A New Zealand perspective on palliative 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 Ross Drake, from Starship Child Health is a dedicated paediatric healthcare service and major teaching centre in New Zealand

I have been asked to provide an international perspective on the work of Together for Short Lives going into the future by focusing on the questions, “What does great children’s palliative care look like in 2028?” and, “What needs to happen in order to get there?”. Projections into the future are a bit like prognosticating on the longevity of children with life-limiting illness; fraught with inaccuracy which can potentially be harmful to those it directly affects.

My preference is to first look back, at what has gone before, as I would do when providing an indication to parents on what their child may face in the future. Invariably, a child with a life-limiting illness will face very similar obstacles in the future as they had previously faced. My experience in developing palliative care for children in New Zealand and seeing and hearing of comparable stories from around the world of services in varying stages of development, no matter the resource setting, would suggest a similar ethos is applicable for children’s palliative care (CPC) moving into the future. 

What Together for Short Lives has been outstanding in achieving is providing, at no or minimal cost, the fundamental building blocks for the three areas of service development; strategic, operational, and clinical. This egalitarian attitude has been invaluable and the work accepted and used by many around the world with open arms. More importantly, the work has not been left to lose potency with time as frequent revisions have been done to maintain relevance. The very fact that Together for Short Lives is asking the above questions is indicative of the forward-thinking attitude of the people, past and present, who have provided such wonderful guidance to the United Kingdom and international CPC community. Maintaining this attitude will be vital “in order to get there (sic) great CPC in 2028”.

The other exceptional function of Together for Short Lives has been advocacy. This advocacy role has not only been very effective for children with life-limiting conditions and their families in the UK but globally as well. Again, through their willingness to share knowledge, mentor champions and partner other influential and, potentially influential, organisations around the world. Together for Short Lives has been and continues to be in the unique position of being at the forefront of CPC development internationally. This position carries with it the responsibility and burden of expectation; expectation from within and expectation from “without” (those looking in and, at times, without direction, without support and without resources). I would suggest by being at the front of the wave requires not only vision to read the flow of the wave you have created but to look outward to identify other waves that are in motion so you have the opportunity to join these to maintain, or even enhance, the momentum and direction.  

The distance from New Zealand to the United Kingdom (well almost anywhere really) does make it difficult to know exactly how Together for Short Lives is handling the vanguard responsibility. However, I am aware of work they have been involved with that attempts to address resourcing and resource allocation, so oft a baulk point for organisations. This is vital work, particularly in the UK where there are an (over) abundance of children’s hospices with the high costs that entails. Important also for Together for Short Lives because of the leadership role it has taken on for children’s hospices since the amalgamation of associations.

If there is one thing that “needs to happen in order to get to great CPC in 2028” it is having the right mix of services and models of care to deliver equitable, convenient, timely and quality care for all children with life-limiting illnesses and their families where it is desired and appropriate to be provided. This, of course, is not the same as good care being provided in a setting that can only be accessed by a minority. My current perception is there is quite some way to go for the UK to achieve this. The seeking of exemplars of cost-efficient and cost-effective models of quality CPC service delivery around the world which could be adapted to the UK is a prime example of the need to look outward. In writing this I fully acknowledge the presence of some excellent working models in the UK that strive for this utopia. 

To end this blog I would like to take you back to the beginning. A key characteristic of high functioning, efficient teams and organisations is regularly taking the time to pause, reflect and refresh. Refresh the group’s mission and vision and from this the strategic direction. This exercise, this request, has that very vibe and speaks highly of Together for Short Lives and its leadership as an effective organisation. However, in the process of revitalizing, do not lose sight of the past since as stated by the Uruguayan journalist and writer, Eduardo Galeano, “History never really says goodbye. History says, See you later”. 

What do you think? 
Tell us what you think of this vision for Children’s Palliative Care by posting a comment below. You can share more detailed comments by completing this short survey. You can also submit your own blog to support this series by emailing emma.dixon@togetherforshortlives.org.uk

We are keen to hear from as many people as possible, so do share this blog with your stakeholders and networks. You can also engage with the conversation on Twitter, using the hashtag #forthe49000

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