Care Services: Abuse of Learning Disabled

Baroness Hollins Excerpts

Thursday 13th December 2012 Lords Chamber

[Baroness Hollins]

My Lords, I thank my noble friend Lord Rix for his inspiration and tenacity on behalf of people with learning disabilities, and I congratulate the noble Baroness, Lady Kidron, on her eloquent maiden speech, which reflects her long-standing commitment to social justice.

I know quite a lot about learning disability. I know about it as a parent, a psychiatrist, a policy maker, and I also chair a charitable organisation that creates communication resources about life and relationships for people with learning disabilities. First, I commend the Government on their report, for the programme of action signed up to by 50 organisations, and for setting out what good care should look like. I also commend the serious case review conducted in such a painstaking way by my former colleague Dr Margaret Flynn.

The BMA under my presidency recently commissioned an expert round table in your Lordships’ House at which Dr Flynn spoke. I shall draw on the notes from that meeting in what I say. There is a story to tell which begins with a question: why were these very vulnerable people at Winterbourne View at all? The existence of Winterbourne View and similar hospitals represents a commissioning failure. Hospitals such as Winterbourne View have been considered unsuitable for more than 20 years. Jim Mansell’s first report on challenging behaviour in 1993 criticised the widespread core practice of exporting people with behaviour that challenged. A drawn-out, long-stay hospital programme that originally began after institutional scandals in the 1970s and 1980s was completed only just three or four years ago.

Even before the closure programme had been completed, new mainly private hospitals were already touting for business. As a policy adviser in 2001 I drew attention to this trend, as did others, but there were no incentives in place to encourage local providers to develop adequate local support for people. With some notable exceptions the practice of exporting patients similar to those who ended up in Winterbourne View continued. The sad journey of most of these patients began long before they arrived in hospital. The serious case review showed that. There were many lost opportunities to provide better, more personal and local care, but they were missed. Why were they placed such a long way from home? Typically a crisis happens just before a weekend and risk-averse professionals seek an emergency hospital bed somewhere, anywhere.

Many of these adults have had sad lives; they may have been abused, bullied or have had a traumatic bereavement. Such dislocation to a distant hospital can further disturb and re-traumatise them. On entering hospital, vulnerable adults depend on the nurses to get to know them and to understand and meet their needs, and on the other members of the team to draw up an active treatment plan. We have heard a great deal about the lack of compassion in different types of hospitals, but Winterbourne View was the site of systematic abuse by poorly paid and untrained staff with the wrong attitudes. They were unable to understand the communicative function of their patients’ behaviour; they lacked the skills to support them in a respectful and safe manner.

I am pleased to see the roles envisaged for Health Education England, the professional senate on learning disability and Skills for Care to turn this around. However, I agree with the noble Baroness, Lady Jolly, and the noble Lord, Lord Addington, that these staff need to be better supported. Some will need therapeutic supervision to enable them to care better.

Distant placements make it difficult for families and carers to provide oversight and protection, and yet the best safeguards for people with severe learning disabilities are the people who know and love them. I am glad that the DH final report and the concordat recognise that services must be provided locally and that containment must give way to personal care and personal treatment plans. The ordinary life that campaigners such as David Towell have argued for for so many years seems to be within the reach of even those whose behaviour challenges. Does the Minister believe that the timescale proposed to get people back home is realistic? I hope so.

Choice—an OFT-heard mantra—is a key principle of the Health and Social Care Act, but what sort of care would service users choose if they were able to? This is the question that those who commission and provide services need to ask. I am encouraged that the report expects people with learning disabilities and family carers to be involved in future CQC inspections.

Too often those close to vulnerable adults—many of whom wish to help—are still excluded from decision making. Personal budgets and direct payments provide one mechanism for more personal care but for people with behavioural challenges pooled budgets are needed to avoid financial arguments about whose responsibility it is to provide effective and timely care and support. People were placed at Winterbourne View by the NHS largely, but the NHS looked to the local authority to take responsibility for funding their rehabilitation. Where was the incentive? They were out of sight and out of mind. Does the Minister think that the new plans will provide adequate incentives to get people home?

NHS-funded care, whether in hospitals or the community, should deliver high-quality assessment and treatment and it should be evidence based. Winterbourne View was a hospital; its patients had mental health needs. Most were detained under legislation but they received little in the way of specialist health care. It seems to me that people with severe learning disabilities are still seen as second class citizens and not afforded the same rights as other citizens. The 2001 White Paper, Valuing People, challenged those assumptions and raised the hopes of people with learning disabilities and their families, but access to the same health care as others is still denied to many. This is as true of mental health services as physical health services.

Underfunding, a lack of 24/7 working, the separation of specialist learning disability services from primary care and mental health services means that even those specialist services cannot support and deliver the safe and timely care that people need. For example, in the case of specialist psychological therapy services, IAPT services and highly specialist psychotherapy services have not been adapted for people with learning disabilities. This is especially important for people whose behaviour challenges. Can the Minister clarify the expectations of the Government with respect to the mental and physical healthcare of this group? Does parity of esteem apply to this patient group too? It is disappointing that there is so little in the report about the range of mental health treatments that people need.

My first boss in learning disability, Joan Bicknell, recruited me back in 1981 because I was a medical psychotherapist and a family carer. She lectured extensively about the emotional lives of people with learning disabilities. I remember how sceptical her audiences were. How could people with little spoken language have feelings? Is this the same attitude that makes it possible for so-called carers to abuse the people they are caring for? Some of my research studied the effect of abuse and bereavement on people’s behaviour and emotions. To help their carers understand their inner world, I turned that research into picture books about life experiences for them to read together. More research is needed to help us understand what happens in people’s homes and what leads to behaviour that challenges. Can the Minister tell us whether there will be substantial investment in research, similar to that being used at King’s College to develop a care home research network for people living with dementia?

Winterbourne View hospital failed to meet the needs of these adults. How can we be sure that this time we do not forget; that the lessons from this tragedy are truly learnt and safeguards are put in place?