From Royal engagement to community engagement

A guest blog post by Peter Ellis, Chief Executive of the Richard House Children’s Hospice

We were delighted, if a little surprised, to welcome two television news crews to our opening celebrations for Children’s Hospice Week (CHW) earlier this month.

While I’d like to think Sky News and ITN came to report on the innovative care we provide to the children, young people and families Richard House supports in North Central and North East London, I know their real interest was in Catherine, Duchess of Cambridge’s support for CHW.

The Duchess of Cambridge, in her capacity as the royal patron of East Anglia’s Children’s Hospices, recorded a heartfelt appeal urging people to support their local children’s hospice and described the work children’s hospices do as “transformational”.  The media’s interest in this first-ever video message by the pregnant Duchess of Cambridge catapulted children’s hospices to the top of the media agenda at the start of CHW and all of us have benefited in some way from her support.  She has given many of the children’s hospices across the UK a national platform to talk about the work we do.

For children’s hospices this has been a critical boost in informing people about our work. Against a backdrop of changes in NHS and local authority commissioning and funding of care, media interest in anything the Duchess does has given us all the opportunity to distinguish what children’s hospices provide from the care and support found in adult hospices.

The reporters we hosted were surprised by what they found at Richard House; a bright, happy hospice filled with activities representing living for  children with life-threatening and life-limiting conditions as well as that of their siblings, parents, friends and wider families. They witnessed firsthand some of the activities we offer here such as craft sessions and drama.

What we were also able to tell the reporters was how important working with the communities we serve is to Richard House.  I believe that we embody the change in attitudes that has characterised shifts in both children and adult hospices over recent years.  We believe in the pursuit of equity, the active participation of children, young people and their families and their empowerment. We recognise, especially being based in one of the poorest English boroughs, the social determinants of health as well as the fact that all communities, on a daily basis, could actively support families who live with death, dying, loss and grief.

The work we are currently undertaking supports the wider move towards compassionate communities where the hospice provides training and support but families are supported by their friends and neighbours in their own homes.

We are currently working hard to look beyond the hospice and learn about the community in which we are based. We are engaging with community groups and organisations providing education and information, sharing expertise and raising awareness of the support we can provide. We regularly visit with businesses, faith groups, and schools, engaging pupils in conversations on death, dying loss and bereavement. We also encourage people to visit us and think of Richard House as a resource to them, too.

At the moment we support or are in touch with around 300 families from our catchment area but research suggests there may be as many as 3000 children locally who would benefit from the kind of support we offer.  The way our service is currently structured, we couldn’t support 3000 children all of a sudden, nor should we be the only source of support. We believe that as a hub for a wider network across North Central and North East London, working with other providers of care, Richard House could become a point of contact, a place for information, learning and development. In this way we could enable the support of the 3000 families, facilitating the delivery of joined up care that is consistently and effectively offered as a virtual network of support.

It is an ongoing and long journey ahead. There are a number of tasks we have to complete and research before Richard House can fully realise its vision of communities having space where they can journey together to create memories of living and dying.  We need to know more about the hugely diverse and sometimes transient nature of the communities around us, as well as their needs and attitudes in relation to seriously ill children and young people.

We believe very strongly, however, that we should strive for a role within our communities in which Richard House works in collaboration with others to provide holistic care for children and young people with life-limiting, life-threatening conditions and complex healthcare needs, helping families choose when, where and how they receive care and support.

We also believe it is our role to support individuals, families and communities of all faiths and those with no faith with living, dying and death and to promote education and understanding of issues to do with living, dying and death.

To explore this kind of future for children’s hospices, Together for Short Lives, the leading UK charity for all children with life-threatening and life-limiting conditions and all those who support, love and care for them, including families, professionals and services such as children’s hospices, has established a Engaging Communities Action Group, which I chair.

The Action Group aims to:

  • Raise awareness of children’s palliative care within communities through engagement and education
  • Reengage children and young people with palliative care needs with their local communities and
  • Encourage local communities to support children and young people with palliative care needs and their families and the services they use.

The success of this work will require a paradigm change in our work, we need to move away from “being in charge”, we need to be able to let go and work with whole community approaches. The concept calls for integration between professional and personal roles and acknowledges that palliative care is everyone’s business, not just the realm of the professional.

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