An easy read advance care planning booklet has been launched in pilot across Northamptonshire. This new NHCP project, funded by Health Education England, gives people with a learning disability the opportunity to think about, talk about and write down their wishes, preferences and priorities for care at the end of their lives.

Planning in advance can help guide others to make the best decisions about a person’s care, once that person can no longer speak or decide for themselves and ensure they are acting in their best interests. The rationale of the project is to improve the outcomes of people with learning disabilities at the end of their lives to allow them to die with dignity and choice.

When funding for the project was awarded in 2019, about 50% of people died in their own home or place of choice other than hospital. At the time in Northamptonshire, 74% of people with learning disabilities died in hospital – a figure above the national average – and work is under way locally to improve this.

The project team included palliative (end of life) and learning disability professionals from across NHCP organisations, with quality assurance provided by people with learning disabilities and Compassion in Dying, who described the easy read plan as “an exemplary piece of work”. Training has been cascaded to champions across health, social care and service providers to enable more people with learning disabilities to state their preferences for care and their end of life. It is hoped the resource will also prove useful to others who would benefit from easy read materials, such as those with dementia or for whom English is a second language.

For more information about the standard and easy read advance care plan, click here or contact 0800 917 8504 or for hard copies. The NHCP learning disability team are bidding to improve resourcing and quality for a fuller roll-out of the plan across the county.