I’ve just been listening again to the hearing of the Joint Parliamentary Human Rights Committee, where two members of the Care Quality Commission (CQC) are grilled about their lamentable (to put it charitably) ‘inspection’ practices in relation to Whorlton Hall and St Andrews. One of the repeated refrains of the CQC people (apart from blaming everyone else) is that their inspection methods perhaps aren’t very good at identifying abusive behaviour in inpatient services, due to pesky staff ‘colluding’ in trying to hide their abusive practices (my interpretation and gloss of their words…) and even more pesky inpatients ‘inconsistently’ sometimes reporting abusive practices and their fear of speaking out while at other times reporting to inspectors that they were being treating with dignity. Meanwhile, both people who have spent time as inpatients and family members of people who have been or currently are inpatients say time and time again that when they raise allegations of abuse to the CQC there are ignored or given the brush-off.
I am beyond words in expressing how I feel about this session and the (in)action of the CQC. In this blogpost I just want to very briefly describe some relevant knowledge about service cultures in services for people with learning disabilities that I’ve come across, particularly relating to inpatient services. Then I will take a look at the extent to which I think CQC inspection arrangements are geared up to find abusive service cultures in inpatient units. Some of this is taken from a quick piece of work I did for NHS Improvement a couple of years ago, but the interpretation is all mine…
Firstly there has been a whole programme of research by Christine Bigby, Julie Beadle-Brown and colleagues looking at positive and negative cultures in housing services for people with learning disabilities. For a positive culture there are four overarching dimensions of culture when people living in a house are being supported well: the culture in the house is cohesive, respective, enabling and motivating.
Christine Bigby, Julie Beadle-Brown and colleagues, from careful work spending a lot of time in people’s homes, have drawn out 5 things that distinguish a positive place from a negative place: 1) that staff supporting people actually show the same values that are espoused by senior managers and service brochures; 2) that staff recognise their common humanity with the people they support, and everyone gets on with each other, rather than people being seen as ‘not like us’; 3) that staff recognise that they are there to support the person to live the life they want to live, rather than doing things ‘for’ people; 4) that the people being supported come first, rather than being supported in ways that suit the staff; 5) that staff are open to new people and new ideas, rather than resistant.
This way of describing positive and negative cultures makes a lot of sense to me. What the eagle-eyed among you will have noticed though, is that they don’t describe aspects of cultures that are more actively toxic and abusive. Peter Oakes, Dave Marsland and Caroline White have been working for some years now on identifying and monitoring indicators of the potential abuse of people with learning disabilities in a range of places.
These authors have identified six clusters of early indicators in identifying service cultures and environments in which people with learning disabilities may be at risk of abuse. Three of these clusters are not about service cultures as such, but they are extremely important as things to look out for:
1) The behaviours of people with learning disabilities (changes in people’s behaviour and needs; consistency of people’s behaviour according to the member of staff they are with or the place they are in; people harming themselves or bullying others, showing fear, or engaging in sexualised behaviours)
2) Service design, placement planning and commissioning (agreed care not being provided; lack of available options for people in the service; service design and placement planning)
3) Fundamental care and the quality of the environment (poor support for people with health problems; service dirty and in poor state of repair; people not supported with personal hygiene).
Three clusters identifying early indicators of potential abuse are about service cultures – they can be thought of as extremes of the negative cultures I’ve mentioned above, but that we need to be specifically vigilant about.
1) The decisions, attitudes and actions of managers at all levels within residential services which may place residents at risk, consisting of 2 clusters (management of the home and the organisation; staff recruitment, deployment and shift patterns). More practical details about what you might look out for are in the table below
2) The behaviours and attitudes of staff that may place residents at risk, consisting of 7 clusters (staff knowledge, skills and actions; staff values and attitudes; staff lack of choice, misuse of power, how the service runs; staff boundaries and inappropriate relationships; staff inconsistency and lack of reliability; staff getting important ideas wrong; staff attitudes and responses to abuse). More practical details about what you might look for are in the two tables below (there’s a lot to look out for here!)
3) Isolation, consisting of 2 clusters (isolation of individuals; defensiveness and lack of openness). Again, more practical details about what you might look for are in the table below.
There is a lot of detail in these tables (in very tiny writing), but I think it’s important to include them because it shows practically how it can be done, and the team producing these indicators have worked with services to spot these cultures early on and do something about them.
These are also the kinds of things that people with learning disabilities in inpatient units and family members are rightly sensitive to and pick up on really quickly. Looking at a few reports from the ever excellent Bringing Us Together and from the National Development Team for Inclusion, people and families time and again discussed toxic, abusive inpatient service cultures where they were spotting exactly the same indicators I’ve just outlined above – the tables below show some of the things people and families said.
1) Looking out for indicators of abusive service cultures is more/different than looking out for not very positive service cultures.
2) People have been working for a long time on practical ways to spot abusive service cultures, and the experiences of people and families show that they are really good at spotting when something might be seriously wrong.
CQC inspections, though, aren’t set up to proactively examine and find abusive service cultures in inpatient or other places where people with learning disabilities are living (I know I’m referring exclusively to people with learning disabilities rather than also talking about autistic people in this blog, because the stuff I’m talking about has focused on people with learning disabilities, but there is no reason why this doesn’t apply to autistic people in these places too). How?
First, they like paperwork and ‘evidence’. The way that people (including people with learning disabilities, families, and I suspect many visiting professionals) pick up these cultures can often be dismissed by regimes like the CQC as ‘soft’, based on intuition, and not within the realm of ‘proper’ evidence. Many people who try and alert the CQC report this sense of what they have to say being dismissed. Well – what all these people experience is real and is tapping into something vital that the CQC have admitted they are missing.
Second, in principle they wait until things are so bad they are unignorable, rather than seeking to proactively spot abusive cultures early and nip them in the bud.
Third, in inspections of specialist mental health services (including specialist inpatient services for people with learning disabilities and/or autism), the CQC inspects services using their standard framework (Care Quality Commission, 2015a, 2015b). The inspection process is designed to ask five fundamental questions. In Appendix B to the provider handbook (Care Quality Commission, 2015b) each of the five questions is broken down into between three and seven Key Lines of Enquiry (KLOEs), with associated prompts for each one. The five fundamental questions are as follows. Are services:
1) Safe? By safe, we mean that people are protected from abuse and avoidable harm (5 KLOEs).
2) Effective? By effective, we mean that people’s care, treatment and support achieves good outcomes, promotes a good quality of life and is based on the best available evidence (7 KLOEs).
3) Caring? By caring, we mean that staff involve and treat people with compassion, kindness, dignity and respect (3 KLOEs).
4) Responsive? By responsive, we mean that services are organised so that they meet people’s needs (4 KLOEs).
5) Well-led? By well-led, we mean that the leadership, management and governance of the organisation assures the delivery of high-quality person-centred care, supports learning and innovation, and promotes an open and fair culture (5 KLOEs).
Although the Safe? Question should be proactively looking out for early indicators of abusive cultures, the Key Lines of Enquiry questions are much more focused on looking for positive and negative service cultures, rather than taking seriously how to find an abusive service culture. Care and Treatment Reviews in some ways are similar, with the added proviso that their marginal status means that they are even less likely to uncover and be able to do something about abusive service cultures.
No big conclusion really, except to say that for the CQC to express surprise at their inspection regimes not being able to find abuse in inpatient service cultures is patent nonsense. Given the serial nature of abusive practices being exposed (largely by the media) in inpatient units for people with learning disabilities and autistic people, a responsible regulator should have put its house in order well before now. All the stuff I’ve mentioned here is readily available to an organisation like the CQC, and people would have bent over backwards to help. My rating:
· Safe: Inadequate
· Effective: Inadequate
· Caring: Inadequate
· Responsive: Inadequate
· Well-led: Inadequate
For those of you interested, here's a list of references of stuff I've referred to in this blog.
Beadle-Brown J, Bigby C, Bould E. Observing practice leadership in intellectual and developmental disability services. Journal of Intellectual Disability Research 2015; 59, 1081-1093.
Bigby C, Beadle-Brown J. Culture in better performing group homes for people with intellectual disability at severe levels. Intellectual & Developmental Disabilities 2016; 54, 316-331.
Bigby C, Beadle-Brown J. Improving quality of life outcomes in supported accommodation for people with intellectual disability: what makes a difference? Journal of Applied Research in Intellectual Disabilities 2018; 31, e182-e200.
Bigby C, Knox M, Beadle-Brown J, Clement T, Mansell J. Uncovering dimensions of culture in underperforming group homes for people with severe intellectual disability. Intellectual & Developmental Disabilities 2012; 50, 452-467.
Bigby C, Knox M, Beadle-Brown J, Clement T. ‘We just call them people’: positive regard as a dimension of culture in group homes for people with severe intellectual disability. Journal of Applied Research in Intellectual Disabilities 2015; 28, 283-295.
Bringing Us Together. Stronger Together – Family Event. 2016a. Bringing Us Together.
Bringing Us Together. Stronger Together – Families talk about their experience of independent hospitals. 2016b. Bringing Us Together.
Care Quality Commission (2015a). How CQC regulates specialist mental health services. Provider handbook. London: Care Quality Commission.
Care Quality Commission (2015b). How CQC regulates specialist mental health services. Appendices to the provider handbook. London: Care Quality Commission.
Clare ICH, Madden EM, Holland AJ, Farrington CJT, Whitson S, Broughton S, Lillywhite A, Jones E, Wade KA, Redley M, Wagner AP. ‘What vision?’: experiences of team members in a community services for adults with intellectual disabilities. Journal of Intellectual Disability Research 2016; early online.
Gillett E, Stenfert Kroese B. Investigating organizational culture: a comparison of a ‘high’ – and a ‘low’ – performing residential unit for people with intellectual disabilities. Journal of Applied Research in Intellectual Disabilities 2003; 16, 279-284.
Hatton C, Rivers M, Mason H, Mason L, Emerson E, Kiernan C, Reeves D, Alborz A. Organizational culture and staff outcomes in services for people with intellectual disabilities. Journal of Intellectual Disability Research 1999; 43, 206-218.
Hogg J. Protecting adults with intellectual disabilities from harm and abuse: international perspectives. Journal of Policy & Practice in Intellectual Disabilities 2013; 10, 187.
Humphreys L, Bigby C, Iacono T, Bould E, Humphreys L. Development of a scale to measure organisational culture in group homes. Journal of Intellectual Disability Research 2016; 60, 685.
Marsland D, Oakes P, White C. Abuse in care? The identification of early indicators of the abuse of people with learning disabilities in residential settings. The Journal of Adult Protection 2007; 9, 6-20.
Marsland D, Oakes P, White C. Early indicators of concern in residential support services for people with learning disabilities: The Abuse in Care? Project. 2012. Hull: University of Hull Centre for Applied Research and Evaluation.
Marsland D, Oakes P, Bright N. It can still happen here: systemic risk factors that may contribute to the continued abuse of people with intellectual disabilities. Tizard Learning Disability Review 2015; 20, 134-146.
National Development Team for Inclusion. Informing the service model: A report about the experiences of people with learning disabilities and families. 2015. Bath: NDTi.
NHS England. Care and Treatment Reviews: Policy and guidance. 2017. Leeds: NHS England. https://www.england.nhs.uk/publication/care-and-treatment-reviews-policy-and-guidance/ [accessed 26 June 2017].
Quilliam C, Bigby C, Douglas J. Paperwork in group homes for people with intellectual disability. Journal of Intellectual & Developmental Disabilities 2015; 40, 286-296.
White C, Holland E, Marsland D, Oakes P. The identification of environments and cultures that promote the abuse of people with intellectual disabilities: a review of the literature. Journal of Applied Research in Intellectual Disabilities 2003; 16, 1-9.