Change that leads to better lives

Small steps on a long journey to health equality – NHS 111 and LeDeR

NHS 111 report new website image v2

NHS 111 First

When the NHS 111 first campaign launched, we at the Valuing People Alliance (NDTi, LDE and BILD) decided we wanted to know what impact this might have on people with learning disabilities. In March 2021 we launched a simple survey to gather some learning about how it is working for those who have a learning disability, for those who are autistic, for families or friends using the service and on behalf of people who may not use words or usual terms to express their experiences.

We are heartened to learn that many people have had positive experiences, with call handlers acting sensitively, and making adjustments to respond to individual differences. But some people are still struggling to make use of the system and have made some suggestions about how to improve this, including more people with learning disabilities training those who answer calls. It is useful to learn that those who were familiar with how it works, and could prepare what they wanted to say before their call, had better experiences.

Our findings can be downloaded here.

Adam Butcher, member of the Oliver McGowan Mandatory Training evaluation advisory group, and long-time member of PHE and NDTi advisory group says:


During this week, whilst we reflect on what’s positive, we cannot ignore what still needs to change. The LeDeR report reminds us all, each year, of the terrible and unforgivable health inequalities faced by people with learning disabilities. This feels especially pertinent this year as many of us reach the end of a year of COVID-19 feeling lucky to have come out the other side. It is thanks to the resilience of many people who have sadly lost family and friends who continue to campaign for change that reminds us daily this is an issue we must continually address - making personal, cultural and systems changes to reduce the inequalities that exist.

Whilst the LeDeR report this year noted the improvement of life expectancy rising by 1 year and this is a small positive, there is still a quarter of century to be made up in years to be lived by people with learning disabilities! Every factor which can help must be addressed. Ensuring good training for everyone working in health and social care will be one part of the picture, following the trials and evaluation of the Oliver McGowan Mandatory Training in Learning Disability and Autism. We were also pleased to note that, for those who have had Annual Health Checks in the last year, mortality is reduced. Clearly it works, and everyone needs this opportunity, from age 14 upwards. For people with learning disabilities, professionals or families who want to learn more we have collated good practice from around the country to help here.

Finally, we welcome the continuation of the LeDeR process. It would be strengthened if reporting deaths were mandatory as that will help identify some of the potential inconsistencies and lack of clarity we see from data, particularly for groups of people for whom reporting is low. And yet we know, however it continues, it is only through this year on year, and long term reflecting that we will really understand the impact of changes.

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