Social Care

Baroness Campbell of Surbiton Excerpts

Thursday 29th November 2012 Lords Chamber

[Baroness Campbell of Surbiton]

My Lords, I, too, am very grateful to the noble Baroness, Lady Pitkeathley, for securing this debate. We have worked together for many, many years, and I am afraid that I am another usual suspect.

The integration of social care is a complex nut to crack. I am sure that Ministers with responsibility for health, both acute and primary, local government, housing, and work and pensions will also wish to pay attention to what is said here today. Together, they are responsible for the solution.

There is widespread agreement that care and support services are underfunded. The distinguished economist Andrew Dilnot, expertly advised by the noble Lord, Lord Warner, said as much in his report on how to fund the future of social care. There is not enough money in the system and we all know it. It is not just that the growth in demand for support has not been matched by a growth in resources; it is also clear that the needs and circumstances, and the aspirations, of disabled people, old and young, are increasingly complex. I am far from alone in your Lordships’ House in speaking from personal experience on these matters.

Budget restrictions are causing local authorities to make terrible decisions. Would any of your Lordships wish to tell a severely disabled lady that she cannot have help to go to the toilet at night and that she must wear incontinence pads even though she is not incontinent? Would you wish your names to be on a letter telling a frail, elderly couple that charges for their home care are to be increased by 30% when they cannot even pay their heating bill? These things are happening now and every day.

Yet, around the country some local authorities and their NHS partners are tackling these pressures with more constructiveness, co-operation and creativity than others. The Social Care Institute for Excellence, of which I had the privilege to be the founding chair, is looking at such examples through the eyes of service users. I applaud this approach. Service users are genuine experts by experience. For some local authorities the funding challenges have been a catalyst for new ways of working. They have encouraged the statutory authorities to work in partnership with people and their families; to listen to what they want to achieve and how they want to live their lives; and to work out the best way of supporting them to stay independent. Some councils are using a whole range of resources to come up with really innovative solutions tailored to individual circumstances. They have rediscovered the value of putting people—not services or resources—at the centre of decision-making. This is music to my ears. It reassures me that many in charge of care and support will not simply take the easy and destructive option of cutting services in a sheep-like fashion.

I was deeply troubled when I heard of a local authority, Worcestershire, announcing a blanket policy of cuts, including capping non-residential care costs to a level equivalent to the residential care rate. I knew that it would not be long before yet another authority followed suit, and I was right. At least three other local authorities are now proposing the same policy. There is nothing creative or collaborative about this approach. Such a policy has the potential to overturn three decades of building an independent living culture for those with the highest support needs. Surely we do not want to go back to the 1970s when disabled people and those with long-term medical conditions were invisible in society—patients or residents but not people, expected to live out their days in a hospital or nursing home, or trapped at home in the back bedroom. Denial of independent living is a breach of the UN Convention on the Rights of Persons with Disabilities.

I would like to remind your Lordships of the late Baroness Lane-Fox. She was a remarkable disabled Peer with a much larger electric wheelchair than mine. She championed the cause of patients living in iron lungs at Guy’s Hospital during the 1970s and early 1980s. She brokered an initiative between government, healthcare, social care and housing to get them living in the community. These victims of polio were under the care of Dr Geoffrey Spencer, a visionary physician who placed nothing in the “too difficult” tray. I do not know whether any of your Lordships have ever seen an iron lung. It is like a seven-foot cylindrical missile on wheels—a challenge for an integrated team in the 21st century, let alone one in 1981 when Felicity Lane-Fox joined the Conservative Benches and captured the imagination and support of this House and the other place, and got money where there was no money to pay for it. In those days, as I said earlier, there was no budget line. We were really, really strapped for cash. There were no complex-needs commissioning boards and no integrated housing or social service practice guidance, just a shared belief that these patients should enjoy the same human rights as the rest of society and should be prioritised. Government money for their care in hospital was creatively redirected and renamed as “health research”. Occupational therapists and clinicians worked with local authorities as one team. Together, they liberated these reluctant bed-blockers, who became known as “responauts”—a remarkable achievement.

Now fast-forward 30 years to 2011. The JCHR conducted an inquiry into disabled people’s right to independent living. We heard from witnesses about situations not so different from those of the hospital-bound responauts. It struck me how easy it has been over the past few years of austerity to slip back to a time when young and old people with significant support needs were second-class citizens, denied their human and civil rights. It is a travesty that lessons learnt from an emerging human rights approach to the funding and delivery of care and support in this country have been so easily cast aside in the name of austerity.

At the launch of the JCHR report, I found myself making pleas not dissimilar to those made by Baroness Lane-Fox 30 years ago—this time for a young Asian man with Duchenne muscular dystrophy, stuck in the same respiratory unit as the 1979 responauts. He was there for four months longer than was necessary, surrounded by critically ill patients, reminding him daily of his recent trauma. The reason was not financial. The cost to the state was more than £900 per day, as opposed to a maximum of £400 in the community. No, the reason was that the local authority social care services had no budget compared to their health services partner. The result was the usual “who pays?” war, preventing a joined-up approach. This caused the inability of both to put the young man and his family at the centre of planning. His well established independent living arrangements were torn apart by the long unnecessary stay in hospital. He lost opportunities to work and further his career, and his overall well-being suffered inextricably. He paid a high personal cost and much-needed public money was wasted.

The JCHR made many recommendations in its Article 19 inquiry report last year—recommendations that will help the Government to regain their international reputation for delivering a human rights approach to care and support in this country. They challenge us all to understand, and action, the true meaning of mutually supportive systems, spending and consuming.

In conclusion—I know I am running out of time—I would be grateful if the Minister would tell your Lordships about the current status of the Government’s plans to address the conclusions and recommendations in the JCHR report. To date, it simply has not been good enough

Among the concerns of witnesses at that inquiry was, of course, the closure of the independent living fund. Will the Minister explain how the Government will ensure that money currently safeguarded through the mechanism of the Independent Living Fund will continue to be used only for modern independent living purposes? Will he again reconsider ring-fencing that money?

Please, do not let this be another debate where we share human rights stories. The UN Convention on the Rights of Persons with Disabilities embodies 21st-century ideals of what public support services should be striving towards. Rather than allow the backward slide to accelerate, let us begin by taking Dilnot off the shelf and working together to fix social care.