“I was treated for cancer and was shocked at how little the doctors took notice of my views and how little information they were willing to give me.”
Usha Grieve
11 January 2019
Personalised care…will it ever be?
Our thoughts
With commentary-fatigue in mind I’ll try to keep this brief, but nonetheless I think it’s important to talk about the plan and how personalised care for people at the end of life might become a reality.
First, three points that are really important and need both acknowledgement and further thought, but which I’m not going to expand on here:
- There isn’t a big enough focus on supporting people at the end of life
- Advance Care Planning is an essential part of achieving personalised care but this approach is not embedded in the plan. Don Redding makes this point skilfully here and I encourage you to read it
- The commitment to addressing health inequalities is shockingly inadequate (blog on this to follow in the forthcoming weeks)
I think it’s fair to say that everyone now accepts that personalised care achieves better outcomes for all involved. So, it’s no surprise to find numerous mentions to personalised care throughout the plan. Great. This is a win for patients, and for those of us who champion the rights of people to make decisions and share power when planning their care.
I should be pleased about this step in the right direction, right?
Well actually, as it turns out, not really. Instead I feel a bit disheartened. Because for all the mentions of personalised care, the LTP doesn’t support these well-intentioned phrases with an understanding of what it will take to make person-centred care a reality.
And yes, I realise that it’s not an implementation plan, and that the plan does, thankfully, give repeated commitment to delivering the NHS Comprehensive Model of Personalised Care. But the language that the LTP is written in doesn’t acknowledge the power shift and culture shift needed to effectively implement that personalised care model.
Chapter 1 commits to enabling people to have more control over their health and more personalised care as one of the five major changes but, with the exception of cancer, this commitment isn’t reinforced in the numerous condition specific sections that follow. And in the cancer section it asserts the commitment weakly, to say the least…
By 2021, where appropriate, every person diagnosed with cancer will have access to personalised care…
I honestly can’t think of a single situation when personalised care wouldn’t be appropriate.
Where end of life is scantly mentioned, yet again we see place of death being used as an inadequate proxy measurement for personalised care.
The people we support have widely differing views about their priorities for treatment and care at the end of life. We found that, when asked what was most important to them at the end of life, people are twice as likely to say ‘being involved in decisions about my care’ than ‘dying at home’.
We know through our services and research that, at the end of life, healthcare professionals make people aware of decisions that need to be made about their care, but don’t necessarily involve them in the decision-making process.
We hear first-hand how, often, healthcare professionals don’t view the person they are supporting as an equal partner, much less a leader, in directing and making decisions about their health and care.
“My first treatment drug produced terrible side effects that put me in hospital for three weeks and took six months to recover from. I wish I had known enough to put my foot down and insist that my then oncologist either reduced the dose or changed the medication. At the time I was new to all of it and could have done with a source of informed support in achieving this.”
And this is the crux of it — for care to truly be personalised and shared decision-making be the norm power needs to be shared, and this shift in power requires a massive shift in thinking from many in the medical profession.
But the LTP doesn’t demonstrate a commitment to drive this culture shift. The section on leadership doesn’t acknowledge at all that people themselves can and should be leaders, which makes the mentions of personalised care feel like an afterthought.
There’s a whole section on empowerment — brilliant — but it only refers to enabling access to digital records. Not so brilliant. What about empowering people to have conversations, to ask questions, make the decisions that are right for them?
At Compassion in Dying we are trying to do our bit to move things forward by taking a more bottom-up approach, equipping people with the skills and tools needed to get the most out of consultations, to ask the questions that will enable them to make decisions that are right for them when faced with a life-changing diagnosis. The difference this makes to people is massive. When power is shared and people are able to make informed decisions at the end of life it has a profound impact on people’s quality of life and death.
“The doctors gave us the information on treatments but my husband decided. I believe that his death, although far from easy, was easier than it would have been if he had accepted all the treatments that were offered. He had more control, he could consider what he wanted and didn’t want, and was able to stay at home, with his friends and family around him because of this. He made the rights decisions for him.”
“It makes living easier. It’s liberating. It is good to have discussed these important things… Having all these decisions made saves a lot of worry.”
So, I do applaud the intention of the Long Term Plan in its inclusion of personalised care. But by adding the word ‘personalised’ into the odd sentence it doesn’t mean that change will happen.
It’s going to be a long road and I’m not convinced NHS England has yet grasped the enormity of the culture shift that is needed to make this a reality.
So, sadly, it doesn’t yet feel like a step in the right direction. All eyes now rest on the forthcoming action plan for the Comprehensive Model of Personalised Care…