BILD are part of the Valuing People Alliance which exists to champion the rights and wellbeing of people with learning disabilities. Find out more about the Valuing People Alliance here.
With the release of the LeDeR report today we share frustration that care hasn’t improved despite annual guidance and recommendations, and this isn’t good enough.
Whilst we welcome that meeting the health needs of people with learning disabilities are a priority in the NHS Long-Term Plan, and whilst we support the Department for Health and Social Care’s commitment to mandatory training in learning disabilities, the report shows that we simply aren’t improving fast enough.
Furthermore, we recognise that dementia and cancer are key issues and therefore encourage effective planning to be included in the Long-Term Plan for where people with learning disabilities are affected by these.
However, the Long-Term Plan and educating health staff alone does not address the entire picture. A wider response is needed across social care, public health and prevention, and a more integrated system that better meets the needs of people with learning disabilities.
It is shocking that the report notes: “15 people with learning disabilities had their underlying cause of death erroneously coded as ‘developmental disorder of scholastic skills, unspecified’– a commonly used code for learning disabilities”. This is unacceptable and highlights underlying health inequalities in the system.
We know that health inequalities are complex, and there is a need to address the root causes. We want to see:
- a cross-sector government response and a stronger focus on the positive policies and interventions suggested in the Marmot report, which address the social determinants of health, such as poverty, poor housing, discrimination and bullying. If we want to see change, it will require everyone in the system to be involved in improvements, not only health.
- stronger accountability to people with learning disabilities and their families, including them in the conversation and listening to them. This needs to take place at both the individual level where each person is concerned, and at a systems level, such as in training staff and informing policy direction. The Valuing People’s Alliance is one vehicle by which system partners can hear from those people about what is important, but we urge for this to happen more widely if we want to see real and lasting change.
We must ensure that things change quickly for the people and families affected. Not only should these actions result in practical changes but should support the cultural change needed to help wider society understand and reduce present inequalities.
The report recognises that care goes beyond projects and programmes. Compassion, understanding & leadership are key aspects of care that every health professional & service should display. We will support all efforts of those displaying these human-centred aspects of care and support people with learning disabilities and families to be heard when they experience health care displaying a lack of compassion, understanding and leadership.
What else are we doing?
- We are taking responsibility to make sure actions and associated work is incorporated into our work as the Valuing People Alliance. Through our collective and separate work and through our wider partnerships we commit to supporting and sharing actions to ensure change happens.
- We have developed an ageing well & growing older with learning disabilities National steering group to tackle many of the issues highlighted.
- We also look forward to working with colleagues across the sector in the Health and Wellbeing Alliance and including NHS England to address the shocking health inequalities experienced by people with learning disabilities.
21 May, 2019