Editorial

Visionaries

This year I have the privilege of working with a number of professionals across four hospices in Scotland. My role is in supporting and coaching my colleagues to demonstrate the value of their current and planned services by applying the principles of economic assessment in practice (McMahon and Sin, 2015). This approach to applying HM Treasury guidance in practice is both robust and pragmatic and I know from my experience to date, and the testimonies of previous participants, that this knowledge and these skills combined with professional knowledge, skills and expertise empowers health and social care service provider staff to marshal impactful evidence that influences decision makers, enabling the sustainability, improvement or transformation of services as required.

By taking a whole systems perspective, the benefits of services are identified and evidenced from a range of standpoints, including, first and foremost, patients and carers. Other potential beneficiaries taken into consideration may be staff, the organisation, other parts of the health and social care system and the wider economy.

With each group of professionals I have had the opportunity to work, I gain incredibly uplifting insights into the amazing work that they do, day in day out. Our health and social care systems are far from perfect, but we must never stand for the undermining of the phenomenal talent, wisdom and dedication of the nurses and other professionals who provide health and social care services across the UK.

History has shown us that, in challenging circumstances, understanding, valuing and preserving what we have can be at best difficult and at worst impossible. In a rare move for me in the editorial, away from making the immediate connection here to the both bewildering and frightening current political landscape in the UK and elsewhere, I am choosing to take a different, and perhaps somewhat cathartic path – a path in which, I hope, readers too may find inspiration.

I recently visited the Dumfries House estate in East Ayrshire in Scotland. This is a part of Scotland that used to have a thriving coal industry and, like many other parts of the UK, has declined since the demise of the industry. Dumfries House, with its unique Chippendale furniture collection, was in the process of being sold off when the Duke of Rothesay, HRH Prince Charles, stepped in. The story of his intervention: the fundraising; the steps taken to preserve the house and the furniture collection; the reinvigoration of the estate into a sustainable agricultural, horticultural and event site providing both jobs and learning opportunities for local citizens and the building of an eco-friendly village to generate income and build a sustainable community was captured in a television programme which can be viewed on YouTube (https://www.youtube.com/watch?v=CMSN37hMnhQ).

Very few of us can comprehend the magnitude of the investment required to preserve the house, its unique furniture collection or develop the estate. Not all of us can connect with his passion, and motivation, for preserving a furniture collection. More of us may admire his vision and ambition to kick start the regeneration of the local community.

I for one, was most moved by that which perhaps the majority of us may be able to connect with. As I walked around the walled garden I felt both uplifted and inspired by the raised beds of exquisite flowers, vegetables, and wild flower meadows; the fact that this incredibly beautiful place was created by an army of volunteers; that it generates produce year on year; that it creates a sustainable place where insects flourish and where school children and young adults learn and apply horticultural skills. This was the part of his vision that I was most able to connect with and could learn from as I have been planning a wild flower meadow, albeit on a slightly smaller scale, for quite some time.

The hospice movement was also built on a vision. At a time when little attention was paid to end-of-life care, Cicely Saunders had a vision. Her vision was that the end of life for people affected by cancer could, and should, be peaceful. Saunders was first and foremost a nurse, although she later trained as a medical social worker and then as a physician. In parallel with Prince Charles, Saunders also fundraised to see her vision become a reality. St Christopher’s Hospice in London was the first purpose-built hospice in the UK designed specifically to provide holistic care for people affected by cancer at the end of their lives.

Over time, this vision has developed, in part because cancer has been increasingly recognised as a long-term condition rather than an end-of-life diagnosis. This is coupled with the acknowledgement that cancer is not the only long-term condition that needs particular expertise to ensure people affected by these conditions achieve the best possible care at the end of their lives, wherever they choose to be, at the end of their life.

As needs change, it is clear that services too have to change. Any changes in services should actively engage all stakeholders. It should, at the very least, be informed and shaped by the wisdom and insights of those who receive and provide services, as well as the best available research evidence. In publishing this edition, at this time, I am delighted that JRN is making a contribution to the research evidence that may be marshalled to inform the service transformation required to realise the contemporary vision of end-of-life care.