Disability: Premature Deaths

Lord Adebowale Excerpts

Monday 17th October 2016 Lords Chamber

[Lord Adebowale (CB)]

I thank the noble Baroness, Lady Hollins, for introducing the debate and I pay tribute to the inspirational late Lord Rix. I will share some observations on the healthcare experience of the people we support at Turning Point. I declare my interest as chief executive of that learning disabilities service provider, which for over 25 years has supported over 450 people with learning disabilities across England. Our experience is that the healthcare and well-being experience of the people we support varies greatly around the country. The following are anecdotal but representative examples from our services, which show that while some progress has been made, more still needs to be done—a kind of reality check, I guess.

The people we support with a learning disability rarely see a learning disability nurse during a hospital visit. We find that we still have to question “do not attempt resuscitation” orders for some people we support. The people we support find that community healthcare provision varies greatly across the country and that there are gaps in specialist support for more complex and behavioural needs. The people we support struggle to gain reasonable adjustments, such as fixed-time GP or clinical appointments, which are particularly important for anxious people with autism or behavioural challenges. With regard to integrated health and social care, the people we support find their well-being needs filtered by assessors using expressions such as “health wants” and “health needs” in their assessments and reviews. At the end of their life, the people we support experience delays in being assessed for additional support as their palliative needs change.

We were very pleased to join Warwickshire County Council in launching a well-being service for people with learning disabilities that will give information and advice around health and well-being and help to improve access to health and well-being services. But, to our knowledge, a provision like this is fairly unique.

We are also noticing the impact of funding cuts for social care. These have been compounded by increased costs of delivery due to the national living wage, although we support that. Commissioners continue to be forced to retrench budgets almost annually and, as a result, face difficult decisions about services for those whom we are here to support. While the funding debate continues, people requiring support continue to be those who bear the brunt. In modern-day Britain, the increasing reality for many people with a disability is that they will be provided for to be deemed safe, fed and hydrated—that is deemed enough in many areas.

People with learning disabilities must receive the same standards of care as everyone else, and they must also receive the same level of determination from the Government to lead the improvements that are needed. The recent experiences of the people we support show that change needs to happen faster to improve healthcare for people with learning disabilities everywhere. More funding for social care is needed to ensure that disability services are able to offer more than the bare minimum. I thank the House for allowing me to speak in the gap.