Capacity, Consent and the Rightfullives Exhibition.

(There is a link to an easy read version of this blog at the bottom of the page)

Have you ever wondered why there is so little research involving adults with “severe” learning disabilities? In fact, have you ever wondered why there is so little of anything involving people with “severe” learning disabilities. It’s not because they don’t have anything to say or the need to have their lives understood or shared, it’s because it’s not straightforward. The capacity and capabilities of a person with “severe” learning disabilities often exist beyond the shared codes and understanding of our everyday language. For most of us language is the means through which make sense of our world and the way in which we consent and approve of the things we have done and the things that are done on our behalf. Having language as an easily accessible medium through which to represent our capacity and consent, is a cornerstone of our ability to lead a rights-based life.  But for a great many people with learning disabilities this over reliance on everyday language as a means of illustrating their capacity is discriminatory and plays a significant role in excluding the “voice” and presence of people with severe learning disabilities and/or autism from everyday life.

A few years ago, we had to make a decision about whether Mikey should continue going to college for four days a week. Without going into too much detail about the situation, a number of people in his life felt that it was in his best interests to go for four days a week, whilst he seemed to be finding college increasingly stressful and seemed to want to stop. I think he was about 19 at the time and the problem with the situation was that most people in his life felt that he lacked the capacity to make the decision for himself and that as a result of that apparent lack of capacity the decision could be made for him and that it was therefore reasonable to expect him to live with the consequences of that decision.

The challenge for all of us, but in-particular his social worker, was to make a judgement about whether or not Mikey had the capacity to understand the choices that were available and to make the decision for himself. The social worker’s judgement was complicated by the fact that Mikey would say different things to different people depending on what it was he thought they wanted him to say, something that I was reminded of in a recent blog by Mark Neary. And it is worth noting that Mikey also has different expectations about his freedom to express his own choices depending on his environment and the people he is with at the time.

So, we had to look beyond the inconsistent use of language and to make a judgement about whether or not he understood the practical implications of what college was, and whether or not he had a good enough understanding of time in-order to make a decision about what was meant by going to college for 4 days. In keeping with the principles of the Mental Capacity Act we used an alternative form of communication to support Mikey in being able to express his choice. Because whilst his use of the spoken word can be inconsistent, his use of text and image is far less so. So, drawing on the understanding we have of the way in which he communicates, as-well as Mikey’s skills in using information technology we agreed to develop a simple PowerPoint animation that would allow Mikey to express a preference for the choices that lay before him in a way.

In the end Mikey was able to express his preference to all of us and didn’t go to college for four days a week. But if his social worker had adopted an approach similar to that which had been employed in Steven Neary’s recent DoLS assessment then it is likely that a formal best interests assessment would have taken place and it is equally likely that it would have been judged to have been in his best interests to go to college for four days a week.

This is just a small example of why thinking creatively matters when making decisions about a person’s capacity to make their own decisions. It is why the knowledge and understanding of the people who know a person best is so important when assessing a person’s capacity. It is also why the issue of consent can sometimes be problematic.

Rightfullives

We are currently working on how to manage the issue of consent for the Rightfullives.net exhibition. We have developed a consent form for people who have no difficulty in understanding written text and we have created an easy read version for people who prefer a more visual approach, but who nevertheless have the capacity to decide for themselves whether or not they want to take part in the exhibition. But what about people who may or may not have the capacity to decide for themselves? How do we encourage and manage the participation of people whose capacity to choose and to consent may be as nuanced as Steven and Mikey?

I am currently thinking of submitting some of Mikey’s photos to the exhibition as a stop-motion video. When I ask Mikey if he wants to take part, how I ask him will have a significant effect on the likelihood of him being able to make an informed decision and the kind of answer he would give. There are a number of ways in which I could approach the issue:

1.       I could simply say something along the lines of: “Mikey would you like some of your pictures to be used to make a stop-motion video for an online exhibition about the human rights of people with a learning disability”;

2.       I could create an easy read invitation asking him the same thing

3.       I could break the process down into its components and then get his permission to do each element at the time that each decision needs to be made.

I’m pretty sure that neither of the first two approaches would be successful in helping Mikey to make a decision, so I’ll probably opt for the third approach. Which as I see it would involve four stages.

The first stage of co-producing Mikey’s exhibit would be to select a number of his photographs and use them to create the beginnings of a very simple stop-motion video. So, I would put a small selection together and show him what I was doing. If he approves I’ll continue if he doesn’t I’ll accept that he does not want me to take his photos and use them in this way.  Let’s presume he’s OK with the idea.

The second step would be to encourage his involvement in selecting the images that we are going to use. There may be some that he would be perfectly happy to use and others that he wouldn’t. For example, I would be very surprised if he were to select an image of him, although you can never say never.

The third step would be to ask him if he likes the final exhibit. If he does I’ll upload it to the exhibition space.

The fourth and final step would be to test to see if he is happy with viewing it online and if he is, he and I will be displaying an exhibit in the Righfullives Exhibition.

The principle behind deconstructing the consent process in this way is that it makes understanding what taking part in the exhibition means in a way that is less dependent upon formal language. For Mikey the process of taking part in the exhibition will be broken down into concrete steps and his participation will be dependent upon him consenting to each step.

There are issues with adopting this approach. Some may well argue that Mikey is being led from one step to another and that whilst he may have the capacity to make a decision about each element, this doesn’t mean that he understands what taking part in an exhibition actually entails. And they may well be right which is why, at each stage I would not only be asking him about whether or not to participate in each step, I would also be making a judgement about whether or not his participation is in his best interests. In this way he is not being compelled to take part in something he doesn’t want to take part in but at the same time a judgement is being made about whether or not a decision is likely to cause him harm.

This is just one example of one approach to the issue of consent. As a collective we – the people who are pulling together the Rightfullives exhibition – do not have a set of guidelines stating how you should or should obtain the consent of all involved in the production of the exhibits that you submit; but we do expect you to have used your understanding and insight, to do your utmost to involve people in the co-production of exhibits and in obtaining consent. And where this is in doubt, we expect you to do your very best to ensure that a person’s participation in the exhibition is ultimately in their best interests.

(Click on the link to download an easy-read version of this blog in Word.)

Capacity Consent Rightfullives Easy Final

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The cost of life and freedom

I was going to blog about Winterbourne View. As I start writing this, it’s 7 years since the programme was broadcast and it seems like more. I’d probably have gone on about how Transforming Care isn’t delivering anything like what it promised and how trying to change a system that costs £1.2 billion a year with £30 million spread over 3 years is like trying to turn around a super-tanker with a rowing boat – an exercise in futility. The problem is that most people don’t care and those that do already know that Transforming Care isn’t delivering. I guess the question is, in the context of that failure and in the dark half light that has followed the publication of the Learning Disability Mortality Review where do we, the people who want things to be different, go next? Is it time to do what Neil Crowther has suggested and to change the way in which we talk about learning disability – focusing more on solutions rather than personal stories of struggle – or should we agree with those like John Lish who argue that Transforming Care needs to be given more time to deliver and that it is too early to write it off. The problem is that people with learning disabilities aren’t locked up because of the way in which we campaign to get them home and nor are they dying so many years younger than their peers because government policy hasn’t been given time to bed in, it’s about politics, economics and the cost of life and freedom.

In a recent report Securing the Future published by The Health Foundation and the IFS it was shown that:

“over the last eight years health spending has grown more slowly than in any comparable period since the NHS was founded.”

That:

“Across the UK as a whole, public spending on adult social care fell by nearly 10% between 2009–10 and 2016–17”

And that:

The burden of disease is also increasing. The number of people living with a single chronic condition has grown by 4% a year while the number living with multiple chronic conditions grew by 8% a year between 2003−04 and 2015−16. Looking forward, more of the UK’s population will be living with a chronic disease and very many with multiple conditions. This is because while life expectancy has been increasing, healthy life expectancy has not kept pace and the period of people’s lives spent in poor health has increased; particularly for the poorest. As a result, without major progress on the vision set out in the Five Year Forward View, over the next 15 years spending in acute hospitals to treat people with chronic disease is expected to more than double.

All of this whilst the government remains committed to maintaining the country’s position as a relatively low tax economy. A key component of that low tax commitment has been the drive to reduce expenditure and improve productivity in areas where government spending is high. This has meant cuts to social care and welfare spending and minimal growth in health spending despite rapidly increasing demand.

The combination of increased pressures on budgets, a political commitment to a low tax economy and a commitment to increased private sector involvement in the delivery of NHS services has created an political and economic milieu that makes it almost impossible to deliver a significant transformation in the lives of people with learning disabilities. How can a government tell a Doctor that they need to spend more time on their appointments with people with learning disabilities when they are also telling them to see more people for less money. How can they tell a local authority that it has to invest more on intensive support in the community when they are also telling them that they have to cut spending by tens of millions and the contradictions don’t end there.

Within health the drive to improve productivity has gone hand in hand with a growth in the role that for profit private sector providers have come to play in the provision of services.

Spending on private sector mental health service providers (mainly in-patient care) increased by 12 per cent (£126 million) between 2010/11 and 2012/13, while spending on mental health services provided by NHS bodies fell by 2.5 per cent in real terms (£17 million) over the same period.  

https://www.kingsfund.org.uk/projects/verdict/nhs-being-privatised

The rationale behind increasing the role of private sector is simple, excess capacity in the private sector doesn’t have to be paid for (at least not directly), whereas excess capacity in the public sector does. It is theoretically far easier to make the money follow the person as they move from inpatient setting back into the community. The theory is fine but as we argued in “A Trade in People” the decisions of the private sector have to be driven by the needs of their businesses. Directors are required to act in the interests of their shareholders and decisions that are made in the interests of a business aren’t always easy to reconcile with the needs of the people who use a service.

Nevertheless, the government has attempted to put more funding into CCGs as part of Transforming Care. According to a Freedom of Information request that I made last year NHS England is expecting to spend £66 million less on specialist commissioned beds and it is envisaged that the funds released will then be made available to CCGs to support their spending on community support and infrastructure. If NHS England meets those targets, then most but not all Transforming Care Partnerships can expect to see a rise in funding made available to their CCGs to spend on community support.

Whilst the NHS England data seems to be good news it is important to remember that this funding only becomes available to CCGs after specialist commissioned beds have been closed and the commissioning authority is no longer paying for the previously commissioned service. So, the bulk of the work that is required to get people out of hospital is technically unfunded. In some cases, this may not matter but for a great many people an enormous amount of work needs to take place for the transition from inpatient hospital to community to take place. Aspects of this were raised in an excellent report produced by  VODG (Voluntary Organisations Disability Group) – Transforming Care the Challenges and the Solutions which made the following recommendations.

These give some insight into the complexity of the work that is involved in the process of getting people out of this kind of provision. If you add to that the clinical work that needs to be done in supporting the individual and the support that should be being provided to families and friends (and which isn’t), it is clear that the missing piece of the government’s Transforming Care master plan has been the lack of sufficient up-front investment in the work that needs to be done, to get people home and to keep them there. The £30 million of transformational funding is a fraction of what the 48 Transforming Care Partnerships needed to get this work done. Many didn’t receive any funding at all and having read most of the original plans, I’m pretty sure that none received all of the funding that they bid for as part of those plans.

Most of the original Transforming Care Plans were written in good faith and with the horror of Winterbourne View very much in mind. Most involved extensive consultation with local communities and a significant amount of work. The decision not to properly fund those plans was political and economic just as the decision not to properly implement the recommendations of CIPOLD was political and economic – there is a cost to the lives and freedoms of learning disabled people that central government simply isn’t prepared to pay.  So, when NHSE and the Department of Health and Social Care start blaming everybody else for the lack of progress on Transforming Care and for the high mortality rates for learning disabled people remember that if they had wanted these targets to be delivered – they’d have funded the work.

I guess I did end up blogging about Winterbourne View after all.