Treat people as patients and they will behave as patients, responding passively, potentially grudgingly or aggressively to an imposed regime. Treat people as citizens, with rights and responsibilities, and they have the opportunity to make considered, meaningful choices about whatever behaviour works best for them and the people around them.
These notions may appear self-evident in the general population, even more so in an environment where patient-centred healthcare is routinely evoked. They may be less readily applied, though, to people with learning disabilities who may present challenging behaviours, and particularly in a hospital setting ̶ albeit one whose end-goal is successful reintegration into the community.
As Dr Jeremy Tudway, Consultant Clinical & Forensic Psychologist for The Huntercombe Group (THG), notes, the transition from patient- to citizen-oriented care for the learning-disabled essentially goes back to the UK government’s Transforming Care agenda, introduced in 2012.
In fact, Transforming Care was the latest in a series of legislative steps, extending as far back as the Better Services for The Mentally Handicapped white paper of 1971. In outline, these initiatives sought to move people with learning disabilities, wherever possible, out of long-stay hospitals and into a valued life in the community, supported by adult training programmes and work placements.
The care infrastructure for the learning-disabled followed a similar course, with the closure of long-stay facilities during the 1980-90s. Strategic direction and legal validation came with, respectively, the Valuing People policy paper in 2001 and with amendments to the Mental Health Act in 2007. These latter removed learning disabilities per se as grounds for detention under the Act, unless they were associated with abnormally aggressive or seriously irresponsible conduct.
Reducing dependence on long-stay facilities in managing learning disabilities, also requires a supportive infrastructure and services to ease the transition from hospital to community living. The philosophy behind Oakwood House, a community housing service recently opened by THG in Stoke-on-Trent, Staffordshire, is to extend rehabilitation services for people with learning disabilities who have been long-term hospital residents, and whose behaviour could present challenges.
Patient to citizen
The Oakwood House site was previously commissioned as a low-secure hospital for people with learning disabilities. The new care model, Dr Tudway explains, is a bridge between “my journey within the hospital, where I am a patient” and “my journey outside the hospital, where I am a citizen”.
As citizens, people with learning disabilities acquire both the right to make decisions for themselves and the responsibility of acknowledging that choices must be “realistic”, Dr Tudway observes. This is in contrast to a traditionally paternalistic system in which the learning-disabled, as passive ‘non-citizens’, come to expect that everything they want will be granted.
Frustrations and conflict inevitably ensue when limited health- and social-care resources are unable to deliver on those expectations across the board. With the right and ability to make active choices, the learning-disabled can have access to the services they need, along with the necessary support to develop life skills and a lifestyle that will reduce reliance on those services.
Achieving those goals calls for a fundamental overhaul of relationships between carers and clients. “We don’t engage people in a way that is ‘done to’, we engage in a way that is ‘done with’,” Dr Tudway comments.
This approach is closely aligned with the implementation of Positive Behaviour Support (PBS) strategies as a core component of care at THG facilities over the last few years. Residents at Oakwood House are “absolutely central” to the PBS programme, including participation in designing their own PBS plan, Dr Tudway stresses. That may involve, for example, determining the best way for a resident to calm down when upset.
Rather than repressing or punishing challenging behaviour through restrictive interventions, PBS considers behaviour as functional (e.g., an expression of frustration, discomfort or boredom), and looks for positive alternative behaviours capable of fulfilling the same objectives without presenting a challenge.
As Dr Tudway notes, PBS is not so much about engineering behaviour as changing how positive behaviour is reinforced. Any programme of change must understand that challenging behaviour, however disruptive, may reflect a traumatic learning history. Trying to erase behaviour that has deep and complex roots is ultimately self-defeating.
Changing the frequency of challenging behavior is more viable, but it is highly resource-intensive and virtually impossible in a large-scale facility, Dr Tudway adds. PBS takes a more nuanced and proactive approach, by widening opportunities to learn more adaptive forms of behaviour that aid social integration.
Community living at Oakwood House is geared to personal enablement and developing bespoke services in close partnership with the Transforming Care lead for Staffordshire & Stoke-on-Trent. Wherever possible, carers will discuss rights and responsibilities with residents in terms of a tenancy agreement, rather than an imposed institutional structure.
The long-term aim, Dr Tudway says, is that residents will be offered unfurnished accommodation where they can engage in active decision-making, and establish ownership, by thinking about where best to buy a sofa, wardrobe and bed, or how best to decorate living space. Residents are also encouraged and supported in engaging with amenities in the wider community, such as learning bus routes, registering with a GP or medication management.
This more flexible model, with its emphasis on rehabilitation and promoting citizenry through realistic choices, recognises both that absence of choice does nothing to prepare residents for community integration, and that no single service can be ideal for everyone. “If you’re coming in as a tenant and a citizen, you will have a finite budget to use in furnishing your environment,” Dr Tudway comments. “If you come in as a passive recipient of a patronage-based care model, it’s like the old Fordist approach everyone gets whatever colour they like, as long as it’s black.”
Residencies at Oakwood House can last anything from six to 18 months. Significantly, a number of very challenging residents have been stabilised within six months, to the point where they can look for supported-living placements in the community.
The Oakwood House team is also working on extending its care model to a range of other settings that manage people with far more severe cognitive deficits. “It’s possible now to say, actually services can be developed for your citizens that are far more humane and person-centred,” Dr Tudway points out. “And they are not going to be prohibitively expensive.”
 Homes Not Hospitals. NHS England. Retrieved from https://www.england.nhs.uk/learning-disabilities/care/.
 Valuing People – A New Strategy for Learning Disability for the 21st Century. Department of Health and Social Care. 28 March 2001. Retrieved from https://www.gov.uk/government/publications/valuing-people-a-new-strategy-for-learning-disability-for-the-21st-century.
 Mental Health Act 2007. Chapter 12. Retrieved from https://www.legislation.gov.uk/ukpga/2007/12/pdfs/ukpga_20070012_en.pdf/.