Personal Reflections on The Future of Health

The two days I spent at Future of Health (and the following few days recovering) have been the hardest, busiest, most challenging, intense, overwhelming and exciting couple of days I have ever had.

Let me explain...

NHS England and UCL Partners were hosting the Future of Health conference to discuss long term health conditions. I wasn't party to the conversations that the organising committee were having, but I gather that some persuasion from a few people convinced them that discussing long term health conditions without the very people affected by them present was futile. Hats off to those who sowed the seeds on the inside and I must say a brave move by NHS England too in accepting this challenge! So the idea of a People's Panel was born. And it was brought to life by the organising committee, but still without anyone living with a long term health condition actually involved yet...

Having somehow been asked to be the spokesperson, I was included in a few more emails re the details in the week or two leading up to the conference. But being cc'ed into emails is not the same as being involved. I had to ask to have a quick read of the document outlining our role that would be sent to everyone on the Panel to add my two-penny's worth.

Anyway, Thursday arrived and we all met up - the most passionate and inspiring group of people I have ever met! I was completely telling the truth in my final closing plenary when I referred to them as colleagues and friends. Working alongside them was truly humbling. Trying do justice to their points, and get them across as articulately and eloquently as they had said them for the final closing plenary was the most enormous challenge.














From the overwhelming response on Twitter, documented in this Storify, it is clear that the People's Panel and Jonothan Hope's outstanding opening plenary set the tone of the talks and grounded it in the reality of people's lives. Jackie Ashleys great write-up of the event in the Guardian (NHS England is finally taking expert advice - from the patients) summed it up very well. 

I know that conferences are always busy, but we were rushed off our feet... not an environment that is particularly conducive to self-managing. There has been an enormous physical cost to every single member of the panel. We were all experienced self-managers, so why did we all end up in such a state at the end? I can't speak on behalf of everyone else, but for me, I believed in what we were trying to do and wanted to make it work. That passion and drive that I could feel so strongly (it was spine-tinglingly strong!) overrides sensible self-management sometimes! But, also, as I have suggested in a previous post, there is no self in self-management. We need the right environment and support to self-manage, and there wasn't really enough of that at Future of Health as there could have been. 

I felt empowered because I felt that we were an integral part of the conference and the conversations. I felt empowered by the pledges that were made by Dr Martin McShane and Professor Peter Fonagy, and empowered that we can hold them to account! But I felt dis-empowered because the practicalities of the day weren't designed with us in mind, and there was little we could do about that on the day.

Despite these challenges, the fact that the People's Panel was a group meant that we were kind of an informal support network over the few days - something I valued, but something I am aware wasn't accessible to other patients and service users who were also attending as speakers or delegates. I hope that next time things can be more inclusive for everyone involved in the conference in whatever capacity. 

So, I can't deny that we were involved in the conference and the conversation. We were. So NHS England can rightly say that they involved people with LTCs in this conference. But they can't say that this conference was co-produced. That may seem like a subtle difference to them, but to us, it is massive. It's a principle that applies beyond just this conference, but to the challenges we face in managing LTCs in the future.

Reactions to the point above have varied greatly, and this is where I am really struggling. I think I am generally an optimist. I always prefer to congratulate what has been achieved and then to highlight the areas for improvement, rather than look at what could have been right away. Perhaps I am naive, but I don't expect NHS England to get this right first time, and I know this change isn't going to happen overnight. I'm relatively new to this (really only a year and a half...), so I don't want to sound disrespectful to people who have been doing this for years, and have heard all this rhetoric before, but I am hopeful these improvements will come.

What I am also aware of is my potential bias here - a fair amount of blood sweat and tears (lots of the latter!) went into this event - so perhaps I am too involved on a personal level to look at this objectively? But the whole agenda of long term health conditions is personal for all of us living with them?!

The crux of the issue for me me is how do we respond to NHS England and what tone does that dialogue have? I personally prefer the approach of encouragement - what they did was good in terms of involvement and that needs acknowledging. I think this was a big step out of their comfort zone, and they need to be supported (just as we need to be!) and congratulated. I think the balance lies in following that with appropriate "next steps" and "actions" to proceed to the next stage of co-designing and co-producing the conference, not lingering on the congratulations too long, thinking that box is ticked. I said in the opening plenary that as the People's Panel we wanted to embody the principles that we are talking about in terms of partnership. I hope to continue to embody those principles and this where the challenge lies - how can we be a critical friend? I am grateful to NHS England for this opportunity to be part of Future of Health but that gratitude and acknowledgement and excitement needs to be followed by working together to improve and go the next step to co-design. In what shape or form can 'constructive criticism' have in this dialogue? I know I may sounds like I am being ridiculously diplomatic here, but the truth is, from my perspective, I did think the conference was a success and an excellent start. Lets take a second to acknowledge that before the really hard work starts on implementing this and improving it.

To me, it feels like we have been at the start of something really exciting - but it is just the start. There is a lot of learning for everyone. Learning that I know, having met the people at UCL Partners and NHS England, can be done collaboratively with us.

UPDATE: The videos from the Future of Health event are now available here, so you can see the Peoples Panel in action!