Neil Tester, Director of Policy and Communications, Healthwatch England, shares lessons learnt from listening to patient stories and discusses improving discharges from hospital in Oxfordshire.
This presentation was recorded at our event, Better transfers of care for older people, on 21 February 2017.
Thank you Richard and good morning everybody. And before I start I think on behalf of my colleagues Rosalind, Imelda from Healthwatch England. And also I know there are a number of other local Healthwatch in the room. I think we would like to channel to you the thanks from the 3200 people who spoke to us about their and their relatives’ experiences of discharge with the fact that you have chosen to give up your day to help to make this better. So I hope you will go away with some really practical ways of doing that as a result of the day. Just to say to clarify this first slide, a picture on the front of The Telegraph, that is not an elderly gentleman being moved in a slightly distressed state from one care setting to another and having his personal budget thrown at him, we happened to launch the result the day after Sepp Blatter got pranked during the height of the FIFA scandals so the point it’s the headline rather than the photo.
So briefly for any of you who don’t know very much about the Healthwatch network, we at Healthwatch England support and lead a network of 152 local Healthwatch who are commissioned by top tier local authorities in England. Together the network has 900 staff but critically could not operate without 6,000 brilliant volunteers who absolutely root us in the communities that we serve. And together the network has 300,000 face to face interactions a year with people about their experiences of health and social care, gathers insight from half a million people including digital and other ways of collecting that experience, and it’s a really important principle for us that we are here to amplify seldom heard voices across health and social care. And we’re here to be partners for improvement based on people’s real needs and experiences. And that was fundamental to the way that we approached looking at discharge in the special enquiry that led to our Safely Home report.
So the reason that we looked at discharge was when the network was first established after the 2012 Act, it was one of the priorities, local Healthwatch knew from the local communities, there were huge pressures and a real chance for improvement on the discharge agenda. As you have already heard there is a massive financial cost, but we were really keen as Richard alluded to to address the human cost of discharge and there was not very much known about that at the time. So 101 local Healthwatch got involved in the project and gathered the views of well over 3,000 people, and there were three strands to that enquiry. I will focus today on older people as that’s the thing with this event, but it was very important to Healthwatch that we were also looking at homeless people’s experience and that of people with mental health conditions. And the point of taking that approach was that if we could find indications of how to improve experiences for people that the system found difficult to get the right solutions for, that would by extension make things easier for everybody else as well.
So what did people tell us? I am going to give you the bad news here before we get on to some of the good news. Always important to stress when we share Healthwatch intelligence that most people most of the time tell Healthwatch they have a good experience and we do always do our best to make sure people know about that and build on what’s good. But what we wanted to really get across in the report at the time that we produced it was what was not working well for people and what was their vision of what a good system and a good setup would look like? So people were telling us that they were experiencing unsafe delayed and untimely discharge and that that was being driven by a lack of co-ordination between health, social care and community services. Big gaps around information support after discharge and that that was sometimes leading to unnecessary emergency readmission, and a theme that I have to say was just as strong for older people as it was for homeless people and people with mental health conditions, that people felt discriminated against and stigmatised and sometimes felt rushed out of the door. And that was linked to not feeling involved in decisions about their ongoing care after discharge. And as other speakers this morning have also mentioned, some real challenges around people’s full range of needs, their actual life, what their home circumstances are like, whether or not family were able to provide support perhaps in the way they had done six weeks before, were not always considered when people were being discharged, and particularly important when looking at housing and carer responsibilities.
One of the things that helped our report have the most impact was the number of personal stories that it told, and I wanted to just share two of them with you, because I think that some of these stories were absolutely key to the level of enthusiasm and commitment with which some very senior people across health and care got behind this agenda and started to look at things from a slightly different angle.
So the first story I wanted to share was that of a daughter who contacted us to say the following. She said ‘I rang them shortly after lunch to be told mum had been discharged. I was shocked. She lived alone, she was still delusional. A neighbour rang to say that mum had been brought home by ambulance in her nightgown and left in a cold house after the driver got a key from another neighbour. That elderly neighbour stayed with her all night and she was readmitted the next morning’. So nobody in that story benefitted from what happened. And then a personal testimony from a person we called Evelyn in the report, obviously not her real name. She was a carer for her 85 year old husband who had dementia, and she had to make plans for his care while she was in hospital. And a few days after her operation a student social worker told her ‘Sorry you can’t have a care plan, there just aren’t any carers. I haven’t been able to fix anything up, even for you to pay for, I will keep trying. She had no idea how she was going to cope. Her husband also had Reynaud’s disease, so that affected his hands, there was no way he was going to be able to assist in her care when she got home.
And this is how Evelyn summed up her experience. She said ‘The ambulance drivers left me standing in my kitchen supported by two crutches. I am no wimp but on that afternoon I was devastated, I had not felt so abandoned since my mother died when I was 25. Bossy organising me didn’t know how I was going to cope. Even now several weeks on I find it difficult to talk about it or even write about it without crying’. And that’s the kind of testimony that really did start to galvanise opinion and help prompt some of the really concerted action that we are now fortunately starting to see.
So this is what people told us would make these transitions work better for them. A need to be treated with dignity, compassion and respect, people want their needs and circumstances to be considered as a whole, not just the symptoms they are presented with. They want to be involved in decisions about their treatment and discharge, to move smoothly from hospital onwards to community support, and to be properly informed about where to go for help after discharge. And we tried to have a look at what we could tell from the experiences people shared with us about why this was proving so hard for people to fix. It wasn’t as though people weren’t going to work every day in a range of settings desperately trying to improve this, what was holding it back? So Olivia talked about the complexity, I love that quote about people focusing on things that are complex and sometimes forgetting to have a conversation, absolutely on message from what people told us. There is lots of guidance.
At the time that we wrote the report we found that 120 Trusts we surveyed were using guidance from 57 different documents and tried to piece that together and make some sense of it. And that uneven usage was creating a massive variation in outcomes, and making evaluation of what was working really tricky. But sometimes it is very simple, so those 120 Trusts, nearly all of them had a discharge checklist, fewer than half used that checklist to ask whether somebody had a safe home to go to or basic carer support that they needed when they left.
So the good news is some things happened afterwards. We never try to claim credit for everything, you would not find it credible if we did. I would like to think we can claim some share of a contribution to helping people look at these issues in a different way. And one of the ways that we tried to make that happen was before we published the report we brought together about 30 senior leaders from Department of Health, DCLG, the National Arm’s Length bodies, local government, the mental health world, the housing world, the voluntary sector, got them round a table at Richmond House. And we had shared the report in advance with them, had some conversations with them about how we might pull their plans together to take a different and more concerted focus on this issue. And what really struck me during that session was that people moved straight out of the space they would normally be in in the day job where it was all about plans and targets and programmes and projects and they talked about the people. And they all recognised the experience, people who had been practitioners said ‘I remember that happening when I was a GP, I remember that happening when I was a nurse’. The policymakers said ‘Yes this is exactly what we have got to bring to the forefront’. So did exactly what we wanted there and it led into the thinking that generated the cross government discharge programme which helped to give some real impetus to some of the initiatives like the ESIS work that you are going to hear about today.
We were very pleased, NICE were involved in that process with us, very pleased with the guidance that they and Sky produced afterwards. And it has been a really important role for local Healthwatch which Rosalind will say more about, in following up with commissioners and providers to continue to help drive that improvement. We were also pleased to work with and to bring a number of local Healthwatch together with the team at NHS England who produced the quick guide that was mentioned earlier this morning to ensure that the staff understand how to support patients in understanding their choices when it looks as though it is going to be a care home that they will be discharged to rather than their own home. So do have a look for that quick guide on the NHS England website, you can find it through the link there when the slides are circulated.
I will skate through this bit because you have seen Olivier flashed some of these reports up, but very helpful ombudsman report following ours, really key to build the argument for the issues that will make a real difference to safe, effective and respectful discharge. And then the Parliamentary Administration and Constitutional Affairs Select Committee undertook an enquiry into that report and very helpfully set out the expectations that Parliament has of the Department of Health and NHS England in tackling these issues. And we were able to use our submission to that enquiry to update parliamentarians and policymakers on what local Healthwatch were continuing to find as people started to implement local improvement programmes. So there are some green shoots, we are very glad that you are here today trying to find out how to cultivate them.
So some recent research from Healthwatch Essex that was published in December, so people probably know Essex very challenged health economy, success regime area, and the Trust responsible for three hospitals commissions Healthwatch Essex to undertake a two year very extensive research programme that looked at the experiences of patients and carers and also brought in the views and insights of staff and delivered a mammoth research report that is really worth looking at. I will try and tweak the link later today if I can. Gloucestershire are very shortly to publish the report of their follow up exercise, so they’ve made a commitment annually to revisit this. I am pleased to say that they have discovered evidence of a very productive working relationship emerging between CCG, between Trusts, community Trusts, all of the people that need to be round the table working on this together. But just as importantly they are going to carry on coming back to this issue year after year.
And what all of these bits of research and engagement are saying is that what makes a real difference is not just looking at flow, but looking at the actual people and their real circumstances. And it’s really important if we are going to avoid the risk of becoming so over excited about the speed of discharge that we forget about the quality and safety and the experience of discharge, because that is what drives unplanned readmission, and that helps nobody. One of the things we are really interested in is the potential implementation of what has been built into the new two year set of CQUINs for 2017 to 19, because for the first time we are seeing the system there talking about proactive and safe discharge, so a very, very positive indicator that people are getting the balance right. Can I have a quick show of hands? How many people know about that CQUIN? Excellent. And how many people know whether it has been built into the new contracts for their area? Excellent that has really cheered me up this morning.
And we also think that we need a cultural revolution here. So I know you will hear more today certainly in the breakouts and probably in Plenary about the red to green initiative. We think that kind of approach to putting people’s individual needs first every day, involving them in an assessment of where they are and what they need next to help them move through their discharge journey is exactly the right thing to do and it is the efficient thing to do. So before I hand over to Rosalind, I want to leave you with a question to think about as she explains what has happened in her area, which is at the end of the day, when you go away with lots of good ideas and good practice from this event, what will you and your team do about those experiences that people describe to us?
Neil, thank you.