Editorial

Citation

Mantell, A. and Simonson, P. (2011), "Editorial", Social Care and Neurodisability, Vol. 2 No. 4. https://doi.org/10.1108/scn.2011.56102daa.001

Editorial

Article Type: Editorial From: Social Care and Neurodisability, Volume 2, Issue 4

Welcome to Volume 2, Issue 4 of Social Care and Neurodisability. This quarterly journal aims to be a single source of knowledge on legislation, best practice and research for those working with, and affected by, neurological conditions. This issue has a strong focus on policy, with two papers on personalisation and one on The Law Commission’s review of adult social care law.

In the practice section, Simon Duffy, one of the instigators of In Control, the highly influential group in the development of self-directed support in the UK, discusses the rise of personalisation. He considers how the institutional nature of adult social care evolved and how the disability movement’s challenges to their exclusion have led to development of the personalisation agenda. Simon argues that these changes involve a shift in professional culture from a “gift” model to one in which the recipient is seen as an active citizen having control and making choices in their life. Ambivalence about the purpose of personalisation can be seen to be at the heart of many of the discrepancies in how it is implemented. As he observed: for some, personalisation is about entitlements and citizenship, for others it is merely a new technique for delivering services.

In the second practice paper, Stephen Nutt and Lauren Limb discuss the findings from two studies by Rare Disease UK, a multi-stakeholder alliance for people with rare conditions and those who support them. The reports explore the experiences of people with rare conditions and their families and how practitioners can best support them. The studies highlight that there are significant gaps in meeting people’s medical, psychological and social needs. Issues include difficulty in gaining a timely and correct diagnosis and then a lack of information about how to live with, and manage, the condition. Only 24 per cent of people surveyed had received help with financial matters, yet 61 per cent of carers had found that this role affected their ability to sustain paid employment. The studies produced 27 recommendations, one of the most crucial ones being the need for good multi-disciplinary working and co-ordination of care. Stephen’s article illuminates that such complex conditions cannot be managed in an ad hoc way but require strategies, not just at a local, but at a national level. All four of the UK nationals have now committed to producing such a strategy, with public consultation expected later this year.

In the research section, Rudi Coetzer, Emma Carroll and Jean A. Ruddle undertook research into the relationship between depression, anxiety and employment following traumatic brain injury. In a study of 62 adults, approximately 99 months post injury, they found a significant association between them experiencing depression and unemployment. Perhaps, surprisingly the same degree of association was not found between their levels of anxiety and employment. As the authors point out, these findings do not establish causality and these emotional factors must be considered together with the impact of other factors on employment such as the cognitive and behavioural consequences of the injury, social exclusion and stigma. Nevertheless, practitioners need to recognise the additional support that they are likely to need if they are successful in gaining employment. As Bricout and Bentley (2000) found, people with ABI were viewed less favourably than those without such a disability by prospective employers. Wehman et al. (2000) have argued that supported employment rather than re-training seems to be particularly appropriate for people with traumatic brain injury and can help to alleviate some of the anxieties for employer and employee alike.

Geoff Morgan draws from his ongoing PhD study to consider the development of advocacy into a profession. He documents its rise from its roots in spirituality to its current statutory incarnations; the independent mental capacity advocate and the independent mental health advocate. Drawing on case material, he demonstrates how comprehensive consideration of the individual’s best interests (including spiritual) is at its core, but that its complexity also necessitates a high level of reflectivity on the part of the advocate.

In contrast to Simon Duffy’s consideration of personalisation, Thornton highlights some of the legal dilemmas presented by the government’s vision of providing “[…] personal budgets, preferably as direct payments, to everyone eligible within the next two years” (Department of Health, 2010a, p. 4). As he points out, as Local Authorities shift to only meeting substantial and critical needs, under the Prioritising Need Putting People First guidance (Department of Health, 2010b) then many are going to feel that the much vaunted flexibility of direct payments may be chimeric. He cites the example of R v. Royal Borough of Kensington ex parte McDonald [2011] UKSC. Mrs McDonald wanted a carer to help her to the toilet at night, but the local authority redefined her needs as the ability to urinate safely at night and that incontinence pads were a reasonable way to meet that need. The Supreme Court’s upholding of this decision makes it hard to reconcile the practice realities with personalisation’s laudable aims of promoting choice, control and dignity.

It is in the context of these economic imperatives that the Law Commission has been undertaking a review of adult social care law in the England and Wales. In the first issue of Social Care and Neurodisability, Tim Spencer-Lane outlined the key proposals in the Law Commission’s public consultation on the future of adult social care law. Now he is able to summarise the final report, which has been presented to Parliament. It proposes to replace the current framework of adult social care law which is based upon the National Assistance Act 1948, with a three tiered system. The first tier would set out the core duties and powers of local authorities. The next tier would consist of the regulations from the Secretary of State or Welsh ministers, providing more detail and allowing for future policy developments. The final tier would consist of codes of practice to consolidate the implementation of the legislation. Of particular interest in their recommendations is the long overdue removal of the requirement for carers to provide regular and substantial care. Perhaps, more surprisingly, it does not include provision for emergency or compulsory safeguarding powers, as have been introduced in Scotland (The Adult Support and Protection (Scotland) Act 2007).

In the review section, Felicity Pilcher looked at The Patient’s Brain: The Neuroscience Behind the Doctor-Patient Relationship, by Fabrizio Benedetti. Whilst Benedetti focuses the doctor-patient relationship, Pilcher points out that his approach would also be valuable to other practitioners. In particular, the emphasis upon the impact of the professional’s behaviour upon the patient’s brain and their subsequent behaviour and the importance of good communication and empathy are crucial elements of any relationship.

G. Roser’s book Mediation and Movement: Structured Therapeutic Activity Sessions, is a workbook that Normal Johnson found offered some interesting ideas on activities, as diverse as martial arts, and therapeutic writing. However, Johnson found it to be strongest in its exploration of meditation, which could be particularly helpful for people with neurodisabilities.

The excellently titled ADHD – Living without Brakes, by Martin L. Kutscher, with illustrations by Douglas Puder, provides an accessible exploration of attention deficit hyperactivity disorder (ADHD). It is aimed primarily at parents and carers, but it was the chapter specifically for young people with ADHD that Niall Daly found to be exceptionally valuable, as it managed to be clear, respectful and empathic. In the book ADHD is viewed clearly as a neurological condition, for which parents should not be blamed. Parents and carers are, however, cautioned to be aware that they can amplify the challenges that ADHD can raise. Daly found that the book’s reflective and contextualising approach provides a constructive resource that would be extremely helpful for anyone affected by ADHD.

The Department of Health’s (2010a) Vision for Adult Social Care, recognises that the current economic climate creates challenges for its vision, but views the solution as coming from communities; the government’s vision of a Big Society, which is the subject of Keith Jenkins polemic in the Forum section this week.

Andy Mantell, Patti Simonson