In mid December 2016 the CQC Deaths Review was published. To coincide I published my own scoping review Family involvement in, and experience of, death investigations by the NHS and I blogged some initial thoughts about it here and some thoughts on potential learning here and here. I promised that I’d blog some thoughts about the experience of working with CQC and these are contained within this post.

Disclaimer: lack of nuance in discussions 

I’ve got into a habit of including disclaimers at the front of my blog posts. I’m not sure whether they’re always necessary but on this occasion I want to front up the issue of lack of nuance in discussions surrounding this area – whether that’s conversations about CQC, regulators more generally, about bereaved families or parents or siblings, about NHS staff – so much of what is discussed is presented in stark tones of black and white, of all or nothing. It’s my belief that the ‘truth’ often lies in the middle, in the murky grey, and I for one am growing weary of such extreme presentations of just one side of a debate/experience/belief, where sweeping statements go unchallenged and an almost extremist agenda closes down any real discussion, debate or chance of developing a shared understanding of multiple perspectives. I offer this blog post as my personal experience, reflections and observations. That’s all they are, my view, they’re not absolute, they almost certainly misunderstand other’s positions or communication, but they are offered for my own record, and others debate and discussion if they wish. I’ve tried to be balanced and nuanced, neither wholly one thing or another, just reflective.

Insider versus outsider

I was a little uneasy about taking a position with the CQC Deaths Review team when I was offered the opportunity to work as Special Advisor on Family and Carer Experience. I’d been working for myself for over 3 years at the time, much of that spent campaigning with JusticeforLB, and I felt distinctly uneasy at becoming (albeit temporarily) part of ‘the system’ and all that went along with that. I had concerns and fears that I would be compromised by the position, that I might not do it well enough, that I was being bought inside for political reasons (perhaps in some small way to keep me quiet).

None of my worst fears really materialised in practice, while I’m not sure whether I did ‘a good enough job’ in some families eyes. The report has had a mixed review from families, however I’ve been heartened by some of the messages I received from family members and I know I did the best that I could, so I’m struggling to see how I could do more than that. At no stage did I feel like I was being censored, or managed, or moderated. Interestingly, aside from when my payslips occasionally arrived, I treated the work much like any other freelance work I do, and I didn’t really feel like I was working within ‘the system’, so much as working alongside others who were. In truth I’m not sure how helpful a distinction, or worse still dichotomy, inside or outside really is. In a way I wonder whether my fears were based on not a lot more than hyperbole. Something I’ll return to I’m sure.

CQC staff

I didn’t know what to expect in relation to staff at CQC. Rarely does a day pass when my twitter stream doesn’t include someone slating CQC and it’s staff. In spite of this a number of individual’s who I value and respect work for CQC, so I think at best I was sceptical, at worst I was dreading what I’d find. I was very pleasantly surprised. As in any organisation, I met at least one person who if I’m honest I have no idea how they hold the position they do (and have some bigger questions about how fit for purpose the communications team and their approaches are), however, the vast majority of people I met or worked alongside were committed, open and interested in doing a good job. Not only were they interested, they actively sought to adapt and adjust the work we were doing to respond to what they heard.

It was an absolute pleasure to work alongside the team brilliantly led by Victoria and Kim working to Mike and Paul. It’s not like every idea was taken on board, far from it, but I did feel like they were at least heard, considered and dismissed. I didn’t feel like my involvement was rubber stamping something or box ticking engagement, and I believe that the final report reflects that in the extent to which it includes family experiences.

Role of an Expert Reference Group 

The report was supported by an Expert Reference Group who met throughout the review process. As ever with these things the first and last meetings were chockablock full with representatives of organisations who wanted to be involved, and I’ve got to say that it’s a shame they didn’t all make every meeting, as I suspect the final review may have been stronger in some areas if they did.

I also question the role of organisations who sit on ERG after ERG, and then criticise the final outputs or products. Surely there’s a question to ask about their involvement. Maybe behind the scenes (unseen to me) they were working incredibly hard to influence the review, but it looked in places that there was a sense that people come along, point out their expertise, and then do very little. Personally I believe that there’s a real role for campaigning organisations, and this ERG was refreshing in that it wasn’t full of the usual suspects, but I’m left uncertain of how having an ERG is a great model for influencing or improving things.

NHS staff 

While I question the fit or to some extent purpose of an ERG, one of the personal benefits for me was to meet some brilliant NHS staff. I’ve never doubted that the NHS includes brilliant staff, indeed when my Dad was ill and dying we met many, many brilliant staff members, but sadly in recent years I’ve heard time and again about experiences of neglectful or poor practice, abuses of power and some awful behaviour by employees of the NHS. Meeting, listening to and talking with Emma and Dan over the course of the ERG meetings filled me with a low level reassurance that has long been absent. My rational brain has always known there is good, but it was good for my heart to be reminded of what my head had buried. Cheesy but true.

Transparency

The first meeting I had with Victoria and Kim I made it clear that I’d feel most comfortable about being involved if my involvement was as close to how I would normally work. That meant I would tweet from meetings and blog about my involvement – without seeking permission or oversight from anyone within CQC. It presented no problems at all (that I’m aware of) and created interest in others who were not involved in the review. It led to one or two suggestions of trusts we should be in contact with, and introduced me to one or two families I didn’t previously know.

As far as I can see the only down side of such transparency is a more general point about raising one’s head above the parapet. The CQC staff members and NEDs who use social media end up receiving a lot of attention and feedback (and criticism), much of which I feel sure is useful to them, some of which feels like people just attacking what/who they can see. While CQC were leading on the Deaths Review, any meaningful change or improvement will not come about without the involvement of the more invisible (on social media at least) NHS Improvement and NHS England. I do wonder about the personal cost, versus overall benefit, of engaging on social media while others continue to hide in the shadows.

Listening and responding 

The first ERG that I tweeted from included the introduction of the strand of work on families and carer involvement in investigations. The initial focus was on how families and carers were involved in investigations, there was a lot fed back that this focus would fail to fully incorporate how this group were treated – something as important to family members, as involvement. The CQC team heard this, and adapted the focus of the review to include how families were treated. The focus of fieldwork visits were adapted, the opportunities for hearing from families widened, and the general understanding of the issue broadened as a result.

This is just one example of how the team adapted their work to reflect family experience as core to the review. The initial draft report was structured around the Key Lines of Enquiry and family and carer treatment and involvement came at the end, looking back over the whole experience of identifying deaths, investigating them, and learning from them. Again, in response to feedback at the ERG, this was revised to ensure family experience was up front in the report, while it was important that it featured throughout, it was felt that the best way to ensure the importance of families and carers was recognised was fronting it up. It also represented a change that is required throughout the NHS if they truly want to get better at this, that families and carers need to be heard and involved right from the start, while someone is receiving care and immediately after they die if an investigation is being considered – not involved at the end, or worse still not involved at all.

Meeting promises and commitments

When the review started the team leading it, Victoria and Kim, received a lot of feedback about how impossible it would be to conduct a review in the timescale they had set. It took six months to agree the terms of reference for the review, leaving seven months to complete it in 2016 (May to December). Almost universally at the first ERG organisations said it was too ambitious, and they’d not manage to collect data, analyse it and report to the Secretary of State in that timescale. Victoria and Kim were confident that they could, if everyone pulled together, and I was entirely committed to that timescale. I don’t see why any piece of work about something as important as this should take longer than this, or to be blunt can afford to take longer, lives are at risk.

I’m sure that there were many occasions when Kim and Victoria wished they working to a different timescale, but they and their team stuck to their promise, and sure enough the report was published on 13 December. I saw at least one conversation where it was suggested that the report was ‘uncontroversial’ if it reported on time, and a further response that suggested it had less meaning if there was no attempt to bury it.

Damned if you do, damned if you don’t but I’m pleased that the Deaths Review Team met their promises and commitments. In no small part because I think they cared, really cared, humanly cared about the work they were doing.

Actually bringing about change 

While I’ve reflected on the process of working on the review, I am not naive and I start this year with a sense of unease. I’m not sure what the next steps for the CQC review will be and I don’t believe any meaningful change will come about without the full involvement of family members and carers. Personally, I think the review is useful as a marker of the current state of practice in relation to death investigations in the NHS, however, that alone is no more useful than any other report (academic, journalistic or policy driven). The value of the work will depend on what next, what form action and improvement takes. For me success will only be secured if 2017 sees a move forward from (re-)stating the problem, into a focus on truly solving it. Time will tell.