Our work with government

Our public affairs work aims to influence the government in England and Scotland so that they take action to improve palliative, neurological and bereavement care and support.

Annual Lecture 2019 guest speakers


In England, we have been involved in raising the profile of end of life care (which contributed to the Government publishing the first-ever national commitment on end of life care), making the case for neurological conditions to be given greater priority in the health system and sharing our expertise about the impacts of bereavement on people’s lives.

Key activities over the last year and priorities going forward include:

  • Campaigning for the government to end the funding crisis facing the independent hospice sector and commit to covering 70% of the costs of specialist palliative care provision. Our research shows hospices will be required to fundraise almost £600 million each year in order to stay open and meet the increasing demand for our care over the next decade. To ensure these vital services can continue to support all those who need it, we are calling on the government to urgently commit to an increase in statutory funding (March 2021). To gain wider support, we hosted a roundtable with MPs, peers and hospice leaders discussing the funding challenges facing the sector and setting out what needs to be done to guarantee the survival of hospices across the country and help ensure that in the future everyone has the best possible care at the end of life (June 2021).
  • Submitting evidence to the Health and Social Care Committee inquiry on the government's White Paper setting out legislative proposals for a Health and Care Bill. Whilst we welcome the overall move towards integration and horizontal collaboration, we raise pressing concerns around funding and commissioning, accountability of powers, workforce and social care (March 2021).
  • Advocating for the government to introduce statutory bereavement leave for all employees for the loss of a close relative or partner. Currently in the UK, there is no statutory right to paid leave, leaving potentially thousands of workers unprotected. Our research shows workplace grief costs the UK economy £23 billion per year but this cost could be significantly mitigated by ensuring workers have time off to grieve. A coalition of MPs, charities, businesses, faith leaders, and healthcare professionals, supported our letter to the Business Secretary, calling on the government to bring forward this legislation in the upcoming Employment Bill (January 2021). MPs and people affected showed their support for the campaign in a powerful video ahead of the Queen's Speech (May 2021).

Scottish Parliament

In Scotland, our public affairs work involves giving evidence to parliamentary consultations, meeting with MSPs, and shaping government policy. Our campaigning work has led to the review of Scotland’s standards for neurological care and ultimately to the first-ever Neurological Care and Support Action Plan. We have also pushed for out-of-hours palliative care and for better access to bereavement support.

Key activities over the last year and priorities going forward include:

  • Our briefing for candidates standing for election in May 2021, setting out three key priority areas for the new Scottish Parliament.
  • Making policy proposals, together with Reform Scotland and Marie Curie to improve the support offered to carers after bereavement (July 2020). For many, when their caring role ends so does the vital support they receive from benefits and tax credits, peer support, and even their identity as a carer, as well as their purpose.
  • Working with a wide coalition of organisations to develop Scotland’s Bereavement Charter (May 2020) which is being taken forward to enable anyone who is grieving to feel supported in their grief.
  • Working with the Scottish Government on their consultation on a new national neurological action plan. We’ve been working closely with everyone involved to ensure that the plan is holistic and person-centred - these are key Sue Ryder values.

Elinor Jayne is our Head of Influencing, and Niamh Buckingham our Policy and Public Affairs Officer. For further information or requests for parliamentary briefings please get in touch.

Download past parliamentary briefings and consultation responses