11 – Logging and listening to real voices about what happens next.

Over the last few weeks I’ve been talking about how we need to learn the lessons from Covid. In most of these posts, whatever the issue, I’ve talked about how we need to make persuasive arguments for change. And on many occasions those arguments need to be based upon the voices of people with direct experience.

Over the next few months both the NHS and social care will be planning for the recovery of many services, all of which will have to adapt to the new semi-infectious world that will surround us. So will people who experience those services be listened to in that round of planning?? At the moment the question marks are my main response to the question. Maybe, but possibly not.

I understand that there has always been a strong moral argument for listening to people who have experience of services that are being planned for them. It seems (and is) wrong to plan around them and not with them. But that moral argument hasn’t stopped most planning for health and social care services from taking place without the loud voices of the people who experience them.

I’m afraid – even in services driven by morality like the NHS and social care – that the moral argument seems not to make as much impact as it should.

There is however a material argument for involving the experienced public in planning services. It’s a simple matter. If you don’t take people’s experience into account you really get it wrong. Failing to involve the real lives of real people inevitably leads to wasting a great deal of very scarce resources.

Planners just don’t know what they just don’t know. They develop things which – from the public’s point of view – are just weird. Some resigned members of the public can (because they have to) work around that weirdness. Others find it so weird they are put off and stop using the service. They get more ill and come back as emergencies.

So here we are in the new Covid crisis that has changed the care of millions of people. It was understandable in February and March that a lot of policy was made in a great hurry. Time and viruses wait for no one. It had to be a rush.

But some of that urgency will continue for some time (he says – having not gone out for 9 weeks) and will become the ‘new normal’. Why not return to planning for this and get people’s experiences of what has gone on and what will continue for quite a while? Let’s use this time to listen and plan.

The same is true for all the effort currently going into recovery programmes. Planning for the next 18 months will be crucial to deal with the backlog of treatment. We have heard a lot about the cancer backlog and its costs. What about the many people who have been managing their diabetes, arthritis, endometriosis or psychosis on their own? Most will be absolutely fine, a few will be in a very bad way.

Last week I talked about the necessity to triage those with very different mental health needs.

If triage is undertaken without taking account of the real experiences of the people themselves, grave mistakes will be made. It’s pretty obvious that if we fail to do this  we will waste many of the scarce resources we have.

Luckily National Voices have thought of that.

Long-time readers of the blog will remember that I have often recommended the work of National Voices. Especially their ground breaking work in creating – from patient experience – the ‘I’ statements about public requirements from integration.

In all my work with service integration, I have always found these statements (for example, “I would like to tell my story once”) helpful in making change.   Whilst the services themselves needed to integrate, the public needed those services to coordinate around them. It was not just the voice of the public, but it was immensely helpful in bringing about change.

During this crisis National Voices are working to log real people’s experiences of real services today. (Their website can be found by following this link). And it’s very easy to record what you have experienced.

There will be many lessons to learn.The website is for adding your own.

But (among many others) there are two immediate issues that I think need noting.

Looking ahead to coping with the virus I think – until we have a vaccine – that it’s very likely that we will be experiencing shielding for some time to come. If the experience of shielding becomes intolerable, resulting in the extremely vulnerable going back to their past lives, the likely outcome is that the number of people dying will increase.

So we need shielding to work and work well for quite a time.  What has made it easier? What can NHS and social care services do to make it more sustainable? Has the volunteers system helped? How could it help better?  What can we do to help shielders and other carers use more technology?

These are all issues we need to address if shielding is to become a long-term viable experience.

The same is true with the use of digital technology to deliver services. I have already written about how it has transformed the location where primary care takes place with much more now taking place in the home. Who has found this better? Who has found this hard? How can people who have learnt how to do this help others who find it hard? How realistic is it for the NHS to use its power to buy a few hundred thousand tablets to transform people’s lives and prescribe them in the same way as it does medicine?

By and large recovery policy is being made in these areas without sight of what would really work for the public and what would not. Let’s change that.

Come on, you have a voice! National Voices are giving you the opportunity to use it to help others.

Why not do it now?