Reports, briefings and submissions

This page contains all our recent reports, formal submissions to consultations by government and briefings for MPs, MSPs and Peers.

Speeches

We work with our service users to make the case for better palliative, neurological and bereavement support. This means we gather views, carry out research and have a good base of evidence to support our positions.

The Sue Ryder ethos of high quality, person-centred care is reflected in all of our work, and we respond to government consultations and brief politicians on how this should be the case wherever people live, and whoever provides the care and support.

We are always keen to speak to people about their experiences of palliative, neurological and bereavement support so please do get in touch if you have anything to share with us that may help us make the case to the government.

UK

In March 2019, we published a new research report shining a spotlight on the UK’s experiences with death and bereavement. It revealed that, although 7 out of 10 adults have suffered at least one bereavement in the last five years, the ‘D word’ remains one of our society’s final taboos, with a veil of silence around the subject.

In late 2018, Sue Ryder commissioned the University of Birmingham to look at the last ten years of research on bereavement in the UK and produce a report summarising the state of the evidence.

In September 2018, we launched an analysis that showed investing in proactive care for people with neurological conditions saves the public purse money.

Scotland

Most recently, we published a joint report with Hospice UK that shows bereaved people in Scotland are not accessing the support they need. As a result, we are calling on the Scottish Govenment, NHS and integration authorities to take forward our recommendations.

In the run-up to the 2016 Scottish Parliament elections, we revealed that care and support for people with neurological conditions were inadequate and patchy, with some people being inappropriately placed in older people’s care homes.

In 2017, we wanted to see what progress had been made in improving neurological care across Scotland.

We also revealed that many people at the end of life, and their families, have no meaningful care and support overnight and at weekends.

England

In August 2018, Sue Ryder commissioned a Freedom of Information (FOI) request to all Local Authorities in England asking about their services for people with neurological conditions. This report sets these findings in the context of other recent research and an earlier FOI conducted by Sue Ryder which was targeted at CCGs. The report makes recommendations to policy makers on how to improve care and support for people with neurological conditions.

In 2017, we teamed up with the Neurological Alliance to examine the health system in England from the perspective of people with neurological conditions. We found that the system was consistently failing to prioritise their needs, and consistently failing to deliver.

I see myself as one of the few fortunate ones as there are many MND sufferers out there who, due to the postcode lottery, have limited access to much of this care and equipment.

But this needs to change – everyone with a neurological condition should be entitled to far better care packages so that they can make the most of the life they have left."

Calum Ferguson, who has motor neurone disease and has a care package that allows him to live at home.