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Watching the rising tide towards more personalised care
In this blog, Simon Chapman, newly appointed Deputy Director of Personalised Care at NHS England, looks to the growing importance of personalised care and working with local communities to secure the future of health and social care.
“Watch for the big wave”, my Dad would say as we stood with our body-boards in the Atlantic off North Cornwall, in the days before wetsuits were readily and cheaply available.
Many things need to come together to make great surf. Wind (it is better after a storm), “fetch” (the length of water the wind has blown over), tide, current, moon, local conditions and geography. Even then, not every wave is the same. You need to watch for the weight and pace of water as it rises towards you. Get the right wave and you’ll have an exhilarating ride all the way into shore. The wrong one will tail off disappointingly. It’s sometimes said that the big wave comes once in every seven. Miss your wave, and you’ll have to wait a while for your next opportunity.
Arriving in the Personalised Care Group, and joining NHS England after 15 years in the voluntary sector advocating for people to have greater voice, choice and control in decision-making about their care, I have the same sense of anticipation and excitement that I have when watching a great sea building. A weight is rising beneath personalised care, of evidence, commitment, technical know-how, take-up and support. Mass and momentum are growing; we need to catch our wave.
What do I mean by that? First, there’s greater coherence in understanding what personalised care is. In the past it’s been fragmented, with different voices contending for example for social prescribing, personal health budgets, self-management, or patient activation. We can now see that these approaches are not competing but complementary. Nationally we have developed a comprehensive model for personalised care, which demonstrates how these different components work together to create an effective whole-population approach. It is encouraging to note that the Integrated Personal Commissioning programme, which brings together the components of personalised care, has already enabled over 70,000 people to benefit from a personalised care and support plan.
Similarly the penny is dropping that if we are to break the endless cycle of failed attempts to integrate systems, we need to try something different. Specifically, that means integrating and aligning organisations around the needs of people, and the complex ecology of their lives and communities, not the needs of the system. Integration needs to start with personalised care. This is not just technocratic jargon. Giving people greater choice and control is about social justice and rights. It helps tackle unfairness and inequality. It improves outcomes. It changes the relationships between the system and the people it’s there to serve. In a modern open society, this transformed relationship is essential.
Next, and crucially, personalised care is not being left to fend for itself. This year there are plans to work with a number of areas across the country who will receive funds and support to expand personalised care locally, and demonstrate how the comprehensive model works across their population. In linked work, other localities, with experience and expertise for example in personal health budgets, are sharing their knowledge and mentoring colleagues in other CCGs across the country. There is a growing community of practitioners.
This is emphatically not to say that’s it’ll be an easy ride from here. There are rocks to watch out for. For example, not every part of the NHS has lost the institutional muscle memory that reflexes inwards to focus solely on its own priorities and resources, and shuts down collaboration. Dedicated work is required to build the muscle groups necessary to work effectively in partnership outside the statutory health system, and let go of some power and control. This is advancing in some places, but much more remains to be done. Similarly the renewable energy of people and communities will not renew all by itself. Commissioners need to invest strategically in local voluntary and community groups.
I am optimistic. The tide is changing. Conversations are shifting from “why” to “how” should we do this? There is a groundswell not just of enthusiasm, but tangible commitment and proactive determination to change the way things are done, and to work very differently with people and communities.
Taking end of life care, where I’ve worked for the last 15 years, as an example. Next week is Dying Matters Awareness Week, and my former colleagues are asking all of us “What Can You Do…in your community?” to support people through dying, death and bereavement. Public health palliative care is disrupting traditional models of practice. Recognising and respecting the expertise and resource within people and communities is critical not just in end of life care but for the future of the whole health and care system.
Coming back to my Dad. He died very suddenly last summer from a brain haemorrhage. The strength and depth of kindness, love and practical support my Mum has received from her friends and community has been extraordinary, and a real help to her in the shock of sudden grief and bereavement. This compassionate community response has made a true difference.
For all of us who want to see personalised care woven through the warp and weft of the NHS: this is our moment to ask ourselves: What can I do next, to make this happen?
Dear Simon, wonderful to see you in a position which will make full use of your skills. You were so blessed that your father did not have prolonged suffering. I am sure that you are being a tremendous support to your mother. My mother’s care cost us over £230,000 so the issues are grappling illustrating the difficulty of the issues you are grappling with professionally. It was such a disappointment when nothing came of the seminar arranged at Richmond House by Norman Lamb. I wish you every success. I havebeen in touch with Clare Henry trying to get the British Geriatrics Society to include a commitment to good end of life care for the elderly in their objectives. I am applying to the Alzheimer’s Society for a job as a Dementia Support Manager (in the first instance), and was wondering whether you would be so kind as to provide me with a reference. I am afraid that my computer died last year and I lost all my address book.
Thank you, it’s not just for end of life, but everyone who struggles on a daily basis for the care and support. It’s when someone else decides what you can have with regards to care support. Having been informed that I can have such care for getting washed, dressed and fed because of lack of finance is illegal as far as the care act goes, but it’s the knowledge that without support I can’t get out. So I become a hermit. Im fighting it, have been for 2+years, and finally someone is listening. It results affect many other care areas including mental health crisis. Social service, NHS provision. Roll on the day when I’m back 8n the driving seat. At present someone else has taken charge of the reins. It’s not a nice feeling at all
Thanks for sharing your experience Pam, and showing why having a greater say over your care is so important. I’m so sorry to hear about the problems you’ve been having, and hope they are sorted out soon, and that you get the choice and control you want.
Personal health budgets (PHBs)are part of this greater participation of patients in their own care.
As this Tory government carries on with its covert privatization of OUR=NHS these PHBs will become caps on what we patients can expect to get from THEIR=NHS.
This is standard procedure in the individualized Insurance based system which powerful forces are pushing to take over our “Free at the point of need” system.
Around £75bn of NHS England’s annual budget of £110bn is now in the hands of the private sector CCGs and their business chums. These cabals even appoint NEDs to represent us on their Boards. How “personal” is that?
Almost daily we are hit with announcements that yet another treatment is to be removed from being prescribed to being Buy It Yourself. Not because it’s ineffective, but we don’t deserve it anymore.
NHSE is as hierarchical as ever and whilst it remains under the control of its present Board
personalised care will be a facade, not a fact.
I’ve read this article 3 times and I still don’t have a clear understanding of the underlying message it, or the author, is trying to make.
Perhaps fewer long and rambling analogies and straight talking concentrating on the specific subject/s would help?
Thank you Simon. So much lip service is paid to the concept of ‘ person centered care’. I think all of us working to meet the needs of people in the nhs long to see more integration between services and a personalized approach. Lovely to see you in this new role!