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In the second of two blogs, Dr Julie Higgins, NHS England’s Director of Transformation – Learning Disabilities and Senior Responsible Officer (SRO) for the Transforming Care programme, reviews the last year of work to reduce inequalities by improving physical health and wellbeing.
A vital part of living well in the community is good access to primary care (your GP), and that’s been a huge focus as well for us over the last year. Anyone with a learning disability over the age of 14 can have a learning disabilities health check although most don’t, so we’ve been working on lots of initiatives to put that right, as well as to encourage the use of Summary Care Records (SCR) so that wherever someone is in the health system, their support needs will be flagged.
We’ve worked with Mencap on the fantastic ‘Don’t Miss Out’ campaign to make GPs and their patients with a learning disability more aware and more likely to make health checks happen. We’ve worked with the RCGP to publish a great set of resources to help doctors do the health check.
In the meantime we continue to collaborate with NHS Digital to get more information about people with a learning disability on their GP register, to tell us where we need to reduce health inequalities and get better at preventing and treating conditions such as diabetes and epilepsy which people with a learning disability are more likely to get; and providing screening for some types of cancer, which people with a learning disability are less likely to get checked for.
So we know where there are health inequalities: and alongside all this work to reduce inequalities, we are also continuing to lead the world’s first national review into the deaths of people with a learning disability (LeDeR), to learn from what’s working well and where further improvements could be made. People with a learning disability are often in touch with a range of different agencies that each hold a piece of the jigsaw when understanding a person’s death, and the involvement of families and listening to their view is crucial when looking at this. Earlier this year LeDeR was endorsed by the national ‘Learning From Deaths’ Programme as a model for Trusts to follow in conducting local reviews.
Each day 30-35,000 people with a learning disability take a prescribed psychotropic drug when they don’t have a mental health problem. To tackle this we have built a cross-system coalition, including all the royal colleagues, people with a learning disability and their families and carers to stop the over medication of people with a learning disability (STOMP) and challenge poor practice across the country.
Our social care partners have recently backed the STOMP pledge too, with 90 organisations having signed up. Collectively they support in excess of 34,000 people with a learning disability, autism or both.
We have been overwhelmed with support from partners for STOMP: at a recent event in Westminster hosted by the Rt Hon Norman Lamb MP we helped to launch new resources designed to embed the campaign into practice. In July, theatre company MixiT will be showcasing a new performance which illustrates why STOMP is such a crucial component of people having the right and opportunities to achieve their potential.
We have worked with 13 organisations to improve the quality of health services and co-design and implement Always Events® and develop two further NHS Quality Checking toolkits, giving seven in total, allowing people with a learning disability to assess the quality of services they use.
We established a children and young people sub group focussing on early intervention and treatment pathways, with an independent chair – Jane Ramsey. We also welcomed Christine Lenehan’s review of children and young people which reminds us of the energy and commitment that’s needed to go as far as we can to give children and people the best possible chance to thrive.
So whilst we know that lives are shorter, that it’s more challenging to make sure people get the screening and diagnoses to keep them well, or trigger support, we also know this isn’t inevitable, we can learn from good practice and close the gaps.
We need to improve – and we are – how we care for people with a learning disability. As I’ve described here there is lots of work happening to do this, and it’s our shared responsibility to make sure that people get the best treatment and the best experience we can provide. So I urge you to ask yourself what makes good healthcare and what makes a good life – and how we can be sure that everyone gets an equal chance to have both.