A couple of months ago I agreed to be a Special Advisor for the CQC on a thematic review that they are conducting, looking at how the NHS investigates deaths, and how (if?) they learn from these investigations. The decision to take on this role was not an easy one for me. For many months now I’ve been refusing work unless I truly believe it will lead to some improvement or make a difference; this has meant that I’ve not earned a lot, but on the plus side it has allowed more time for campaigning with #JusticeforLB and more time for stitching!

Time will tell whether this thematic review makes the slightest difference, but so far I’ve been impressed with the commitment and the openness of the project team, while somewhat dismayed at the limited scope of the review, and the increeeedddiibbbbblllllly slooooooooow pace of progress. More on that later. I thought I’d do this post as a sort of Q&A, let me know what you think (in the comments here, on twitter, or by email if you’d prefer).

What is the #CQCDeathsReview?

The review is looking at how NHS hospitals find out how and why someone in their care has died. It also wants to figure out whether hospitals are learning from what they find, and whether chances to stop people dying were missed. An important focus within this is how family members and relatives are involved in investigations to identify learning.

At the first Expert Reference Group (ERG) there was a lot of feedback on twitter about how system focused this was, and the limitations of asking how families were involved to identify learning, without understanding (or even bothering to ask) about how they were treated. This feedback was taken on board, the discussion noted and the Key Line of Enquiry altered to reflect this, it is now concerned with how family members and relatives are treated when a loved one dies and how they are involved in investigations.

Why is the review happening?

When Connor Sparrowhawk’s death was initially dismissed by Southern Health as natural causes, his parents started to question whether there was some sort of bias or prejudice at play because Connor had a learning disability. They have relentlessly campaigned to identify what happened to Connor, but also how things can be improved for others. They asked David Nicholson, the then CEO of NHS England, to commission a review to look at other deaths under Southern Health’s care, to identify whether what happened to Connor was a one-off, or whether, as they suspected (and proved to be correct in suspecting) the deaths of those with a learning disability or using mental health services were dismissed and not investigated. This review, conducted by a team from Mazars, became known as the Mazars review.

On the day it was published (17 December 2015) Jeremy Hunt stood up in the Houses of Parliament and said:

The report describes, as I set out to the House on 10^th December (HC Deb, Col 1141-2), a lack of leadership, focus and sufficient time spent in the trust on carefully reporting and investigating unexpected deaths of mental health and learning disability service users. The report found that there had been no effective, systematic management and oversight of the reporting of deaths and the investigations that follow.

I am determined that we learn the lessons of this report, and use it to help build a culture in which failings in care form the basis for learning for organisations and for the system as a whole….

– The Care Quality Commission will also be undertaking a wider review into the investigation of deaths in a sample of all types of NHS trust (acute, mental health and community trusts) in different parts of the country. As part of this review, we will assess whether opportunities for prevention of death have been missed, for example by late diagnosis of physical health problems.

If you had a learning disability and died at Southern Health you had a 1% chance that your death would be investigated. If you were an older person using mental health services you had even less chance, 0.6%. This review is going to find out whether Southern Health are an outlier, or whether their appalling failings (as documented in Mazars) are routine across the country.

Is the review just looking at the deaths of learning disabled people or people using mental health services?

No, the review is looking at how hospitals investigate all deaths. That said, there is a particular focus on the deaths of learning disabled people and people using mental health services, to ensure that any particular learning about how best to support these groups is identified. We know from previous work such as CIPOLD (the Confidential Inquiry into premature deaths of people with learning disabilities) and information gathered by WHO that people with severe mental illness or with a learning disability die earlier than the general population.

Is the review just looking at people who die in hospital?

No. The review is asking about people who die in hospital, or who have been seen by a hospital in the six months prior to their death.

Is the review just looking at NHS hospitals? What about private provision?

This is a real sticking point. The scope of this review, as set by the Secretary of State was NHS provision. This is in spite of the fact that huge chunks of provision, especially learning disability or mental health services, is provided by the private sector. Indeed I read on The Priory’s website the other day that ‘Over 85% of the services provided by the Priory Group of Companies are publicly funded’ – yes really! The same can be said for many of the (alleged) Assessment and Treatment Units that turn into holding bays for learning disabled people.

This limitation (*cough* massive gaping hole) was discussed in the first ERG (and I know had already been discussed by the CQC staff prior to that) and the latest feedback is that the scope will not be changed. While in some way I can understand the desire for a constrained scope, I feel that this oversight will mean anything that comes from this review can only be the starting point for progress.

Surely, there’s no point then?

Personally I feel it’s a real missed opportunity to only look at NHS provision. That said, I think any focus on this is better than none which is why I remain involved. I’m also falling on the side of believing that there is so much to learn, the sooner we make progress, the sooner deaths may be prevented and care may be improved.

What has happened so far?

So far it has taken over six months to get the scope of the review agreed, and officials in the Department of Health to agree to the proposed approach. I’m sure many people will tell me that’s about normal. I think it’s woefully slow, dangerously slow in fact. That said I’ve been impressed with the leadership and commitment shown by the CQC staff responsible for this work (Victoria Bleazard, Kim Forrester and Mike Richards) and their promise to meet the end of the year deadline. I’ve also been impressed by the attention to detail and commitment of the analysts and policy staff I’ve met so far. There is a sense that this work matters, more so than just going through the motions.

What will happen in the review?

The team at CQC have already designed, piloted and distributed a provider survey.

Over the next two months teams are visiting twelve sites across England. During these visits they will interview at least three people at each trust – this will include the person/s responsible for Board oversight (Chief Executive, Medical Director and/or Nurse Director); the governance lead for systems and processes; and the operational leads for identifying, investigating and reporting individual deaths.

A number of approaches are also being developed to engage with families and relatives, this is the area I’m most heavily involved with. I’m painfully aware of how hard some (most?) bereaved relatives have to work to get anyone ‘in the system’ to listen to them, and I know that many may be reluctant to engage with the CQC, but I see this as absolutely key to ensuring a balanced and useful review is conducted, so I’m hoping to encourage people to get involved.

There are likely to be a number of ways people can get involved, chosen from the following:

• Share Your Experience form: currently being built and hopefully uploaded to the CQC website in the next week or two 22 July Update: form is now available here https://cqcsurvey.sicloud.atos.net/#/user/public/welcome. This form will be critical for gathering people’s experience and identifying people who wish to be involved.
• One-to-one phonecalls or meetings: people will have the opportunity to indicate their willingness to be involved further if they complete the Share Your Experience form. These conversations would capture more detail about their experience.
• Live Q&As online and potentially a live twitter chat – these ideas are in the early stages but we’re keen to use as many ways as possible to connect with people.
• Sense-checking events with families and relatives once preliminary findings and recommendations are available.

Once the Share Your Experience form is available I’ll blog again with a little more detail about some of this strand of work, and some of what I think we need to be aware of when asking relatives to get involved.

When will the review end?

The review is due to report by the end of 2016. At the first ERG there were lots of people sucking their teeth and advising the CQC team they were over-ambitious and naive to think it was possible to complete this work in six months. I’m a relentless optimist, and have complete confidence in the team that they will report this year. I’ll let you know if that confidence wanes.

Why does everything take so long?

I don’t know. I just don’t, I’m not even going to attempt to offer an explanation.

Honestly, how do you think things are going so far?

For me the absolutely age inducing slow progress at the start of this year, has been somewhat counterbalanced by the pace of change since. A lot of concerns I had about this being window dressing, a pretend exercise in engagement, have been reduced. I’m a cynical optimist though and can’t let go of those concerns altogether yet.

I’ve been impressed at the openness (to challenge and criticism) of the CQC team, and their willingness to listen and adapt. They have taken on board the feedback about understanding how families were treated (not just mining them for learning); they have committed to making the agendas of ERGs publicly available in advance and making notes of ERGs available within five working days (and met that deadline today) – some people seem a little bemused that people might be interested, but I’ve reassured them they are!

For all the positives though, I am disappointed that the scope excludes private providers, and I do have concerns that we’ll not be able to incorporate a family perspective unless people are prepared to share their experiences, so expect more on that from me in the near future.

Where can I find out more?

ERG 1 Notes are available to view here

ERG 2 Notes are available to view here

A scoping paper with more information on the background of the review is available to view here

An easy-read summary of this work is available to view here

The review’s page on the CQC website is available to view here.

How can I get involved?

Feel free to drop me an email, or send me an tweet (preferably including the #CQCDeathsreview hashtag) if you’re a family member or relative of someone who has died in NHS care, and you would like to share your experiences of the investigation process – although the first step will be to complete the Share Your Experience form. As soon as it is live I’ll be updating this post with a link to it, and will try to write another post too. Please feel free to share this post with your networks, on facebook or twitter or by email. Please share it far and wide and do get in touch with any queries. Thank you.

22 July Update: the Share Your Experience form is now available for family members to complete here https://cqcsurvey.sicloud.atos.net/#/user/public/welcome you can complete it anonymously if you prefer, however, if you wish to be considered for later involvement then CQC will need your contact details.