Dale, C. and Moore, D. (2011), "A stronger voice for patients?", Journal of Learning Disabilities and Offending Behaviour, Vol. 2 No. 3. https://doi.org/10.1108/jldob.2011.55402caa.001
Emerald Group Publishing Limited
Copyright © 2011, Emerald Group Publishing Limited
A stronger voice for patients?
Article Type: Editorial From: Journal of Learning Disabilities and Offending Behaviour, Volume 2, Issue 3
On the 3 August 2011, Andrew Lansley announced plans designed to ensure patients have a stronger voice in health services. About 75 local “Health Watch” pathfinder schemes drawn from across the country will champion patient’s views and experiences and improve choice for patient through advice and access to information. These organisations will supersede the short-lived local involvement networks an initiative by the previous government to achieve similar goals.
Arguably, the positive impact this and similar schemes will for people with learning disabilities in healthcare, and in particular, those at risk of offending may be marginal at best. However, this should not prevent us from pursuing the primary intent of these programmes which is to achieve a stronger voice for patients in service design, delivery and evaluation.
Having access to information about your healthcare and treatment is widely regarded by most people as a fundamental right. However, for many people with learning disabilities the availability of information about their own care in a preferred format cannot be guaranteed. Whilst health providers have improved the availability of materials in a range of languages, having access to good “easy read” or even plain english materials can be patchy.
Taken at an individual level, some patients are still presented with key documents such as care plans in formats that neither aid understanding nor encourage choice. Problems range from excessive use of jargon or clinical abbreviations to presentation issues such as type font. Similar problems exist in the criminal justice system with around four-fifths of prisoners with learning disabilities reporting problems reading prison information.
Whilst services have often developed easier to read general materials such as service information leaflets, the work on an individual level is often more patchy. Part of the problem lies with the fact that professionals who work in these settings have often not had any training or support to create more accessible materials. Compounding these problems can be difficulty in accessing advice from speech and language therapy. This, often scarce resource, is invaluable in the process of assessing need based on the individuals cognitive abilities and sensory capabilities.
In a busy working day, setting aside time to translate even one person’s care plan may seem a monumental task. Until recently, there has also been a lack of suitable images to adequately portray the situations, questions and concepts relating to offenders with learning disabilities. For example, being arrested, appearing in court or prison reception processes. However, the recent launch of a specialist set of images by CHANGE, a human rights organisation for people with learning disabilities provide a new resource to support professionals in this area.
Similarly, the library of “Books Beyond Words” available through the Royal College of Psychiatry contain useful titles such as “You’re under arrest” and “You’re on trial”.
This edition contains papers that describe the positive outcomes to be gained by engaging patients and providing materials that support increased choice and control. The first by Hall and Duperouzel describes the use of a screening tool to support user involvement in the risk assessment process. Using human rights principles, it helps them the service user to explore their how they view their personal risk and promotes a collaborative approach.
The second paper by Goodman et al. reports on the development of a cognitive behavioural treatment programme that has been adapted to suite people with mild to borderline learning disabilities. This work considered the barriers to people with learning disabilities accessing traditional enhanced thinking skills programmes which included the issue of complex materials that have high literacy requirements.
This paper also reminds us that many people with learning disabilities can be excluded from treatment programmes because of poor skills in reading and writing. There is now a clear obligation on services as described in the Equality Act 2010 to make reasonable adjustments to ensure that people who are disabled are not substantially disadvantaged. One could suggest that the lack of provision of easier to read materials to support treatment places learning disabled people at such as disadvantage.
This premise, of failing to make a reasonable adjustment for a disabled person, was tested last year in the landmark case of Dennis Gill. Mr Gill who as an intelligence quotient of 65 had been diagnosed with a learning disability and because of this he was unable to make use of offender management courses aimed at the general population. The prison service was found guilty of disability discrimination because it had failed to take steps including education and adapting courses to help Mr Gill take part in this work.
Giving people the tools to become active in their own healthcare is an important goal for all health services. In learning disabilities, tools such as health action plans have been around for years but use of them in secure services is patchy. Anecdotally, it would appear that in some services they have become something of a tick box exercise rather than a tool to aid the person to understand and engage in meeting their health needs. This situation needs to improve if people are to have a greater say, increased choice and control over their care and treatment.
These empowering goals of increasing choice and control support the broader aim of promoting person-centred healthcare. This has been described in respect of the NHS as supporting people with the tools, confidence, competence and self-efficacy to make decisions and manage their own health (Thornton and Sieff, 2010).
In relation to offenders with learning disabilities this will include increased availability of accessible materials, including care plans, promotion of the concept of the “expert patient” and availability of adapted programmes and treatment interventions. It will also require a relationship between clinician and patient work that is based on a trust that enables them to create a plan which has been formulated using both sets of expertise, clinical and personal.
Additional to therapeutic relationship, there needs to be a demonstration of power sharing at an organisation level. Many services have developed user forums but access to leadership programmes is less common. Unless service users have access to training and information that equips them to constructively “speak up” then forums run the risk of becoming “talking shops”. Similarly, the provision of coaching and mentoring should be part of a rounded approach to strengthening the voice of those who use services. This is not to say there is not a clear place for independent advocacy organisations or legal representation but it should be viewed alongside, not instead of, self-advocacy initiatives.
Achieving Andrew Lansley’s vision of a stronger voice for service users will, in secure services and the criminal justice system, often be difficult. The nature of such services, issues of risk and legal restrictions often reduce choice and control to a very basic level. However, practitioners through examples of their day-to-day work such as those included in this journal, are demonstrating that progress is being made and as a result, outcomes improved.
This international “flavour” of this edition is provided by clinicians practicing in Scotland and Australia.
Douds and Bantwal discuss the “Forensicisation” of challenging behaviour which alludes to the perils of people with learning disabilities and severe challenging behaviours being viewed as “forensic” patients. They comment that in Scotland, following the closure of long stay learning disability hospitals in 2005, focus has shifted on to developing robust community services/resources to cater for the healthcare needs of people with learning disabilities. In the absence of robust in-patient services, a small number of individuals with learning disabilities and associated severe challenging behaviours, despite not being regarded as “forensic” cases, do inappropriately get referred and sometimes admitted to forensic learning disability services. This study explores this area of clinical practice in the context of referrals to the high secure forensic setting of The State Hospital, Carstairs and highlights the wider issue of “gaps” within services in Scotland for such individuals and the requirement for a national specialist service.
Jo Famularo, an Acquired Brain Injury Clinician working in the Offender Management Services Corrections Victoria, Australia describes how, over the past three years, Corrections Victoria Australia has made a commitment towards better meeting the needs of offenders with a disability. Specific research has been undertaken to identify the prevalence of acquired brain injury among Victoria’s male and female population. This research for Corrections Victoria has identified new challenges, particularly, evidence concerning the large prisoner cohort with acquired brain injury. What has emerged from the first half of this pilot project is the presence of co-morbidities, including mental health and substance use issues in addition to the prisoner/offender’s cognitive impairment. This complex profile confirms the need for a specialist response and highlights how Corrections Victoria is responding to the research.
The final paper by Plant et al. focuses on the prevalence of substance abuse and its link to offending behaviour among those with intellectual disabilities. This baseline audit describes the prevalence of alcohol and substance misuse and the introduction of a Drug and Alcohol Awareness Course. Findings are discussed in relation to service planning and treatment outcomes from forensic intellectual disability services.
1. Prison Reform Trust (June 2011) Bromley Briefing.2. www.changepeople.co.uk3. www.rcpsych.ac.uk/publications/booksbeyondwords/bbwtitlesa-z.aspx4. www.timesonline.co.uk/tol/news/uk/article7129221.ece
Colin Dale, Deborah Moore
Thornton, S. and Sieff, A. (2010), “A new interaction”, Health Service Journal, Vol. 120 No. 6212, p. 1