We aim to influence government in Scotland and England so that they take action to improve palliative, neurological and bereavement care and support.
Our public affairs work in England ranges across a number of different topics that are important for people with neurological conditions and those at the end of life.
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 how NHS continuing healthcare is working ‘on the ground’. We also act as a key member of a number of alliances such as the Neurological Alliance, Continuing Healthcare Alliance and the End of Life Care Coalition.
Niamh Buckingham is our Policy and Public Affairs Officer in England.
Key activities over the last year include:
- Submitting evidence to the Health and Social Care Select Committee Inquiry looking into Delivering Core NHS and Care Services during the Pandemic and Beyond (May 2020). We are calling on the Government to work with the social care sector to respond to the anticipated growing need for specialist palliative care, bereavement support, neurorehabilitation and community care services in the wake of the coronavirus crisis.
Submitting evidence to the Digital, Culture, Media and Sport Committee regarding the impact of COVID-19 on the charity sector, calling on the Government to grant access to emergency funding for the hospice sector (April 2020).
- Supporting our #JustSaySomething bereavement campaign by asking MPs to sign our Early Day Motion #149 sponsored by Carolyn Harris MP. We are raising awareness of the poor mental health associated with grief, encouraging people who have been bereaved to open up to their support network and ask for help from their GP if they need it, and calling on those supporting someone struggling with their grief to encourage conversation and be ready to listen. Download the EDM parliamentary briefing (February 2020)
- Teaming up with the Chartered Society of Physiotherapy, the Royal College of Occupational Therapy and a range of other charities and organisations to call on our politicians to ensure everyone has a 'right to rehab'.We believe that everyone with a neurological condition and with a life-limiting condition should have a right to high-quality rehabilitation services that meet their needs. Download the Manifesto for Community Rehabilitation (September 2019)
- Submitting evidence to the Work and Pensions Select Committee Inquiry looking into Bereavement Support Payment (May 2019). We are calling on the Government to better support those who have been bereaved as many are missing out on vital benefits and face falling into debt to pay for basic funeral packages.
- Publishing our report 'Time to get it right' (March 2019), giving a comprehensive picture of how people with neurological conditions are being let down by health and social services in England. We are continuing to pressure the Government to introduce a national plan for neurological services to provide direction and coordination.
- Releasing our report 'A Better Grief' at our annual parliamentary reception (March 2019), revealing the stigma and taboo surrounding talking about death. We are working hard to maintain a national conversation about bereavement, especially amongst employers, healthcare professionals and the Government.
Our public affairs work in Scotland is carried out in a number of ways – through campaigns, giving evidence to the Scottish Parliament, prompting debates in the Parliament, meeting with MSPs and liaising with Scottish Government officials.
Since starting public affairs work in Scotland in 2015, we have campaigned on a number of issues. Our Rewrite the Future campaign for the 2016 Scottish Parliament elections led to the current review of Scotland’s standards for neurological care and ultimately to the Scottish Government implementing the first-ever National Action Plan on Neurological Conditions. We’ve also been making the case for out-of-hours palliative care and support and for better access to bereavement support.
More information can be found out about this in the campaigns and reports pages.
Elinor Jayne is our Head of Influencing, with responsibility for Scotland.
Key activities over the last year include:
- Working with the Scottish Government on their consultation on a national neurological action plan (February 2019). We’ve been working closely with everyone involved to ensure that the plan is holistic and person-centred.
- Showcasing our virtual reality therapy to MSPs at Scottish Parliament (October 2018), soon to be rolled out as a form of mood-boosting therapy across all of our neurological centres.