Development and Innovation Award winners
Mary Stevens Hospice has provided palliative and end-of-life care to the people of Dudley since 1991. It provides 24/7 specialist care for adults aged 18 and over with life-limiting conditions within a 10-bed in-patient unit, a day services unit that offers support five days a week, carer support, bereavement care, holistic therapy and community outreach. Despite only receiving a small percentage of statutory Government funding towards running costs, hospice care is free of charge and reliant on fundraising efforts and support from the local community.
What is No Barriers Here?
In 2019, the Masonic Charitable Foundation Trust released a grant fund managed by Hospice UK. The hospice had built a strong relationship with people with learning disabilities and healthcare staff, with initiatives such as peer-reviewed services, the development of accessible information, palliative care focus groups and community engagement.
A co-production team was formed to apply for the grant and included a member of hospice staff, people with a learning disability, a learning disability support manager and an art psychotherapist. We knew that advance care planning, despite numerous easy-read versions, required a more equitable approach to ensure individual choices and wishes for end-of-life were discussed, heard and understood by healthcare staff. The co-production team developed three equity-orientated workshops that used arts-based methods to follow the context of traditional advance care planning conversations, with each workshop exploring a different area. We called this No Barriers Here.
Despite the pandemic, No Barriers Here and its workshops were designed in co-production and co-delivered online and face to face once Government restrictions had eased. Three cohorts of workshops were facilitated and people with learning disabilities participated over three consecutive weeks, with support from care staff to think about what mattered to them at the end of life. The results of the workshops were rich and detailed conversation and advance care plans created from arts-based methods. The learning from the workshops was co-developed into education for healthcare professionals and delivered by the co-production team. A film was commissioned about the first phase of No Barriers Here and is now used in several palliative care education programmes.
We realised we had developed a methodology that could improve the gaps in palliative care provision and tackle inequity that marginalised people and communities’ experience. We were delighted when No Barriers Here won Hospice UK’s Tackling Inequalities Award 2021 and was shortlisted for the National Learning Disability and Autism Awards and NHS Improvement Awards. During this time and as the project came to an end, the hospice was approached to apply for an NHS Charities Together grant to explore using No Barriers Here with people excluded by identity, culture, ethnicity and race as a two-year research study and service improvement project.
The pandemic had further highlighted the disparity in healthcare and systematic inequalities that minoritised ethnic people and communities experienced; in addition to the global impact of the death of George Floyd and the Black Lives Matter movement, it felt important to create a space for this work. The study commenced in 2021 and ended in April 2023 and, once again, a co-production team ensured it remained accessible and was guided, challenged and influenced by lived experience. A research report is available to read here and includes identified recommendations and implications for practice of how services can respond to and improve palliative care systems. A film funded by the National Lottery is also available about the study: No Barriers Here: For people excluded by identity, culture, ethnicity and race.
Sharing our learning
As No Barriers Here became nationally recognised as a movement for equity-informed advance care planning, we wanted to share our learning with others and support people to deliver No Barriers Here workshops within their communities. We developed a facilitator education programme and community of practice in March 2022. To date, over 130 healthcare workers have attended the training and it has been commissioned for bespoke delivery in several areas of the UK. It has also been delivered in Portugal and we have one facilitator using it in an aged care facility in the Azure Islands!
No Barriers Here is transferable and is being delivered in various settings, including children’s and adult hospices, acute care, primary care, dementia services, learning disability services and community settings. One locality reported an increase in advance care plans and a decrease in avoidable end of life hospital admissions for people with learning disabilities.
It is overwhelming to see the real and tangible impact of No Barriers Here and we are exceptionally proud of how it has evolved since 2019. No Barriers Here has created many opportunities to work in co-production, share our work and gently disrupt the inequity that underserved people and groups experience. It has enabled further funding for films and a website (www.nobarriershere.org). We have presented at national and international conferences, co-authored conference papers, published blogs and written book chapters.
Our vision for the future
It was a privilege to learn that No Barriers Here was a finalist for a Markel 3rd Sector Care Award. We attended the ceremony on 3rd March 2023 with members of our past and present co-production teams and were overjoyed to win the Development and Innovation Award! It is utterly amazing to have the work of Mary Stevens Hospice, No Barriers Here and our partners recognised, and we are grateful to those who have supported and championed us on our journey.
Likewise, we are delighted that No Barriers Here is being used at a national level and highlighted as an example of good practice in equity-informed care. The Marie Curie Research Impact Fund awarded Mary Stevens Hospice funding to improve equity in palliative care for LGBTQ+ people and ‘It’s More than Rainbows in Receptions’ is using co-production and No Barriers Here to explore the experiences of death, dying and bereavement for LGBTQ+ people. We hope that, by using an approach that has its roots in co-production, we will support more healthcare workers, organisations and systems to follow our lead and see what can be achieved if we work together with communities.
No Barriers Here has embedded equality, diversity, inclusion and innovation within everyday practice and in all that we do. It has proved both its impact and sustainability from an original grant funding programme, and we are excited to see what happens next as we begin to expand our team.
It is vital that palliative care services are more adequately funded to not only cover the core running costs but to include essential programmes like No Barriers Here that focus on equity-informed care. We need to continue to disrupt and dismantle barriers, have curiosity and strive to better understand the needs of under-represented people and communities to provide the best possible palliative and end of life care to all. We can and we must do better.