People with Learning Disabilities: Health Inequalities

Baroness Tyler of Enfield Excerpts

Thursday 18th July 2013 Lords Chamber

[Baroness Tyler of Enfield]

My Lords, I add my congratulations to the noble Baroness, Lady Hollins, on initiating this critically important debate. As the title of the debate states—it bears repeating—we are today discussing the health inequalities of a particularly vulnerable group, highlighted by the confidential inquiry into the premature deaths of people with learning disabilities. I speak today not because of any specialist knowledge but because of my interest in health inequalities, of which this is such a stark example, and I am grateful to the National Development Team for Inclusion for its briefing.

I am sure we can all agree that many of the findings of the report were horrifying. I will not repeat the statistics that many other noble Lords have already given the House. Suffice it to say that nearly three times as many people with learning disabilities die avoidably than die among the general population. Like many noble Lords, I find this shocking. Surely the issue should be treated with the same seriousness and urgency as responses to the appalling events at both Winterbourne View and Mid Staffs. The latter led to the highly influential Francis report and the immediate implementation by government of some of its key recommendations.

I will first make a few points on the factors leading to this vulnerability and these premature deaths. The confidential inquiry found that a fifth of people with learning difficulties experience significant difficulty or delay in diagnosis of their illness and that, as a result, there is often too little proactive care for this group and too many crisis-driven responses. It found a lack of reasonable adjustments to help healthcare, particularly in basic things such as attendance at GP surgeries and clinics; that GP referrals often do not mention learning difficulties; and very limited hospital flagging systems. Additionally it found that poor record keeping is creating problems and that, in some instances, even “do not resuscitate” orders in patients’ records have been found to be inappropriately or poorly documented. As others have said, there was poor adherence to the Mental Capacity Act and, finally, the inquiry identified poor co-ordination of care across and between different disease pathways and service providers, which failed to understand the episodic nature of care provision. That is only a few.

We know a great deal about the problem and we cannot continue to allow one group of people, those with learning disabilities, to experience such drastic healthcare inequality. It is because I know that the Government have such a strong commitment to reducing health inequalities that today I ask the Minister to consider immediate action in the specific areas on which I will focus my contribution. I am encouraged to do so in the knowledge that the Care and Support Minister, my honourable friend Norman Lamb, recently said:

“It is not good enough that people with learning difficulties are at a greater risk of dying earlier due to poor health care. … We are making progress on improving standards of care but we have to go further and keep driving forward our plans”.

I could not agree more.

First, regarding the confidential inquiry’s concern about a lack of adherence both to the Mental Capacity Act and the Equality Act, outlined by other noble Lords today, will the Minister clarify the Government’s plans to address this concern? Secondly, while details about the deaths of people with learning disabilities identified by the inquiry illuminate the severity of the problem, they only provide a snapshot. As anyone who has taken at least a basic course in statistics knows, cross-sectional data—what the confidential inquiry has assembled—cannot tell us as much as longitudinal data.

The confidential inquiry recommended that the Government should create a mortality review body and has offered three different models for doing so in subsequent discussions with the department. This would provide a critical ongoing lens into the mortality of people with learning disabilities. Will the Minister explain the Government’s plans and timetable for creating such a body?

Thirdly, the confidential inquiry also describes the current healthcare situation as one largely driven by crisis, with a lack of evidence of sufficient forward planning. Will the Minister provide his reaction to this assessment and say how forward planning can be improved?

Finally, on the care of those with learning disabilities, the only support currently available to clinical commissioning groups and local authorities is provided through the Learning Disabilities Specialist Public Health Observatory, which is part of Public Health England. This work involves a specific work strand on promoting learning and on sharing that learning with the wider sector and local areas. It is very important that this work continues and, given the number of people with learning disabilities who are supported both through social care and who live with their families, that this work programme includes specific action to support social care, understands the action needed to reduce premature deaths and works alongside action targeted at family carers. Will the Minister say what support the Government intend to put in place to ensure that local areas are able to implement the recommendations of the inquiry?

I finish by suggesting some additional practical actions for the Government to consider to try to improve the current situation. First, they could identify those people with learning difficulties who are afraid of seeking medical assistance and provide them and their carers with support and training now, before the need for urgent medical treatment arises. Secondly, they could offer a named healthcare co-ordinator to all people with learning difficulties with two or more long-term conditions and to those who live unsupported or with minimal support in the community with one or more long-term conditions. This would be akin to the Government’s recent proposals to refresh the NHS mandate, including by providing a co-ordinating clinician for the non-hospital care of another very vulnerable population—the elderly. This is something I very much support.

Thirdly, the Government could require all health and care services to assess and document the reasonable adjustments that individuals with learning disabilities need to access healthcare equitably and to share this information with providers so that people with learning disabilities are properly identified and providers have the duty to ensure that these reasonable adjustments are made. It must be possible to co-locate community learning disability nurses into GP practices to work alongside GPs.

Finally, will the Government consider requiring all acute hospitals to have at least one learning disability liaison nurse in post? These are just practical and specific examples—we have already heard others today and I am sure that we will hear more. I look forward to hearing the Minister’s response to these and other points.