Whorlton Hall, Winterbourne … person-centred care is long dead for people with learning disabilities and autism

Abstract

Since the Winterbourne View abuse scandal in the United Kingdom, there have been responses and reports which have aimed at preventing this from happening again; however, more cases have emerged, including at Whorlton Hall, UK. There appears to be no hurry by the UK government to ensure a cultural shift occurs which places disabled people as the driving force in leading improvements in tackling systematic abuse in institutions that are meant to show compassion and care for people. In response, this article argues that person-centred care in its current form is out of date and needs to be scrapped in exchange for a new perspective that encapsulates People First values, which could go some way in ensuring that disabled people are no longer treated and classed as sub-humans.

Keywords:

• Person-centredness
• learning disabilities
• autism
• post-human
• dis-human

Whorlton Hall – a case of history repeating itself?

In May 2019, UK television’s Panorama¹ broadcast an investigation into alleged abuse at Whorlton Hall, a 17-bed specialist high-dependency complex care service in the North East of England, which provided assessment and treatments for people with intellectual disabilities and complex needs. This was a privately-run National Health Service-funded unit, and one of many that provide care for approximately 2300 adults with learning disabilities and autism spectrum disorders in the United Kingdom. Many of the residents in these units have been detained under the Mental Health Act 1983, but since revelations of abuse emerged, the specific service at Whorlton Hall was closed with all patients being transferred to other services.

The investigation emerged after a BBC reporter worked several shifts between December 2018 and February 2019, and covertly filmed care workers using abusive language, threats of violence and inappropriate restraint towards the residents of Whorlton Hall. For example, in one instance, at least six care workers stated during this period that they would deliberately hurt patients, with one care worker describing when they banged a patient’s head against the floor. The abuse on the residents of Whorlton Hall resonates with the scandal that took place at Winterbourne View in 2011 (Richards 2016), where in a similar setting in Bristol, and exposed by a similar undercover investigation by Panorama, people with learning disabilities and autism were subjected to verbal abuse and physical punishments by care staff. This led to the commissioning of an NHS England-funded report written by Sir Stephen Bubb, who would recommend that a charter of rights for people with learning disabilities and their families should be established alongside the creation of a commissioner, with the aim to protect and promote the rights of people with learning disabilities (see Bubb 2014, 2016).

Previously, Bubb had criticised the government for not responding to his recommendations, and once again, in response to the Whorlton Hall abuse scandal, Bubb criticised the lack of response and stated in one interview:

Institutional care is by its nature … abusive … It’s a Dickensian² way of treating some of our most vulnerable citizens … As a regular practice in these institutions, people are put in seclusion, they are over-medicated, and they are often subject to physical restraint. That is not a correct way to handle very vulnerable people. (BBC Radio Four, Today Programme, 23 May 2019)

Indeed, I agree that people with learning disabilities and autism are being excluded, overmedicated and subjected to unnecessary physical restraint, and, of course, a charter and a commissioner may contribute towards protecting the rights of people with learning disabilities and their families. However, I must reiterate what I wrote in 2016 – that whilst it is good to see reports trying to put a focus on people with learning disabilities and autism, there is still no real focus on getting to the contextual roots of the problems people face in their day-to-day lives (Richards 2016). I argued at the time that people with learning disabilities and autism should be able to make more choices, with more focus needed on the expertise and knowledge of people with learning disabilities and autism, and that they should be able to participate at every level of decision-making with regards to what happens in their lives (see Richards, Lawthom, and Runswick-Cole 2018). I also stated that commissioners and charters are another dead end because what does this really do in changing institutions who systematically abuse people with learning disabilities and autism (Richards 2016)?

Overall, there appears to be no motivation or hurry to ensure a cultural shift is forced that would ensure people with learning disabilities and autism are at the centre stage in leading improvements in tackling systematic abuse in institutions which are meant to show compassion and care for people. There is still a lack of choice, sharing of expertise and support for people to take action against the systematic abuse by the institutions that are meant to care. These are the same institutions that will say they are ‘person-centred’ and will use words like ‘empowering’, ‘inclusion’, ‘empathy’, ‘compassionate’, ‘accepting’ and ‘trust’, and this in many non/professions and by non/professionals; not just in patient care, but across teaching, management, childcare and in other walks of life. In this respect, what we understand to be ‘person-centred’ could be rendered as out of date and out of step with how people with learning disabilities and autism feel, and this must be challenged if we are to end the kind of abuse you would expect in a nineteenth-century workhouse that continues in the twenty-first century.

Person-centred care – a focus on the individual who was not a person in the first place

As someone who has worked in health and social care with young people and adults with learning disabilities and autism, I am all too familiar with the pitfalls of tagging on that you are being ‘person-centred’ to justify actions. The term ‘person-centredness’ was rhizomatic in all training, charters, policies and meetings that took place in my work, and this no doubt will be the same for most care workers of all kinds, and the very mantra of any government, institution, project or home is that the person must come first alongside their human rights. Indeed, The Care Quality Commission refer to person-centredness in their ‘shaping the future’ strategy:

Services are innovating, using technology and new ways of working to deliver care that is more person-centred. (Shaping the future n.d., 3)

It might seem odd for me to be critical of this. After all, person-centred approaches of all kinds, many dating back to the 1960s (see Rogers 1961; Leplege et al. 2007), have aimed to ‘humanise’ medicine and holistic care, and thus challenge the impersonal and disease-focused approach to medicine that ignored the experiences of illness in healthcare (Naldemiric et al. 2016). Furthermore, person-centred approaches consider social forces to be at the root of people’s problems, and through empowerment, inclusion, helping people to have a voice and providing dignity, love and care, person-centred approaches are meant to develop a self-determination to help people take control of their lives (Proctor et al. 2006; Sanders 2017; Murphy and Joseph 2019). This seems exactly what we should be doing and what should be taking place, so why are we still witnessing and reading about the systematic abuse of people with learning disabilities and autism in our care and service environments where ‘person-centred’ approaches are meant to make their day-to-day lives better?

Well, we know that our cultural history associates people with disabilities as objects of disgust or fear, and indeed pity and misfortune (Hughes 2009, 2012), ensuring that hatred for disabled people is manifested in all walks of life to this very day. We know this because of the systematic abuse taking place in places like Winterbourne and Whorlton Hall alongside the daily hate crime, stereotyping and stigma that takes place in day-to-day life, and in the health and social care and education systems. Of course, not everyone might be treated this way, but in effect, people with disabilities are treated as sub-human, ensuring that person-centred approaches cannot work properly if people with disabilities are not being treated as human in the first place.

With this in mind, maybe we need to think differently about what we mean by the ‘person’ or the ‘human’, in a similar way to recent perspectives on ‘posthumanism and disability’ and ‘dishumanism’ (Goodley, Lawthom, and Runswick-Cole 2014; Goodley and Runswick-Cole 2016). These are perspectives where the very notion of what being ‘human’ means is questioned in the context of disabilities, challenging the individualistic notions that underpin humanism where person-centred approaches were born because it questions the notion of being a ‘rationalised’ individual that creates a distinction between a good and bad human, and, indeed, disability and non-disability (see Frigerio et al. 2018). Would it not be better to develop person-centred approaches in a way that corresponds with how people view themselves, in all their flexible and multiple identities (Braidotti 2013), rather than how they should be viewed by carers, medical professionals and other people who base their work around person-centred approaches? In this respect, person-centred approaches may become more caring, inclusive and empowering, which was what these approaches were meant to be.

Scrap person-centredness for something more real and meaningful

If the premise of what I am saying was to be realised, it would suggest that we might need to scrap what we currently understand to be ‘person-centred approaches’, or at least have a complete rethink about what these approaches really mean for people with learning disabilities and autism. Therefore, any profession or professional engaged in caring for people with learning disabilities and autism, including charities, social workers, psychologists, care workers, community projects and private companies, would need to de-ideologise how they understand ‘person-centredness’ and move towards an ideology or approach that is driven by people with learning disabilities and autism, to challenge the cultural and institutional misconceptions of what disability means. It is not for me to say how this could be, but at the heart of this, in all aspects of care, the values and ambitions of people with learning disabilities and autism need to be the power. The values set out by People First is a timely reminder that for decades people with learning disabilities and autism have been calling for changes that still have not happened to the extent that is needed (see Aspis 1997):

1. Speak for yourself.

2. Stand up for your rights.

3. Make changes, be independent.

4. Take own responsibility.

5. Resist oppression by challenging people in power.

6. Have the right to challenge others and be angry.

7. Challenge carers when the need arises.

Maybe this should be the mantra for a new person-centred approach in caring for people with learning disabilities and autism, with a strong connection to a post-human/dis-human perspective that embraces disabilities rather than sets them aside as people who are sub-humans or not human at all in the way that the people of Whorlton Hall, Winterbourne and other places were treated.

Disclosure statement

No potential conflict of interest was reported by the author.

Notes

1 Panorama is the BBC's flagship current affairs programme which aims to investigate and uncover stories often to scrutinise the use and abuse of power, both in the public and private domains.

2 ‘Dickensian’ implies that the poor social conditions which some people experience are reminiscent of the novels of Charles Dickens, which depict characters who suffer under Victorian conditions of poverty, exclusion and destitution, with limited powers to make changes.