Listening

Category: CQCA public meeting in Cheltenham on October 26th provided an opportunity for representatives from the Care Quality Commission (CQC) to listen to people’s views and experiences of the 2gether NHS Foundation Trust.

The “listening event” came at the start of a week-long inspection of the Trust by a 60-strong (some say 80-strong) inspection team.

It was one of two such events held on consecutive evenings, one in Cheltenham and the other in Gloucester—within walking distance (7 miles) of each other, even though the Trust’s operations stretch from, say, Cirencester in Gloucestershire to Leominster in Herefordshire.

The events were arranged at short notice without widespread publicity. It seems that listening events are rare in inspections of mental health trusts. I don’t think I remember any in the inspection in Worcestershire at the start of the year, for example.

The reason the CQC decided to run listening events this time was probably, as far as anyone can tell where the CQC is concerned, because there were similar events for the recent inspection of the hospitals trust in Gloucestershire, and some people complained when it didn’t seem that there were going to be any for mental health.

Not many people turned up, which was fortunate because the room was small. And several of the people who turned up were people I knew. But there were enough people I didn’t know, with fresh stories to tell, to make it interesting to go along.

The Trust’s Deputy Chair turned up, resulting in some discussion about whether her presence was proper. At one point she was asked to leave the room for a while. Personally, I didn’t think her presence was improper, as it was a public meeting and she’s a member of the public as much as anyone else. She didn’t participate in the meeting as a member of the public, though. Even when the discussion turned to something she knows quite a lot about (the Trust’s complaints system) and I asked her a direct question about the facts of the matter, she refused to answer. It will be easy enough for the CQC inspectors to determine the facts for themselves.

This was pretty typical of the Trust’s leadership culture, it seemed to me. First, the Trust creates a vague feeling of mistrust by behaving in a slightly strange but not exactly improper way. Then, when the mistrust becomes evident and there’s an opportunity to correct it by being more open, the cultural norm is to make things worse by refusing to engage.

Another governor and I were in a slightly similar position, in that we were there as members of the public but with roles in the governance of the Trust, too. We both participated in the discussion.

It was always a possibility that someone attending an event of this kind might become very upset, either while describing their own situation or while hearing about someone else’s, but there didn’t seem to be any explicit provision for that. It would have been OK, as it happened, because there were people in the room who could have dealt with any situation of that sort that might have arisen, but there didn’t seem to be a plan and there was no announcement about emotional safety at the start.

CQC

Someone from the CQC ran the meeting, but inexpertly, as if he was unused to listening events or even chairing meetings. He didn’t “own the room”. For example, near the end when someone quietly spoken was telling her story and people at the other end of the table started having their own conversation, he didn’t intervene to protect the speaker. She capably handled the situation herself, as it happened.

Someone else from the CQC took notes on a laptop. Near the start, after the discussion had already started and she had been typing for a while, she suddenly interrupted proceedings to ask whether everyone felt it was OK for her to take notes. Everyone felt OK.

But then I asked her whether she had captured the point she had interrupted, and to read out what she’d written about it. She hadn’t captured the point. She had reinterpreted it in  a general way, omitting the specifics of what had been said. I made a bit of a fuss, insisting that what people say needs to be recorded accurately if it’s to be recorded at all, and I made sure her notes got that particular point right, but how accurate the rest of the notes will be is hard to predict.

It’s not my intention here to duplicate the CQC’s notes or to provide a comprehensive report, although I did write some things down in my notebook, everyone could see me doing it, and no one remarked on it.

The person running the meeting seemed strangely reluctant to participate fully, in an odd way that I can’t explain. For example, someone asked what the CQC is (which he hadn’t explained), wondering whether these inspections are really just the Department of Health inspecting itself in a roundabout way. He seemed confused by this. I tried to help by pointing out that the Trust is a legally separate body operating under contract and independent of the Department of Health. Surely that’s widely known in the CQC.

At another point the question of whether CQC inspectors would speak directly to patients came up, and he seemed strangely reluctant to admit that they do. The question had to be asked three times before he would answer it. It’s uncontroversial that CQC inspectors speak to patients.

The more troubling issue is whether CQC inspectors will speak to mentally ill non-patients: the people on waiting lists, the people never referred because the waiting lists are so long, and the people given a little treatment and then discharged before they’ve recovered. I suspect that these people, the ones most badly let down, aren’t ever listened to, although it would be good to be proved wrong.

The person running the meeting did mention governance at one point, but I didn’t catch exactly what he said and there wasn’t any discussion about governance as such. The CQC inspectors haven’t asked to meet governors, so it doesn’t seem that they’re very interested in matters of governance, leadership or public engagement.

Stories

Several people brought stories of inadequate healthcare to the meeting, and I’ll not retell them. I’m aware of having become blasé about these things. I’ve heard about how the system goes wrong so many times, and I’ve experienced it myself. It’s easy for anyone who hasn’t experienced it recently to forget that coping with severe mental illness, whether it’s your own illness or someone else’s, is a living nightmare. It can go on and on for years. It can end in tragedy.

I think it’s both heartening and humbling that people came along to the event and described their own experience of the living nightmare. I hope it sank in. The CQC people will go back to dry meetings about processes, checklists and statistical indicators. It will be very easy, and very comfortable, for them to forget what it can mean to ordinary people when the living nightmare strikes and the system fails them.

Not all the stories were of failure. One was of good support for someone with dementia (although someone else immediately responded with a counter-example), and another was of good work done by the recovery college (at least, I think that’s what was meant). Interestingly, neither of these stories was about effective treatment for treatable illness. It seems to be a theme that the Trust is quite good at supporting people to remain ill. That’s OK for incurable illness. It’s not OK for illnesses that have effective treatment. Learning disability never came up.

I was surprised how many people said they had turned to the private sector for effective treatment or to manage their condition. A proper evaluation of how well any trust is meeting the healthcare needs of the population it serves should really take into account how much of the workload is being passed off to the private sector, and indeed the third sector. I’m not aware that the CQC attempts this.

Wider issues

Some wider issues also came up.

Borderline personality disorder was mentioned in passing, and this is one area where the Trust hasn’t implemented national guidelines for treatment. In Cheltenham a charity (which wasn’t originally created for personality disorders) is responding to some of the unmet need, and in Gloucester a private company has set up as a specialist provider for personality disorder just a mile and a half from the Trust’s headquarters.

I mentioned eating disorders as another example. Commissioners in Gloucestershire have only recently admitted the need for evidence-based treatment, as far as I’m aware, which explains some of the stories I’ve heard in the past about the Trust’s eating disorders services.

Several people had experience of lax supervision of at-risk patients in the Trust’s hospital wards. Someone contrasted this with the excellent supervision experienced in a private sector psychiatric hospital.

Someone mentioned the Trust’s involvement in the work of charities, and someone else noted that the Trust uses unpaid volunteers to work with patients. I didn’t fully understand these points, though, so I don’t know what to say about them. It could be that the Trust is blurring the line between professional NHS care and volunteer support, and if that is really the case it might be important for the CQC inspectors to understand whether resources are being used safely, wisely and transparently in these areas.

More than one person had things to say about the complaints system. I pointed out that staff report thousands of patient safety incidents a year, so that a complaints system which only upholds a few dozen a year obviously isn’t providing a clear picture of what’s really going on.

The Trust was praised at one point for allowing some limited participation by members of the public who attend Board meetings, which is unusual in the NHS. I pointed out that hardly anyone attends Board meetings (nor, indeed, meetings of the Council of Governors). But the same person criticised the Trust for failing to provide talks on topics of interest to the public, and I disagreed with that, too, pointing out that there’s a programme of talks. We agreed that it had taken years to persuade the Trust to do it, though.

All in all there was quite a lot of criticism of the Trust, although that’s what you would expect from a meeting like this, and the Trust might deflect some of the criticism in the direction of commissioners. The few people who attended had time to have their say, but they didn’t always get much of a response from the CQC in terms of how the things that were being said fit in to the inspection process.

Just occasionally there was confirmation that something would be looked into—patients escaping from hospital wards, and Gloucestershire’s relatively high suicide rate were examples. Quite often there was no clear response—for example, when waiting lists and complaints were mentioned. A slightly more structured approach to running the meeting might have helped. Perhaps if CQC inspectors run more of these events in relation to mental health they’ll get better at them. For the current inspection the information they’ve obtained will be limited, but I think it was good that they agreed to run them.

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About Rod

Chairman of the Gloucestershire charity Suicide Crisis, Vice Chair of Relate Gloucestershire & Swindon, and an enthusiast for public involvement in the NHS.
This entry was posted in Care Quality Commission. Bookmark the permalink.

5 Responses to Listening

  1. georgewebb70 says:

    Hi Rod My trust was inspected several months ago. We, the governors,met with the CQC. I also attended the summit meeting on behalf of the governors but only after passing a motion at a governor meeting.hope this is of use.

  2. Joy H says:

    Hi Rod. The issue of the safety and wellbeing of the participants in the listening event is an important one. It can be far more affecting to talk about and re-live difficult experiences of services than a person might anticipate. I was far more upset and affected by talking about my experiences than I ever expected to be. It is still acutely painful to re-live some of those experiences.

    A concern at the event was the revelation that the 2gether NHS Foundation Trust will give a list of patients’ phone numbers to the inspectors, and the inspectors will randomly phone some of them to get their opinions on the service which they have received. However, 2gether has still selected the patients on the list. It is not really a random selection of patients. Theoretically 2gether could select patients who they know are very satisfied with their services, and omit those who are less satisfied.

    There didn’t appear to be any reference to patients who had emailed their experiences to the CQC and whether much consideration was given to them. Do they phone them and discuss their experiences? I think this is important because hearing a person’s experiences can be very powerful – and memorable. That’s why listening events are important, despite being potentially distressing for those of us who participate in them. This event was arranged with only a week’s notice, sadly. I think more notice would have allowed greater numbers of people to attend.

  3. Anon says:

    Thank you for your interesting report and your commitment to public invovlement.

    On the subject of eating disorders I can’t accept your reflection that the commissioners’ interest in evidence-based treatment is recent. The commissioners of the service (in their various forms and under their various titles, how anyone ever keeps up with the constant rearranging of the deckchairs on the good ship NHS is beyond me) have been looking to provide evidence-based care ever since their initial decision to commission a service in 1996.

    • Rod says:

      Ah, I wasn’t aware of that. I haven’t been involved with the NHS for that long. I only know that in 2010, around the time I started to get involved, commissioners had a plan for a specialist eating disorders service in Gloucestershire to be available by March 2011. And now they have a plan for it to provide evidence-based treatment from next year (if memory serves). You’re right — I have no reason to assume what their real intentions may have been ever since 1996.

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