People with Learning Disabilities: Health Inequalities

Baroness Jolly Excerpts

Thursday 18th July 2013 Lords Chamber

[Baroness Jolly]

My Lords, I, too, thank the noble Baroness, Lady Hollins, for bringing to the attention of the House the report that gives us the opportunity to discuss this issue. The report makes for sobering reading. Many noble Lords speaking in this debate have far more expertise in these matters than I have—in fact, looking around the Benches, I think that they all have—but the first NHS trust board that I sat on more than 15 years ago was a community trust with learning disability, mental health and community health responsibility for all of Cornwall, so I come at this with at least some understanding. I commend the work in this area by both the noble Baroness who, during her tenure as president of the BMA, sought to raise the profile of learning disability, and the noble Lord, Lord Rix, a long-time advocate of those with learning disability, and president of Mencap, which I thank for producing an excellent briefing.

In the past, there have been plenty of situations and reports, and we have heard about some of them today, that should have given successive Governments a wake-up call regarding poor provision for people with a learning disability—Budock Hospital and Winterbourne View, to name two, both of which point to the inevitable health inequalities. For many years now we have known that the health commissioning of learning disability services has been poor. Many PCTs wrote a cheque to providers and effectively asked them to get on with it. Indeed, there is a historic similarity with mental health service commissioning. Mental health now has parity of esteem status with physical health, but it does not feel as if the same can be said for learning disabled people.

The history of a lack of communication between health and social care in this area is well known, too. It was as if, after the move to take people out of large establishments and put them into domestic settings, commissioners and providers decided that the job was done, the spotlight went off, attention moved elsewhere and quality was forgotten. I must acknowledge that there are some splendid services, but that standard is not yet universal.

So what are good services? Here I have to thank Professor Jim Mansell of the University of Kent for the list from his 2010 report, Raising Our Sights. Good services should be individualised and person-centred, treat the family and carers as expert, focus on staff relations with the individual, sustain the package of care and be cost-effective. In addition, they should be supportive, use appropriate advocacy and be predictive and well implemented. I do not wish to belittle the work of the professor but none of this list should come as a surprise to the House. The surprise and shame is that this list is not part of universal practice.

That brings us to the Confidential Inquiry into Premature Deaths of People with Learning Disabilities. The report was commissioned by my right honourable friend Paul Burstow following the events at Winterbourne View. It is thorough and contains a detailed and practical set of recommendations. In the time that we have, I am unable to cover all aspects of the report so shall focus on information, staffing and the Mental Capacity Act. The report puts the spotlight back on mortality. As we have already heard, it is particularly appropriate that we are discussing the mortality of people with a learning disability in the week when the Keogh report did just that for the total population served by 14 hospitals. Sir Bruce was able to do that because he had the data. This report is based on a dataset that is not normally collected for people with a learning disability.

The report’s first recommendation is that people with learning disability should be clearly identified on the central NHS registration system and in all healthcare systems. Although outside the scope of the report, this information should be recorded on social care records too. A learning disability flag should be part of a standardised dataset and I would hope that a combined, patient-held record would be a reality in the not too distant future. Not only does this make identification easier, it would aid audit and research, make joint strategic needs assessments far more accurate and easier to produce and make reasonable adjustments easier to flag, thus improving commissioning and contracting. This is not an unreasonable request, it is an issue of equality, and without it people with learning disability cannot be treated equally. I would like the Government to commit to a clear timeline for this work, so would the Minister tell us what that is, or when we might know what it is?

Moving to staffing, the report calls for a named health worker to be allocated to those with complex or multiple health needs, and I welcome the Government’s response and further suggestion of a named worker in acute settings. There is also a need for specialist learning disability liaison staff in community settings. Can the Minister give an indication of when it is intended to roll this out?

These changes bring a need for training. Will the Minister reassure the House that Health Education England can put training programmes for health workers in place, and when they might become available in local training settings? Would he also confirm that training will be mandatory and included in continuous professional development for all health workers?

Finally, I turn to the Mental Capacity Act, which the noble Baroness, Lady Browning, has covered well. As she has said, it is currently under scrutiny in your Lordships’ House and is pivotal to people with a learning disability, as it is to any vulnerable group. Advice under this Act should be available at all times and easily accessible. That will pose challenges in delivery, and I ask the Government not to forget or ignore patient involvement and engagement in this. Members of the sector are very good advocates, but there is a real need for people with learning disability to be consulted and involved in improving access to the Act.

In conclusion, I have outlined the issues around records, data and information, the Mental Capacity Act and staffing. Would the Minister ask his colleague, my honourable friend Norman Lamb, the Minister for Care and Support, to come to the House in the autumn with NHS England’s new lead for learning disability to share with members of the House its thinking on these issues and the action plan that has arisen from this report?

I think that it was Gandhi who said that society could be judged by how it treated its most vulnerable. Reducing health inequalities should be central to that. It is not an issue which will attract the attention of voters; it is something that we do solely because it is the right thing to do. I would hate it if, 10 years on, we were seen to be wanting.