Honest, open discussions and mutual respect between nursing teams and family members are key to bringing about good outcomes for seriously children who are part of Gypsy and Traveller families, a new resource published today has set out.
Discussing a child’s personalised care plan can also help to make sure that families are supported to provide on-going, complex medical care on traveller sites 24 hours a day.
The new guidance forms part of a new resource for commissioners, service providers and health, care and support staff called ‘Care Committed to Me’. The resource aims to help all those planning, funding and providing care to deliver high quality, personalised palliative and end of life care for Gypsies and Travellers, LGBT people and people experiencing homelessness. It has been produced as part of a multi-organisational project led by Hospice UK, Marie Curie and Together for Short Lives, in partnership with Homeless Link, the National LGB&T Partnership and Friends, Families and Travellers (OFTT). It has been funded by NHS England, the Department of Health and Social Care and Public Health England.
The ‘Care Committed to Me’ resource includes a case study which describes the support offered by a nursing team to a Romany Gypsy family who were living on a local authority Traveller site while providing care to their child who had a life-threatening illness. They supported the family for more than 10 years, until the young person died.
Andrew Fletcher, Chief Executive of Together for Short Lives, said:
Life-limiting conditions do not discriminate.
“These conditions affect children and families from across the rich and diverse range of communities and backgrounds that comprise our society. I welcome this new resource, which should help to make sure that children have access to the palliative care they need, regardless of how or where they live. I urge all those who commission and provide palliative care to seriously ill children and their families to take this important new guidance into account as they seek to make palliative care choices a reality in their local areas.
Commenting on behalf of the project group, led by Hospice UK, the charity’s Chief Executive Tracey Bleakley said:
“Everyone approaching the end of life in the UK, no matter who they are, should receive high quality, timely care. However, there are still glaring inequalities in access to end of life care and sadly too often people from groups in our society are shut out from the support they need, whether due to stigma or systemic organisational barriers.
“Hospices are championing an equality-driven approach to end of life care and many have successfully expanded access to their services to better support the diverse needs of their local communities. However, there is much more to be achieved.
“Hospice UK is committed to sharing the learnings from this insightful resource with other hospices and together continue our efforts to make access to end of life care more equal.”
Professor Steve Field, Chief Inspector of General Practice at the Care Quality Commission, said:
“Good care is person-centred and responsive to the needs of the individual – no matter their circumstance or background, everyone has the right to high-quality, compassionate care.
“As a GP and as Chief Inspector of General Practice, I have seen how services, healthcare professionals and third sector organisations like hospices can work together to make sure that people whose voices are rarely heard are listened to and supported.
“However, there is huge variation in the quality of care that people receive at the end of their life. For everyone to access the care that they deserve, healthcare services and the wider system need to grasp the vital roles that they have to play at a local and strategic level. Without this, we risk missing the opportunity to improve the quality, and importantly the co-ordination, of care for those people who may be vulnerable, socially excluded or seldom heard.”
The project is part of the Voluntary Community and Social Enterprise (VCSE) Health and Wellbeing Alliance (HW Alliance). The HW Alliance is a partnership between voluntary sectors and the health and care system to provide a voice and improve the health and wellbeing for all communities.