Health Inequality: Autism and Learning Disabilities

Baroness Scott of Needham Market Excerpts

Thursday 10th May 2018 Grand Committee

[Baroness Scott of Needham Market (LD)]

I too thank the noble Lord, Lord Touhig, for tabling today’s debate and pay tribute to him and other noble Lords around this House who champion the cause of people with learning disabilities and learning difficulties and those on the autistic spectrum. As we have heard, that group includes some of the most vulnerable people in our society, for whom our advocacy and that of others is essential in ensuring their basic safety, that their needs are met and that their quality of life is the very best it can be.

I wish to focus my brief remarks on this question of advocacy, and to do so from the perspective not of someone with clinical or personal experience, but as the patron of a Suffolk charity, Ace Anglia, which does wonderful work in this field. In this world of care pathways, detailed measurements and performance indicators, there is a danger of creating care by algorithm, which loses sight of the individual. I heard from a specialist nurse about the difficulties of defining learning difficulty and learning disability. The result of that nuance is that you can end up with your name not on the learning disability register, so you do not get called for a health check, and then the danger of undiagnosed health conditions can increase.

A learning disability adviser to the NHS told me that, as someone with a mild learning disability himself, he was convinced of the need for more people like him in paid NHS roles because, “They know how things should be like”. That is why it is crucial to have high-quality local advocates, such as Ace Anglia, which work with individuals on a one-to-one basis to improve their lives then, crucially, turn that experience into valuable learning, which can then be used to help others. I have been told by a number of people in health and social care in Suffolk that the work of Ace has been a real catalyst for cultural change and has created what they have described as “real-world understanding”.

Ace holds regular get-togethers around the county for its users, which are used to share experiences of services such as the NHS or public transport. It provides good qualitative evidence to local service providers. The organisation has become expert in facilitating that sort of event so that users can feel genuinely empowered in what can be a hostile system. Ace has been commissioned by its local clinical commissioning group to produce 20 easy-read resources to support people with learning disabilities in navigating their way through primary care services. These will give people more knowledge and control over their health and allow for better communications. So much depends on having a local group as effective as Ace and on the personal relationships that they can build with the key people locally in the NHS, or social services. Could the Minister reflect on how these local support networks can be helped to thrive right around the country?