Last week I published Delia’s ‘Patient Experience’ blog – which I have since dubbed ‘Tales from a hospital bed’. It instantly became one of the most popular guest blogs in our ‘in my shoes’ series. I would strongly recommend that anyone interested in the transformation of our health services grabs a coffee and sits down to read it because it is wall-to-wall common sense.
Was this because it was written by an eminent professional? No – it was because it was written by a person who has, in various capacities, seen more than enough life on a hospital ward to be eminently qualified to commentate. The number of perspectives Delia offers is like a whole Whose Shoes?® session rolled into one person!
There was a vein of humour running through Delia’s post but actually the irony of a 61 year-old widow ‘having’ to be asked whether she was taking the contraceptive pill beggars belief. ( “I’m sorry, I have to ask.”) It undermines the intelligence of staff and patient and, as well as wasting time, erects a barrier between them. At best it joins them in a collusion of shared hopelessness as they navigate an amorphous system that imposes such impenetrable practices.
” No, you do not! You cross it off or write N/A!” says Delia.
Another ‘patient experience’ blog that I enjoyed this week was by Chris Bolton who tweets as @whatsthepont. Here are his (sharp!) observations from A&E when he had a mishap with a fishbone. As more and more people have Smart phones, Chris suggests “Why not use people with time on their hands as a Human Sensor Network to help you ‘listen’ and gather opinion?”. He is talking specifically about A&E, but I think it would be revealing for out-patients and in-patients too, building on the great work of Patient Opinion and Care Opinion and schemes such as KindaMagic.
So it was against this backdrop that I attended a meeting I had been looking forward to in London last week.
Specifically, I had just collected my best friend from hospital, very unwell after four days on a ward after an acute admission but desperate to get home. I had listened to her similar tales of the good (and there is plenty) the bad and the ugly of unplanned hospitalisation. I am hoping she will write a blog at some point because again the learning is immediate and obvious.
The meeting was at NHS England in London, chaired by Neil Churchill, Director of Patient Experience. It was great to meet, or meet again, many of the ‘good and the great’ of the NHS / NHS Improving Quality world. I’ll leave it to others to share the purpose and the outcomes – but I just wanted to give a taste of my personal contribution and a few reflections.
I was honoured to be invited – as were, no doubt, the few other ‘external’ people, all innovators and creative thinkers in the health care world. I’d like to think that we added valuable new ‘perspectives’ and indeed a little extra energy and challenge – I think this will inevitably be the case as a more collaborative culture develops.
I was very interested to learn more about all of the excellent ‘legacy’ work that the NHS, Improving Quality had collated and reviewed; 56 examples of good practice and tools from the various innovation and improvement bodies that had existed in the old NHS Improvement structure. ‘Making patient experience everybody’s business’ was the strapline that Sheelagh Machin used to conclude – and it sums up the current mission.
In addition, the meeting was keen to ‘map’ other (external) successful approaches and resources. As the creator of Whose Shoes?® – Making It Real , which is built on the direct experiences of real people, I realised just how hard it is for ‘the system’ (particularly, perhaps, national people) to know the wealth of fab material ‘out there’ and equally for us – the (often small) innovators – to come onto the radar. The buzz word seems to be ‘spread,’ so please help to spread the word and flag up good practice wherever you go!
I think the clear message on both sides is that this needs to happen quickly and that good ideas are not in short supply! I have a dream that one day we will use all the assets available, in particular the people! When you think about it, ‘us and them’ in health care is completely ridiculous as we are all ‘patients’ sometimes. Indeed no-one is immune from a quirk of fate whereby lives are shattered through accident or serious illness and the tables are dramatically turned.
It seems that the subtleties of ‘patient experience’ are now being recognised – one size never has and never will fit all. People with the same condition or disease have a totally individual response to it and different circumstances in which to deal with it. Compassion is so much more than just working to a script – I have written before about my own personal reaction to ‘Little Miss Side Effects’ and also the unfathomable, confrontational Continuing Health Care System.
Similarly, and something that has struck me time and time again through my work with Think Local, Act Personal, it is often said that people want more information. Generally, they don’t – they want information that is local, relevant and tailored to their particular requirements. I remember when my father had repeated heart attacks, we were always offered a huge pile of (the same) booklets. However, it was knowing that he had Lillian (name NOT changed because she was brilliant) at the end of a phone that kept Dad going. He never called Lillian; he just felt reassured that she was there.
A fleeting question. Should ‘Domain 4’ (Patient Experience) be a separate domain or should it in fact be integral to everything else? Hmm, this reminded me of one of my earliest Whose Shoes? customers / champions – Ali Gardner, Senior Lecturer at Manchester Metropolitan University. Ali had had exactly the same qualms when she set up a new ‘personalisation module’ (the first in the country, I believe). Again personalisation should indeed run through everything, like writing through a stick of rock, but actually it needs some special attention to change attitudes in the short term.
Small can indeed be beautiful: I mentioned some of the fantastic small projects I am involved with – the EDUCATErs in the North West, where people with dementia are directly involved in training and policy making; Grapevine, local to me in Coventry, who literally enable young people with learning disabilities to have ‘a life rather than a set of services’ (the theme for one of my original Whose Shoes? cards) and so many others.
I quoted a couple of the anecdotes my friend had told me. The lady in the bed next to her clearly had dementia and was groaning that she needed her tablets for pain relief “my tablets, my tablets!”. The nurse informed her that she was having intra-venous pain relief – clearly speaking a different language and offering zero comfort. It reminded me of my husband painstakingly writing out washing machine instructions for his mother; sadly logic is not likely to be the answer when caring for someone living with dementia. I asked if this lady could perhaps have been given a placebo – but no doubt there would have been a risk of choking and all manner of health and safety concerns. So meanwhile she continued to be upset, to disturb the whole ward and to take staff time in ‘administering’ and rationalising … rather than engaging with her as a human being.
Meanwhile, a couple of days later, some of the Patient Leaders that I most admire were making hay at the ‘Future of Health’ conference. You can look at the #FutureofHealth hashtag but the inspirational Anya De Iongh has pulled the key tweets together in a brilliant Storify.
Anya has also subsequently written a great blog and, although incredibly diplomatic, she hints at some of the tensions that are already arising / likely to arise as the Patient Experience movement gathers momentum. It struck me that I can see these almost as clearly as I could see the likely course of personalisation when I first developed Whose Shoes? – but that will have to be the subject for a future blog. Suffice to say that the tensions are potentially very similar but I believe that lessons have been learned and people are becoming far more aware of the requirements of genuine co-production.
I would have loved to see Anya’s talk; equally I was there in spirit encouraging Alison Cameron who had been invited to co-present a fringe workshop. They missed a trick here – Alison will be a keynote speaker before long! 🙂 I had the privilege of publishing some of Alison’s truly amazing story as a 2-part guest blog.
There is SO much to learn from the Future of Health conference – the Guardian have written a great piece about it here. It feels like a turning point. Co-producing the whole event from beginning to end is the key lesson – because, actually … that is how real co-production is meant to be!
I don’t know the Patient Leaders well but well enough to know that the event will have taken a huge toll on some (all?) of them – mentally, physically and emotionally. It can be tiring enough for any of us to attend a conference such as this; all the more so for people with long-term conditions. This is especially true when good people are passionate and want to make the most of every moment – and then inevitably pay heavily for it afterwards. We are currently a long way away from properly valuing these invaluable contributions.
The ‘Patients’ Panel’ was a very brave and laudable initiative on the part of the organisers, NHS England and UCL Partners – inviting people to judge proceedings as they unfolded and whether they were truly person-centred. Again the energy and excitement is palpable as panel members, who traditionally have not had much of a voice, suddenly take a lead role, if not exactly centre stage. The Simon Cowell approach to health and social care?
As the adrenalin flowed, there were some rallying calls, some big claims and some specific pledges:
The People’s Panel are featured on the #Purple page on my new Pinterest boards! Have I told you about those? 😉
As for me, I have some exciting times coming up. I am off to Malta today for the 23rd European Alzheimer conference – follow us at #23AEC. Shahana Ramsden and I are co-facilitating a Whose Shoes? workshop, sharing some of the TLAP ‘Making It Real’ story and working directly with people from the European working Group of people living with dementia. We have had numerous, friendly email exchanges. The group members are a lovely bunch and I am very much looking forward to exploring issues with them, using key messages developed with my wonderful Australian friend, Kate Swaffer who has put me in touch with them. This whole experience – not just the workshop but spending several days networking and learning – is a wonderful opportunity to ‘Make It Real.’ I feel incredibly fortunate to have this chance to raise awareness and help delegates ‘walk in the shoes’ of the real experts! Wish us luck! 🙂Huge thanks to Andrew Coulson (@andrewecoulson) for setting up the fab Whose Shoes? Pinterest boards, which I am really enjoying adding to as I spot good stuff or have news to share. Andrew worked like a pixie in the night developing them – probably because he is in Australia and they sleep at strange times Down Under. 😉