This quote was from a bereaved family member who spoke to me as part of the CQC Deaths Review. It is a conversation I have often ruminated on since we had it. A remarkably tenacious mother who had done everything in her power to get answers to what happened to her baby, and ensure that the mistakes that were made in care were not repeated again.
‘The most toxic, damaging, compounding, devastating thing that happens is they drip feed you information, they give you a tiny closed off answer. Letters are sent Friday so they arrive Saturday morning, you’ve nowhere to go, nothing to do with it. Every single time a piece of information came through it raised another question, and another question, and another question’ (1-1 conversation) Family involvement in, and experience of, death investigations by the NHS
The insights shared by bereaved family members were achingly similar, their experience when a loved one died in NHS care was awful, and indefensible. Families of those with a learning disability spoke about the same prejudices that awareness campaign after awareness campaign have done nothing to shift, the idea that learning disabled people should just die earlier:
“I was put in a room. I shall never forget what the nurse in the room told me. She said, ‘You have got to accept that his time has come’ bearing in mind that my son was just 34 years old. They knew damn well that something was going to hit the fan hard, there was an atmosphere of fear in the room” Inquest Family Listening Day
The CQC review published last December. Since then I have repeatedly asked for families to be involved in the work that emerges from the review. I’ve also requested time and again that families are kept informed of what work is happening, and how what they shared is being used to improve things. Some of the ways/times I have asked are highlighted below:
1) 31st Jan – Blog post – Actually bringing about change #CQCDeathsReview
I wrote this post and tweeted it directly to all of the National Quality Board members that I could find on twitter the night before their meeting. NQB is made up of the great and the good of organisations across the NHS who would need to work together to improve care. The minutes from that meeting include the following statement in relation to the draft National Framework on Learning from Deaths:
Would need to reflect the balance between accountability and candour. Involving families and carers is crucial to every step of the process and therefore also the design. The next draft of the guidance would need to be shared with the advisory group involved in the CQC review.
It would appear that the need for families to be involved in the design of an improved system of learning from deaths was understood, albeit not a central consideration.
2) 21st Feb – Final CQC Deaths Review Expert Reference Group Meeting
I live tweeted from this meeting. There was much discussion about concerns with the draft NQB guidance and the lack of commitment to engaging with families. This was so frustrating given the CQC team had really appeared to understand the challenges and were genuinely committed to hearing from families, as soon as the work was passed to a different team in the DH any such commitment was lost. Similarly the focus on people with a learning disability was lost, ironically (sickeningly) the workstream on MH and LD parity is TBC**, as far as I can tell, it still is.
Spot the gaps…. pic.twitter.com/D78o8H1po9
— GeorgeJulian (@GeorgeJulian) February 21, 2017
The exercise below was particularly painful – a ‘mapping exercise’ led by a ‘delivery partner’ that set out outcomes, processes and who was involved. It appeared to be completely ignorant to all the work that had already happened in the CQC Deaths Review and did not mention families at all, not once until the ERG members fed in (it would however have got a full house on the change agent led bingo card though).
You know @DHgovuk line re patients as partners…. green post its outcomes, blue process, orange delivery chain
— GeorgeJulian (@GeorgeJulian) February 21, 2017
This was drafted by the team in DH responsible for implementing learning from the CQC Deaths Review though. The minutes of that meeting also make it clear that concerns were heard, here’s an extract:
3) Ongoing emails and discussion
Around this time I had also been involved in a number of conversations with people from the Department of Health who were drafting guidance. I refused to comment in detail on the guidance (because they had no budget and I was not prepared to offer advice for free – its a limitation of being a freelancer), but I repeatedly reiterated that I was not the person they should be speaking to, and instead they needed to be working with bereaved families and coproducing work for every workstream.
Looking back over the NQB papers and minutes from their March meeting my concerns (and those of others) were clearly heard:
This is an extract from the paper discussed at the March 2017 NQB meeting. The full paper is here (the highlight and underlining is on the original).
The minutes of the meeting also indicate that the NQB heard concerns about family involvement in ongoing work (the highlight is mine). The NQB heard loud and clear concerns about not engaging directly with families.
The NQB bulldozed ahead with their original agenda. They drafted guidance without any family input and it is woeful. You can read it here. It was launched at a conference on the 21st March. A conference where families were only invited as an afterthought, where no consideration was given to their experience, or indeed how to ensure that they could feed in usefully. The day was utterly underwhelming, the highlight was Scott Morrish sharing his family’s experience but then it was a day of being talked at. No-one who I’ve spoken to since who attended (family member or NHS staff) felt like it was a well handled conference or a good use of the resource committed to it (trusts were compelled to attend with one senior manager and one NED).
Has anything good happened since?
I know I’ll be accused of scraping the barrel here (perhaps rightly) but CQC did keep to their promise and update families in March with what had happened since the review was published. You can read their update here. This is an extract:
This week, representatives from national healthcare organisations, NHS trusts and many of the families and carers that were involved in our review came together at the ‘Learning from deaths’ conference in London to discuss the first edition of this guidance. Their discussions will inform an updated version that will be published on the NQB website.
Throughout the year, there will also be specific responses to the range of issues we highlighted for people with mental health needs or a learning disability, new guidance for families and carers on what to expect from the investigation process and staff training programmes.
Further updates on this programme of work will be made available on the NQB website in April.
The problem is the conference was dire and the guidance is dire. As highlighted above it chose to ignore all the feedback raised about engaging meaningfully with families.
Whether or not specific responses have been developed we don’t know because there has been no further updates from the NQB in the last 7 months.
There has also been talk on social media of individual trusts who are working with families to implement the NQB guidance. This is great news, but it does not forgive the poor quality of the guidance that was published, the lack of response to the feed back received, or the silence ever since.
Are families involved in any work?
I was invited to join a Working Group on an NHSE led workstream on guidance for families and carers. I offered to forfeit my place to ensure a family member whose relative had died in NHS care was included. The group was extended to include both of us. This small working group includes Jo Hughes from Mothers Instinct, Rosi Reed and Peter Walsh, a bunch of NHS England staff and one person from NHS Improvement. We have met once in person, in June, and there have been many emails and teleconferences since.
I believe that there is a genuine commitment to co-produce this guidance for families, with families.
I believe that there is a genuine commitment to hear from families about what they think would help others in a similar situation.
The Working Group have worked with the NHS Citizen team to organise a two day event that is taking place next week. Day One brings together bereaved family members and carers to share their ideas and insights into how things could and should be better. What families share will be used to develop guidance, genuinely based on real life experience and not just written by a bureaucrat in the Department of Health.
Day Two sees a group of family members staying on from Day One to feed into the same agenda, this time with staff from NHS trusts. Two newly appointed family representatives for the Programme Board overseeing the work, Rich Huggins and Josephine Ocloo, will also share their thoughts from Day One with the NHS staff.
The event is being broadcast live both days and people can join in online through here. Twitter discussion has already started using the hashtag #learningfromdeaths.
I have done a short scoping review on what families say would help and improve things. This is designed to build on what we already know is so desperately wrong with the current processes. This review has been shared with those attending, and you can download it and read it if you’re interested:
The event next week is the first step in a process to genuinely coproduce guidance as a result of the CQC Deaths Review. It is a first step only, it is by no means enough. It does not explain the silence from the DH staff or the NQB members on the work that should have happened since. It does not explain where the focus on learning disabled people or those using mental health services has gone. It does not explain why ‘the system’ is too arrogant to listen to clear feed back about involving family members.
It does however present what I consider to be the only opportunity (currently) for families to genuinely coproduce guidance, and I am committed to supporting that work and ensuring as wide a range of families are heard from across the two days. I look forward to meeting people next week and the discussion on #learningfromdeaths before and after then.