The right to live untidily

I chaired two lively fringe meetings at the Lib Dems and Conservative party conferences at the invitation of the ResPublica think tank. Both discussed the relationship between choice and making social care personal. Most people at these discussions were positive about the principle of being able to make choices about services. One attendee pointed out that “those with least control or power should have the most choice” and there was concern about the extent to which cut backs in advocacy services were stymieing attempts to redress the power imbalances in our system, or replacing them with new power imbalances and bureaucracies, or even “new lies”, in which people had the illusion of choice, but no new services from which to choose. There was also concern about the “lie” of offering choice without responsibility. Council and NHS Finance Directors remain legally responsible for balancing budgets and are understandably reluctant to create a system in which individuals might be able to make expensive choices which take no regard of limitations on resources.

One way past that impasse is to recognise that a policy of introducing personal budgets and Direct Payments does not, on its own, change the status of people who use services. Discussions can still be about what “we”, the expert professionals, are going to let “you”, the service user, have to meet your needs. Instead, we need to create a system of shared responsibility for the use of resources and this is often done best where individuals are helped to pool budgets, or to come together with community groups, so that there can be a collective discussion about how people will make best use of all kinds of resources, including money, but also including people’s time, and the collective expertise of people who use services, their families and communities. The key to a good life is not just what we choose to receive, but also what we choose to contribute to those around us.

One participant told a story to illustrate how far we can sometimes be from that picture. An older person was entitled to a Direct Payment to buy support. Her pet dog was her constant companion and one of the most important things in her happiness and well-being. She was told that she couldn’t use her Direct Payment to pay for dog walking, which she often was unable to do herself, but also that if she was able to walk her own dog, then clearly she was not really in need of a Direct Payment to pay for a support package. The choice she was offered was effectively, don’t receive support, or get rid of your dog. Regardless of the lack of compassion or respect for choice in this situation, professionals were also ignoring large amount of evidence about the health and well-being benefits of having a valued pet. This kind of ‘choice’ was referred to by one speaker as Orwellian ‘double speak’.

The discussions came back a number of times to tension between offering or negotiating personal budgets and the risk of ‘commodifying’ care. Some people, particularly those who have only physical support needs, are happy to manage a package of care which has little emotional element. The support is just there to facilitate that individual’s ordinary life, such as going to and from work. An individual in that situation might want no more emotional support from a care worker than they do from their hairdresser. But for others, the emotional element of care – of caring – is vital to living a good life. We package that relationship as a commodity to be purchased at our peril.  

Care Minister Norman Lamb MP, spoke of the liberal values of giving power to individuals and avoiding paternalism, but also noted that people are currently worried about services, including those often labelled as ‘traditional’, from disappearing without a guarantee of what was to replace them. Another speaker noted that currently, some people are over-supported as well as there being many who are under-supported. Helping people to change their care and support package as their needs change, and reducing people’s fear about losing hard-won entitlements to support, are crucial elements of helping people to make genuine choices, which aren’t based on fear.

Another speaker noted that the current reductions in budgets available to organisations who are tendering to provide services may bring in ‘new’ providers, but not necessarily services which would be people’s preferred choices. Stephen Dorrell MP, Chair of the Health Select Committee, cautioned against approaching care and health as an ‘actuary’ and noted that there has been a lot of positive progress over the last 20 years, away from institutional care, but that sustaining that during the next 20 years will require a great deal of imagination, particularly when it comes to integrating health, care and housing. Few people would choose to have those elements of their lives treated as if they are entirely unrelated, so integrating support services (and welfare benefits) in the same way that people’s lives are integrated, is essential to offering genuine choice. As one participant put it, most of our lives are “messy” and full of change, whereas services can often treat us as if we should be living ‘neat’, unchanging lives. How do services and local planners learn to let go of some of their power to impose ‘neatness’ and instead to live with the risks – and benefits – of people living ordinary, untidy lives?

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