Reflecting on my career and the opportunities I have been afforded, the ability to make choices and determine my path along the way has been so vital to ensuring I have been able to accomplish my ambitions.
In my experience, when people do not have a say in what happens to their lives it invariably ends in a less rewarding experience. My recent attendance at the NHSE Programme Board for End of Life Care reminded me of a significant piece of work that was undertaken in 2015 about individual choices of those in their last year of life. The paper was developed by an experienced group of people with lived experience and professionals and is as relevant today as it was when published in 2015. Aptly titled What’s important to me. A Review of Choice in End of Life Care, I would be interested to hear what difference the paper has made to practice.
Central Government responded to this paper by publishing the document; Our Commitment to you for end of life care, The Government Response to the Review of Choice in End of Life Care
Ben Gummer MP Parliamentary Under-Secretary of State for Care Quality at the time noted in the Forward:
“As healthcare has become more successful, our health systems have become focused more on the curative sciences than the caring arts. The result is that when science has reached its limit, our care of dying people is – as recent reports have shown – variable, haphazard and at times shockingly poor.
This is an inversion of how things, properly ordered, should be. If our National Health Service and our care system is to be what we all wish it, we must all put the care of the person at the centre of all that it does…...
Our commitment is that every person nearing the end of their life should receive attentive, high quality, compassionate care, so that their pain is eased, their spirits lifted and their wishes for their closing weeks, days and hours are respected. We shall ensure that all the needs of the dying person – spiritual, physical and familial – are provided for in a way that is as that person and those closest to them wish them to be”
The report committed to the following points of action:
- We will develop more personalised care for people approaching the end of life
- We will put in place measures to improve care quality for all across different settings
- We will identify and spread innovation in the delivery of high quality care
- We will lead on end of life care nationally and provide support for local leadership, including commissioners, to prioritise and improve end of life care
- We will ensure we have the right people with the right knowledge and skills to deliver high quality personalised care
- We will work together with system partners and the voluntary sector to deliver this commitment
- Finally, we will strengthen accountability and transparency to drive improvements
These commitments remain as relevant today as when they were published. However, in order to create a high quality service, we all need to take responsibility for their implementation. This would make a significant difference to people in their last year of life by ensuring they have greater choice and control over their care and where possible their preferred place for care and support.
Professor Bee Wee set out in her presentation to the Board the achievements, ongoing work and work currently being progressed. It was heartening to hear the progress that has been made and the fact that this could be evidenced. There is no doubt that for some people Choice and Control is a reality and that the commitment of Government and the Accountable Officers within of the NHS, Voluntary and Statutory Sectors are making a difference and it would appear to be more than just “fancy words” and Bee’s review represented a true and honest reflection of where we are four years on.
The development of the Personalised Care Directorate in NHSE has made significant and positive progress in changing how services are delivered and is going from strength to strength as it helps to empower individuals to take control and speak out for what they need.
I was curious about how the report had begun to also change the language being used for Health and Social Care and more importantly becoming much more person centred and reflecting the demands of those who are passionate for change and improvements in the world of Care and Health. I thought it would be interesting to see via a word cloud the prominence of the language and I was delighted to see a change from what I have been used to seeing over my many years of serving people in my community.
People, Quality, Choice and Personalised Care are mentioned more frequently than I expected, which sets the scene for real change (Figure 1 image). However, words alone are not enough. Actions and evidence of progress are essential. People’s experiences must improve, with additional resources allocated to sustain long-term, nationwide change which is not reliant on individual EOLC champions. Improvements in maternity care have been achieved with consistent pre and post-natal standards of care. We can adopt a similar approach for death and dying. Buoyed by a growing movement of people in the business of caring for others, we can ensure that Choice and Control are not mere words but a reality which is supported by people with the power to make a difference.
At the recent London ADASS EoLC network, Bee highlighted the new framework for GP QOF points, which adopts a quality improvement approach using two indicators. These include:
- QI003: The contractor can demonstrate continuous quality improvement activity focused on end of life care as specified in the QOF guidance - 27 points
- QI004: The contractor has participated in network activity to regularly share and discuss learning from quality improvement activity as specified in the QOF guidance. This would usually include participating in a minimum of two network peer review meetings – 10 points
The paper can viewed here.
This is great opportunity to improve the experiences of those in their last year of life and an opportunity that we must not miss.
As always, I would like to thank all those working on the front line and to hear about your experiences. Have you seen an improvement over the last four years? Are you ensuring sustainability is at the heart of any changes and do you experience better outcomes for people who are in their last year of life? Please feel free to email me at Johncpowell2016@gmail.com or contact me on Twitter @jcpowell82.
I would also recommend if you have some time reading the role of social workers in palliative, end of life and bereavement care at the following link.
John Powell, MBE