People with Learning Disabilities

Baroness Jolly Excerpts

Thursday 6th June 2019 Lords Chamber

[Baroness Jolly (LD)]

My Lords, I declare my interest as the chair of the board of trustees for Hft, Home Farm Trust, a national charity that supports adults with learning disabilities. We support more than 2,500 adults in community settings across England. I was fascinated to listen to the noble Baroness, Lady Lane-Fox. We actually use modern technology: if one household wants to talk to another, they just touch the television in the corner, it all pops up and they have a chat, which brings them much closer. I would also like to talk to her outside the Chamber about research that might be going on.

My interest in learning disabilities goes back to 1997, when I was a non-exec director on the board of an NHS trust delivering services to adults with a learning disability, as well as other services including community services and mental health services. Non-execs were expected to visit settings where services were delivered, and I sincerely hope that that is the case right across the NHS now. On our way back from a meeting, a non-exec colleague and I decided to visit one of our hospital settings unannounced. What we found was not quality care: no one paid any attention to the environment, patients were strapped in chairs and the place did not feel right. People who go into hospitals will know whether one feels good or does not—it is in your water, if you like. There was a feeling of containment, not of care. We went straight back to the chief executive and played merry hell. That was more than 20 years ago, and things should have moved on.

I thank the noble Baroness, Lady Thornton, for tabling this debate, but we should not be having a debate at all. Budock in 2005, Winterbourne View in 2011, Calderstones in 2016 and now Whorlton Hall in 2019 each showed us scandalous and shameful treatment of adults with a learning disability living in a setting run by, or for, the NHS. Reports were written and inspection and improvement teams sent in, so what can the Minister say to the House by way of reassurance that in three, four or five years we will not see a repetition of these scandals? Can she tell us who has to put their foot down and where to enable the report Building the Right Support, which was written in 2015, to be implemented?

That report is where we can find the national service model. Services in the community have to be set up, and local authorities have to commission services. We have spoken about local authorities and commissioning. Sometimes local authority commissioning is unimaginative; sometimes it is just a case of an uplift, or of saying that it will take five hours a week to care for Mary Lou, John or James, without putting the individual at the centre of the care plan.

The LGA, ADASS and NHS England co-authored Building the Right Support. They said that before the end of 2018,

“we will take stock and look at going further”.

Can the Minister confirm that, six months on from that date, stock has indeed been taken and what “going further” means? Where have alternatives not been found, and by when will this be achieved?

Let us be clear about the scale of the issue. In April 2019, data from NHS Digital shows the continuing human rights scandal facing some of the most vulnerable in our society. At the end of March, there were 2,260 children and adults with a learning disability still being detained in in-patient units. That is 437 more than the minimum target set by the Government in October 2015 to move between 35% and 50% of people with a learning disability and/or autism out of institutions and into community-based support by the end of March 2019. The number of children has more than doubled to 240, and the biggest group of children—61%—is of girls with autism and no learning disability. I remind noble Lords that these children are detained. In one month, there were 2,605 uses of restrictive interventions—physical restraint—875 of which were against children. The average time in in-patient units, away from home, for people with a learning disability and/or autism is more than five years. Finally, 16% of people in an ATU have been there for more than 10 years.

As of a couple of weeks ago, another working group has been set up for learning disabilities and autism to fund specialist advocates to review the care of patients in segregation or long-term seclusion. That is welcome. The Secretary of State has promised to work with families, join up services and work to move people to the community where appropriate. That is welcome. But there are two areas still to be addressed: the first is money and the second is workforce. It costs quite a lot more to care for someone in the community, but that is the price society should pay for ensuring someone lives the most fulfilling life possible, with dignity. This care funding comes from local authorities, which, as I said earlier, are not all the most imaginative commissioners. They should be commissioning a care package according to what is in an individual’s care plan, but not all are. The Chancellor should acknowledge that and ensure that a realistic settlement is given to local authorities.

The failings in all the scandals I outlined earlier were human. Care workers and nurses were either ignoring any training they had received about care and compassion or were poorly trained, and certainly poorly managed and supervised. Supervisors and management either turned a blind eye, or were complicit. However, not all is doom and gloom. There are many outstanding and good learning disability services in communities. It is time we thought of care as a profession, and one that has robust registration, as in Wales, in which carers are valued and paid a reasonable wage, and in which there might even be some sort of professional progression. This will come at a cost. I hardly need to remind the Minister that we still want clarity, despite no Green Paper. Then, and only then, can we start to lay a foundation for quality care for some of the most vulnerable in our society.