Personalisation is dead. Long live personalisation?

A range of important and interesting perspectives on the future (or not) of personalisation have been published this week.  Starting with Dr Simon Duffy’s unfortunately titled (by the Guardian, not Simon) piece in the Guardian earlier in the week ‘Personalisation was supposed to empower vulnerable citizens. It failed’,  followed by the as ever bang on the money tell it like it is piece by Mark Neary ‘The Personalisation Problem’ and then finally today a powerful future facing piece by Martin Routledge, Alex Fox, Miro Griffiths & Vidhya Alakeson  ‘Personalisation – give up or move on?’

Meanwhile Jenny Morris has provided a critically important reminder of where this whole agenda originally came from ‘if you don’t know your history, you’re like a leaf that doesn’t know its part of a tree.’

And finally, this is a wonderful blog from Max Neill, ‘The Plight of the Systemister’ Max asks ‘ I wonder whether we can change organisations and systems …. by allowing humanity, and the power of human relationships to really take root, in those little cracks in the system we open up every time we use person centred approaches to appreciate and listen well to people?’

I really hope so.

 

The prisoner’s dilemma, the Founding Fathers and the disabled people’s movement

By Rich Watts

Disabled people face perhaps the greatest range of challenging circumstances for a generation – individually, collectively and cumulatively. This is likely to remain the case in 2015 and beyond. There is a pressing need to discuss and articulate what equality for disabled people should look like, what needs to be done to get there, and who should contribute to getting there. Inevitably, and rightly, there are lots of different views about what might need to happen, but this is underpinned by a joint desire for the lives of and opportunities for disabled people to improve.

I think the disabled people’s movement of today can learn a lot from a famous game theory experiment known as the prisoner’s dilemma, as well as repeat the success of how the Founding Fathers of the United States navigated what equated to their own example of the prisoner’s dilemma to achieve our own equivalent aims.

The prisoner’s dilemma is summarised as follows:

There are two prisoners, A and B. Each is kept in solitary confinement and has no way of contacting the other. The police give each prisoner the opportunity either to betray the other or to cooperate with the other by remaining silent, which leads to the following scenarios:

  • If A and B both betray the other, each of them serves 2 years in prison
  • If A betrays B but B remains silent, A will be set free and B will serve 3 years in prison (or vice versa)
  • If A and B both remain silent, both of them will only serve 1 year in prison.

In this simplest form of the prisoner’s dilemma, the best course of action for both A and B to take is to stay silent; that is, to cooperate with each other in their mutual interest.

A huge number of experiments and even tournaments of more complex forms of the prisoner’s dilemma have been run to try and determine what the best strategy is to consistently get the best collective outcomes. These versions introduce multiple “prisoners” facing the prisoner’s dilemma over and over again with prior knowledge of how each other acts. The results of these experiments are that “greedy” strategies (i.e. behaving only in your own interest) do very poorly in the long run, whilst more “altruistic” strategies (i.e. cooperating) do much better.

Being a bit of a US history geek, I’ve often thought that the Founding Fathers of the United States faced their own kind of prisoner’s dilemma.

All of the representatives who, in the face of British imperialist power, made the Declaration of Independence in 1776 and then developed and adopted the US Constitution in 1787 had different views on what the new country should stand for, what it should look like and how it should operate. For example, any cursory glance at what Thomas Jefferson and Alexander Hamilton respectively thought would give a flavour of just how far apart some of the delegates were on vital issues. But despite significant differences, all of the Founding Fathers were able to balance their views and coalesce at a crucial point in time to establish foundations that, with some changes (via a process built into the foundations, including the US Constitution), have withstood the test of time.

The lessons from and parallels with the prisoner’s dilemma and the Founding Fathers for the current disabled people’s movement are, I think, clear.

Any progress we make will take time (there was over 10 years between the US Declaration of Independence and the writing of the US Constitution) and any process will need to have flexibility built in. But, if we’re to learn from the prisoner’s dilemma and the Founding Fathers, we will all be better off if each relevant person and organisation cooperates and works together to the ends we all share.

About the author

Rich’s interest in disability rights and equality has been informed from a range of perspectives, including as a mental health service user and carer, in the voluntary sector and in local and national government. He also blogs at Arbitrary Constant (http://arbitraryc.wordpress.com).

Doing assessments together

By Simon Stevens

As someone with cerebral palsy, I have had assessments in one way or another for almost 40 years, some were great and some were terrible. In the context of this article, an assessment may refer to any social care, health and other gateway process to funding or services, and I am going to discuss how I think assessments in general should be organised and delivered in whatever situation.

I think it is firstly important to briefly look at the history of assessments within social care to see where the future lies. The first kind of assessments were ‘service-led’, which basically meant social services provided a specific bog- standard service and you either were eligible for it, or not. The assessment was so primitive that it was often never formalised and services were just delivered with little regard for the users.

The 1990s saw a revolution in social care assessments as we entered the era of ‘needs-led’ assessments. Service users now had their own care plan and they were individually assessed to have their specific needs met. Despite being revolutionary in its time, I slowly realised that there was a problem since what was need? What does a person actually need? Do I need a shower when I can manage with a body wash? Do women need make-up? As social services departments got their head around ‘community care’, the wonderful breakthrough of need was turning sour, as councils used need against users, using ‘equality’ to build a lowest common denominator of need that ignored the person.

In 2005 onwards, we had individual and personal budgets, that started to look at ‘outcomes-led’ assessment, which I believe we are still getting our heads around. There were always outcomes, but they were kept secret and remained the property of the funding bodies. Now users were being asked what their needs are and I think the full impact of outcome assessments have not yet been realised.

Outcomes are a very important way of defining what someone needs and therefore what solutions may be relevant to them. I would suggest there are 3 types of outcomes. The first is basic outcomes, which may be seen as hygiene outcomes, in that they are only noticed when they are not delivered and what stops people going backwards, and may include good health, a clean and tidy home, a safe place to live and so on.

The second would be activity outcomes, which are the concrete daily activity someone wishes to do like education or work, where support is provided on the basis they are doing that activity. If the activity ceases, so does the support. The final type of outcome is aspirational outcomes, the things we strive to achieve, often knowing they may never be fully achieved like to be happy and contented, to be rich, and all those big dreams that help us move forward.

What is important to understand is outcomes may be recorded in an assessment by a specific funding body or service provider but the suggested solution and who provided that may be recorded as someone else. In many cases, the person who can deliver their outcomes, especially aspirational outcomes, will be the service user themselves.

The key to any good assessment is co-production, the idea that the support plan is produced and equally owned by the service user and assessor. I think it should be mentioned that while there has been a fashion towards ‘self-assessment’, that concept of self-assessment is incorrect and legally not possible: no organisation is going to allow someone to have what they want unchallenged. I have always feared that when self-assessment has been adopted in good times, it will raise greater suspicion in bad times as professionals may find it harder to trust. I believe coproduced support plans are far more stable as both sides have agreed to them.

This leads me to where I believe the whole assessment process should be going, which is interdisciplinary teams that support the total impairment-related living support someone needs, which may include services and funding to support people with daily living, mobility, long term health needs, education, training, employment and so on.

I believe local specific teams could support people through distinct parts of their life journey in particular pathways such as from a car accident, through rehabilitation, and back into full employment. Another example would be someone with a life-long impairment, being supported through education, university, independent living, employment and so on. The focus will always be on people’s specific outcomes.

These sorts of teams already exist but are too few to make a massive difference to the nature of impairment support. Five years ago I had an acute nerve virus that left me temporarily paralysed from my naval downwards and in chronic pain. While my discharge from hospital was very poor, I fought hard to get rehab and I am very fortunate to be successfully referred to my local Community Neurological Rehabilitation team. People who know me know I do not praise people without good reason, especially not where people are just doing their job, but this team was truly amazing and was a perfect example of the person-centred outcome based teams I am now advocating.

The team was made up of professionals from a number of backgrounds, with a physiotherapist being my ‘key worker’. They focused on the goals I set myself and allowed me to be in the driving seat. The amount of physio I had, in my own home, changed week by week depending on what I needed and indeed wanted. I communicated with the team by email, my preferred method, and appointments were made to fit around my schedule. Other professionals were brought in as they were required and equipment was brought in as I needed it and more importantly taken away when I had finished with them without hassle.

It is hard to fully describe the dignity and control the team gave me but I think it shows how assessment processes should be organised and services developed, where it is customised to the situation and preferences of the person it is about. To deliver this en mass would require a major reorganisation of services from various departments, and a major shift and merging of the various cultures in which different parts of impairment support is provided. It would also need professionals to engage more with users, to provide users with more confidence and believe in their human potential with the endless possibilities that brings. This also means that while professionals should see users as partners, they also need to feel more confident to challenge users who are unwilling to consider their responsibilities.

This article is just a starting point in what could be a huge discussion in the whole future of impairment support and how co-produced assessments play an important role in this.

 About the author

Simon Stevens is an Independent Disability Issues Consultant, Trainer and Controversial Activist with Cerebral Palsy.

 

Independent Living, Psychiatric System Survivors and ‘Mad Matters’

By Peter Beresford

As a mental health service user/survivor, I have always valued the idea and philosophy of independent living developed by the disabled people’s movement. But I have also regretted that it has largely passed the survivor movement by because this has left us vulnerable and exposed. Let me explain.

The philosophy of independent living has gained international significance and had international impact. Building on the social model of disability it has challenged traditional free market views that all of us should ‘stand on our own two feet’ as isolated individuals.  Instead it has highlighted that we are all interdependent and for anyone to be independent, particularly as a disabled person, then they need the support that makes it possible for them to live on as equal terms as possible as non-disabled people. They also need equal access to the mainstream world through the removal of disabling barriers.

Survivors historically haven’t developed either an equivalent of the social model of disability or the philosophy of independent living. I believe we are now paying a price for this. Instead, the professional-led idea of ‘recovery’ has become central in government mental health policy and practice and while it seems to offer mental health service users some positives, I believe ultimately it is taking us down a damaging and wrong road. Of course it’s great that recovery suggests that mental health service users/survivors shouldn’t be written off and can contribute and be active citizens. But it is based on an inherently medicalised model of ‘getting better’. This has two worrying implications. First, governments like the current Coalition, measure getting better in terms of being off benefits and in paid employment – when we know that the labour market is discriminatory, damaging and devaluing of service users. Second, policymakers are taking recovery to mean ‘getting better’ in the sense of no longer needing any help or support. Of course this fits badly with the reality of many people’s experience where, just like other disabled people, they may need some ongoing support to live fully and equally and they may have particularly bad times, even though they can get past these with the right kind of help.

All this is why a new book from Canada assumes an especial importance for survivors in the UK and internationally in these difficult times. Mad Matters*, for the first time, pulls together the large and growing body of work – both activist and theoretical – that has been taking place in Canada to advance demedicalised approaches to madness and distress. The upfront use of the word ‘mad’ may be difficult for some mental health service users/survivors who have been on the receiving end of mainstream use of this term to demean and devalue them. But it is also a statement here that there is a commitment to reclaim both language and experience, that people are determined not to be coopted by the psychiatric system and that their critique seeks to stand outside it. This has rarely happened before and certainly not in such a far-reaching way as is represented by this book.

In my view it provides the most substantial, well-evidenced and inclusive discussion there has so far been of non-medicalised user-led understandings of madness and distress. It offers major insights internationally from the Canadian experience. What is also particularly helpful is that it draws on the perspectives of service users, practitioners, educators, researchers, activists and policy people. This is a really substantial book by people who bring professional, research and experiential expertise to the subject. It highlights the diversity of mad experience and viewpoints, the destructive impact and ineffectiveness of psychiatry, the emergence of survivor research and academic engagement. It helpfully problematises seductive but ultimately damaging ideas like ‘recovery’. Apart from its value for all concerned with ‘mental health’ issues – on both sides of the counter – it is likely to be of value in building bridges between survivors and disabled people, between disability and mad studies and between disability and survivor activism.

*Mad Matters: A critical reader in Canadian mad studies, (2013), edited by Brenda A. LeFrancois, Robert Menzies and Geoffrey Reaume, Toronto, Canada, Canadian Scholars’ Press Inc ISBN 978-1-55130-534-9  380pp  Price $49.95 Canadian  http://www.cspi.org/books/mad_matters

About the author

Peter Beresford is professor of social policy at Brunel University and chair of Shaping Our Lives, the national disabled people’s and service users’ organisation and network