People with serious and persistent mental illness (SPMI) often have poor experiences of health care, including end-of -life care, yet their voices often go unheard, leading to decisions being made on their behalf. Nivedita Ashok describes research from UCL’s Marie Curie Palliative Care Department, which shows that people with SPMI want to make their own choice, just like anyone else.

People with a diagnosis of intellectual disability or a serious mental illness die much earlier from serious physical illnesses than the general population. Lack of support to have healthier lifestyles, only seeking help when very unwell, late presentation to services, delays in diagnosis, and insufficient treatment provision are all problems.

Despite this gap, they are often excluded from palliative care research, and their experience of healthcare services are often poor, e.g. failure to make reasonable adjustments.

Our research team has been studying these issues to identify the gaps and uncertainties in the evidence. The findings have helped us understand what service users, their families, and the professionals who work with them find challenging, and what they suggest can help improve this.

Dementia and end of life care is a challenging topic to engage young adults with but the EMBED-Care team took the opportunity to do this by putting together an event for Science Museum Lates to engage young adults with these themes. Sophie Crawley describes their experiences.

The Science Museum in London is a well-known destination for families and children to spend a day looking at all things science related. A lesser-known aspect of the museum’s work are Science Museum Lates. These are primarily targeted as a young adult social event for groups of friends to attend. There is a lively and engaging atmosphere with music, DJs and a bar, while they explore the Museum’s regular exhibits after hours and engage with events and activities run by external groups centred around a specific science-related theme.  

A conversation with the Science Museum about our work to improve the end-of-life care of people dying with or dying from dementia led to an offer to participate in a Lates event celebrating the 75^th Anniversary of the NHS. This was a great opportunity to share our research with a young adult audience who may not have thought about dementia or the end of life, but who will be increasingly affected by dementia as the prevalence, and the need to care for those with a diagnosis, increases. It also gave all the EMBED-Care team from UCL and King’s College London an opportunity to collectively ‘have a go’ at public engagement.