by Linda Hutchinson |
It was Lynn who first suggested it. “You see” she said “you can cope with the frustration if you accept that patient centred care will come, just not in our lifetime.”
Lynn was the hospital’s PALS manager and had an office near to mine. She would pop in to offload after she had spoken with one of my clinical colleagues and hit the same stone wall of disinterest, defensiveness or worse that the patients had hit and had led to them contacting her.
We would despair together about the lack of insight some staff had to what it was like to be a patient, that ‘patients’ were people until they entered the hospital, clinic or surgery door, that they are individuals with different hopes, fears and ways of getting by in the world. Not knowing how to navigate a complex institution like a hospital was often the root cause of the query; that they just needed some simple questions answered or some thought given in advance to the information they would likely need. Mulling over what it could be like and that there were glimmers of good practice sometimes, we came up with the idea that if we lowered our own expectations then, paradoxically, we would not lose hope. Maybe we should not have done and should have shouted louder for change, demanded it sooner.
This was about 12 years ago now and there is no question that things have moved on. I am tentatively starting to consider raising those expectations. Maybe it is an illusion in that I am working with people from social care and mental health where the spirit of personalised care and individuals as assets not problems is much stronger and has been around longer. Even in health circles though there seems to be a gear change. At policy level, there is the National Voices narrative, now endorsed by so many national organisations. Although under the banner of integrated care, it is the personalised care elements that stand out. Last year’s NHS England guidance on participation was helpful and the planning guidance gives further prominence to participation and empowerment.
We all know however that worthy policy documents are not enough as Paul Hodgkin and Jeremy Taylor wrote about in the BMJ – Power to the people: what will bring about the patient centred revolution? Fortunately there are good signs at local level. There are increasing numbers of examples of respecting patients as people and, dare I say it, customers to be served. Some are strongly asset based and actively seek to shift the power balance, recognising that people who use our services are often much more capable than our paternalism lets us to believe.
It is this paternalism that needs to change; in the hearts, minds and actions of all us working in the sector. We may be more expert in the disease process, its treatment and prognosis, but people are more expert in ‘them’. People can and do cope with having one, two or more long term conditions. People can and do make day to day decisions about their care. People can and do undertake care activities and procedures for themselves or those they care for.
One of the reasons I am wary about the word ‘vulnerable’ is that it is over used. Of course I understand that people can be incapacitated by illness or injury and that people under stress for whatever reason are more likely to make poor choices. We just have to be careful that ‘poor choice’ is not code for ‘a choice I would not have made’. Or that the ‘poor choice’ was made because we didn’t give necessary information in the right way at the right time.
The use of social media (check out Social Media in the NHS @nhssm) changes the dynamic too. Today you can get the advice you need from someone in a different country real time. Apps to enable a completely different service offer will be available soon if not already. As Ian Wacogne wrote recently in Archives Disease in Childhood “we think emailing a patient is revolutionary yet the next generation think it is an outdated mode of communication.”
I haven’t seen Lynn since I moved roles. I’d like to compare notes with her and see if she shares my new found optimism that maybe, just maybe, we will see real person centred care as the norm, not the exception, in our lifetime.