because he had no role in this new environment, the new improved and normalised world we had given him. He had experienced a dramatic loss of status by shifting from being a valued member of the hospital fire department and ‘body gang’, to potato-peeling kitchen skivvy. That we valued potato peeling (for him) as a step towards independence meant nothing as kitchen work had been done by ‘low grades’ and women (sic) at the institution.

By 1984, I was working in this new world and beginning to offer talking therapy to our service users. Bromley was one of the first boroughs to close its institutions and begin providing community ‘core and cluster’ residential services for people, many of whom who had never lived anywhere but an anonymous hospital. One of our first groups arrived along with two large bags: one contained their toothbrushes, the other their teeth. Neither offered any identification by which contents could be matched with their owners – assuming there had ever been a link. Certainly their clothes were more communal than individual, and had the look of expedience about them. Shapeless frocks for the women, trousers with elasticated waists for the men. As a team; nurses, psychologists, psychiatrists, trainers and educators, we set about de-institutionalising our residents, and watched the years dissolve away as they got the hang of shopping for clothes, having their hair done at salons, and cooking a meal for six after doing the shopping themselves with minimal support. There were so many highlights, watching people moving on to live independently, to get jobs locally, to join local church and club communities. But two stand out for me, both involving young men with Down’s Syndrome, and each tiny but triumphal in its own way. The first was a birthday party at the hostel where there was real party food (adult), real music (up to date), and real refreshments (proper wine). ‘Steve’, a largish but shortish chap whose appearance had been less couture than convenience, moseyed into the room wearing a Miami Vice outfit of ice green shirt, white trousers, and dark glasses. Cool before ‘cool’ was ‘cool’. The second was when ‘Alfie’ went shopping in Bromley on his own. ‘Alfie’ used an electric wheelchair (which no one could fix except the chap who had dismissed kitchen work as being beneath him) and was a tad gung-ho about its controls. We had a call from the police to come and get him as he had been yahooing at speed on the wrong side of the road in the high street and causing traffic chaos. Whatever else we did in those early years, with our science and our theories, it is the freedoms of fun and confidence, rule breaking and identity-stamping that, for me, exemplify the move from the dehumanising degradations of the past to the liberations of the present.

That’s why I was so shocked to see the BBC Panorama programme about Winterbourne View. In thirty years of working in learning disability services, I have not seen abuse of this kind. I have heard of plenty; often told me in therapy sessions by people only able to say what happened when the perpetrators were far out of reach. Institutional abuse has come to light via the media as well. Long before Panorama, ‘The Silent Minority’ was filmed undercover at St Lawrence’s hospital in Surrey, and tipped the impetus for change hard over into national action. The difference, barely forgivable as it is, between these two exposures, is that the St Lawrence’s abuse took place in an era of discriminatory partition where people with learning disabilities were feared, thought of as untreatable, and tidied away by society to large, closed communities. Parents were advised to ‘put him away and have another baby’, and the people who worked in the ‘away’ places, were under-resourced, under-skilled, undervalued, and equally institutionalised groups lacking direction or proper training. Society did not much care what happened to the patients, and families often abandoned them. Two women, cousins of the Queen, were patients of one of the hospitals I passed through in my training. The fact that no one knew quite who they were, or where, suggests that family visits were not exactly frequent:

For several decades two of the Queen Mother’s nieces, Katherine Bowes-Lyon and Nerissa Bowes-Lyon, were kept there without visits from the Royal Family and were declared dead by Buckingham Palace in an intentional fabrication. Wikipedia

Winterbourne is a different matter. These staff are not living onsite, isolated from the rest of society and so insulated from the norms of decent human behaviour. These staff have the benefit of news media, training, friends, family. They are people with lives embedded in the real-world who have direct access to ways of developing a moral yardstick, and yet they did not. What I saw was sadistic bullying perpetrated by a few and acquiesced to by the rest. I have seen neglect and poor practice born out of ignorance, fear and inexperience, and I have seen it turned around by people with skill, care, and respect for both the service users and the bewildered staff teams.  This was not in the same league, and as such, it is astounding that the CQC did not pick up the signs when inspections were made.

Or is it? I would like to think that I have a ‘nose’ for the ethos of a service. That my experience allows me to see through the scripted presentations of good care to the plot holes that might indicate inadequacy. It’s worked in the past, but then I’ve been around a good many blocks in the development of that instinct, and I have more time to probe. If the CQC missed this, I have to speculate that this was due to inadequate experience and inadequate time. They did not know how to look for the plot holes, and did not have the time to reflect on the gaps. The tragedy is that the CQC is being given even more responsibilities, has even less funding than before, and if the government’s plans to allow free access to NHS services by private enterprise, its remit is going to be catastrophically unmanageable.

The answer? I wish I had one, but I suspect that part of the solution is public conscience. I hope that this undercover expose will drive local communities to make more contact with residential services of all kinds, and not just on open days. If local people become socially involved with such places, become visitors who bring the outside world with them to assist a bit, entertain a bit, ‘be with’ a bit, fewer bullying, torturing criminals will be able to get away with their abuses. We would soon know about the provisions where no one is allowed beyond the visitors’ room, where appointments have to be made to drop in on a friend who lives there, where glossy brochures are nothing but hollow scripts masking neglect, misery, and the annihilation of humanity. Most people have good ‘noses’; they know a bad smell when they find one, but they’re often intimidated by the authority of the system, the people paid to regulate and make safe. But as we pay them, the people who staff those systems and exercise that authority on our behalf, do we not also have some rights to question? Are we not also responsible?

Samantha Backler – died of starvation

Samantha Backler: picture from St Albans Review

from St Albans Review

Samantha was a 29 year old woman with cerebral palsy who was in the sole care of her mother. It is thought that she died as a result of being unable to care for herself or to call for help when her mother died suddenly. This was in 2010. There had been concerns since 1998 after Mrs Wolf, Samantha’s mother, was admitted to hospital with mental health problems, after which support from GPs and social services was increasingly denied. Mrs Wolf, apparently, was afraid that Samantha would be taken away from her. (St Albans Review inquest report)

I can understand this. I work in an integrated health and social services team and I see this kind of situation from both sides. Parents desperate to hold onto care even when they know they are not able to deliver; services ham strung by legislation that, as adult protection, is less robust than its child protection predecessor. One parent once told me that she could not bear to think of her intellectually disabled (adult) child having to survive without her because ‘no one loves her like I do’. Not the first time I worried about a sequence of murder and suicide. Colleagues, on the other hand, have turned themselves upside down and inside out to help families who were not coping, but in the end, were rendered impotent by legislation that seemed to put family wishes ahead of the person with the disability. This has often been complicated by the difficulty in getting a clear view of the service user’s needs as an independent opinion, so often are they trapped within a co-dependent relationship with their care givers.

In 2005, the new Mental Capacity Act came into effect. This meant that everyone should be ‘presumed to have capacity’ unless there is good reason to believe otherwise. It also says that capacity is decision specific’ and not linked to cognitive ability, diagnosis, or condition. In other words, it is no longer possible to assume that someone lacks capacity to decide for themselves because they have a learning disability, you have to ask them or you have to demonstrate that they lack capacity IN THIS INSTANCE  and in this instance ONLY.

What I am wondering with this case is, who asked Samantha what she wanted in terms of her care? Was she seen independently? Did she have an advocate? Was anyone speaking for her so that there was a clear mandate for medical and social services to leave her in her mother’s sole care? And critically, did anyone know how to interview her in such a way as to avoid leading her responses or relying on acquiescence?

Wherever possible, vulnerable adults should be accorded advocacy and expert assessment using a modified cognitive interview (see Clinical Psychology Forum 2006) to ascertain their views without risk of  interviewer contamination of those views. I have seen no evidence that this kind of approach was offered to Samantha Backler, and while there is no guarantee that this would have saved her life, there would at least have been documented evidence of a clear mandate from her to be left alone, in full appreciation of the risks. Either that or she would have been the subject of a ‘best interests’ multi disciplinary meeting which would then have taken the appropriate decision  on her behalf  in accordance with the evidence.

Sometimes it seems we are a little too ready to accede to family wishes and to fail to hear our service user’s voice. Samantha may have been a tragic victim of everyone’s genuine wish to do no harm. We have to learn how to discriminate between what is wanted and what is right, and to stand up strongly for the latter even when the former is screaming correctness and blinding us with loving best intentions.