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My name is Rhys, a first time dad blogging about my adventures and experiences of being a parent. [email protected]

Project ‘key’ to addressing access to end of life care for marginalised groups

A project aimed at reducing barriers to access to end of life care for a variety of groups has shared its findings and its future plans at an event attended by Cabinet Secretary for Health and Social Services, Vaughan Gething.

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In Cardiff and the Vale, Marie Curie has been working with people with dementia, people with learning disabilities and people with different or no religious beliefs over three years as part of the Big Lottery-funded Including Diverse Communities in End of Life Care project.

The groups were identified based on research around gaps and challenges in palliative care provision and through consultations with members of these groups in Cardiff and the Vale.

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Among the groups involved in the project were Cardiff People First, a Service User Review Panel from Gwent and their carers who are supported by the Alzheimer’s Society and a number of different faith groups from across Cardiff. Monica Reardon, former project manager and currently divisional programme manager for the charity, said:

“The project has allowed the charity to work directly with these groups to ensure their voices are considered as we plan, develop and deliver our services and their feedback has enabled us to make changes to both increase access to and to improve the inclusivity and accessibility of our services.” 

Now, three years on, the team behind the project has implemented a range of improvements and made further plans and recommendations for what needs to be done. Among the changes already made at the hospice are adaptations and plans for further works to make the hospice a dementia friendly hospice, creating and recruiting a spiritual care coordinator to look after those with any religious or non-religious beliefs and a film explaining the services; an idea proposed by and featuring people with learning disabilities.

Emily Lewis is a member of Cardiff People First and was instrumental in producing the film.

“Thinking about a hospice can be scary” said Emily.

“So for people with a learning disability to be able to sit and watch this film and have an understanding about what goes on behind the doors of a hospice makes it much less scary.”

Cabinet Secretary for Health and Social Services, Vaughan Gething, opened the project event on 20thSeptember at Penarth Pier Pavilion. Mr Gething  said: “This project and others like it are key to addressing the barriers faced by marginalised groups in accessing the quality end of life care everybody deserves.

“This can be achieved by the third sector working with the Welsh Government, health boards and social care.”

Andrew Wilson-Mouasher, divisional general manager for Marie Curie Wales and the South, explained how the project had helped springboard national work in how the organisation nationally approaches dementia care, had prompted the development of easy read booklets and would see better data collection across all 9 of the charity’s hospices.

He said: “From a small project to support our hospice here, it’s had a massive influence across the whole of our organisation.  The ongoing work we will continue to do will help us develop our service in the future.”

These outcomes and recommendations will continue to support Marie Curie beyond the project to reach more people affected by terminal illness and to improve the way terminally ill people are cared for in the UK.  The charity also hopes the information shared in the report can be of value to other service providers in supporting equitable access to palliative care services for all people.

See the full report here: https://www.mariecurie.org.uk/help/hospice-care/hospices/cardiff/services/diversity-project