Essential elements of great care
As part of our wider conversation to inform the development of our new strategy, we will be publishing a series of blogs reflecting on what great children’s palliative care should look like in 2028, what needs to happen to get there and what Together for Short Lives’ role could be in achieving that. Today we hear from our patron Dame Elizabeth Fradd.
My view of what great Children’s Palliative Care looks like has changed little over the years. The essential elements for me are that education, social care, and the third sector together with acute and importantly primary care should be truly integrated, so that the total needs of the child or young person and their family are always the primary focus of concern. There needs to be a greater level of shared core training and continuing education in order for this to realistically happen.
The second element is that palliative care should be sufficiently flexible to meet the constantly changing needs of the individual child and family. This requires integrated services to be capable of offering carefully considered choice, and thereby control, for families. Importantly control is not just about making decisions: it is also about feeling included and valued, both of which are as important as how care will be offered. It therefore follows there also has to be agreement and reviews about how much a family wishes to manage themselves, greatly helped when there is a lead worker who acts as a coordinator.
It may be obvious but it is sadly not yet the case in some areas of the country, that there should be easy access to services. This still requires acknowledgement in some quarters. I suspect this may be due to the remaining lack of recognition and understanding amongst some about the case for need, which alongside the lack of appropriate accessible information for families in a format which clearly signposts them through their journey, can make access to services difficult.
The most significant change that needs to happen is the most difficult thing of all – a change of attitude and culture that surrounds children and young people. Children must be seen as warranting expert care in their own right which means talking about the unthinkably difficult that children need palliative care. I have suggested above a role for Together for short Lives in education programmes. However, children also require all of us to be more prepared to speak up on their behalf to those not in service provision to help them understand the issues, indeed some young people known to Together for Short Lives already do this very well. There is a significant role for Together for Short Lives to continue to lobby and negotiate, but to also maybe put greater energy into inspiring the key research questions and thereby collecting the data that will ultimately provide the evidence for some of what I and others believe is needed in order to improve the status quo.
Dame Elizabeth Fradd has spent her career working to continuously improve healthcare, both as a nurse, midwife and academic. She is Patron of Together for Short Lives, and Vice President of Rainbows Children's Hospice, as well as Vice President of Nottingham University.
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