Every so often I get a song lyric going round and round in my head, burrowing in my brain. The most recent one is
Don’t stop, continue
It’s from Give It Away, one of my favourite songs by Red Hot Chili Peppers.
Events this week have intensified my passion for making sure the voices of bereaved parents are heard, to make sure the world knows that our babies matter.
The results of the latest CQC maternity survey were released last Tuesday, and I asked why the eligibility for the survey is only women who had a live birth.
I was furious when I read this response:
@leighakendall @ChrisGrahamUK @FWmaternitykhft Hi, the team have confirmed that it was an ethical decision. It was deemed too distressing…
— CQC (@CareQualityComm) December 16, 2015
@leighakendall @ChrisGrahamUK @FWmaternitykhft We felt the questionnaire would have been too distressing for women that had lost their child
— CQC (@CareQualityComm) December 16, 2015
@Adsthepoet @CareQualityComm @ChrisGrahamUK @FWmaternitykhft I asked y'day whether they'd asked bereaved parents, still waiting for response
— Leigh Kendall (@leighakendall) December 17, 2015
The decision seems to have been made on behalf of, not in association with bereaved parents. Making decisions with, not for, is a basic tenet of the NHS Duty to Involve.
The decision is so paternalistic – how can they think a survey will cause bereaved parents additional distress? Their baby has died, the worst has already happened. By sending bereaved parents a survey you would not be reminding them that their baby has died. But by excluding us – whether that reason is well-intended but misguided or whether we are on the ‘too difficult’ pile just heaps on the hurt and adds to the feeling of isolation.
I wrote earlier this year about how there is a hugely offensive misperception that bereaved parents and mothers who have experienced trauma should not be involved with engagement activities because they are incapable of being impartial.
Many bereaved families are eager to work – productively and constructively – with the services that cared for them. There will often be things that went well, and things that did not go well. There is nothing that can be done to bring our babies back, so for many helping improve future families’ experiences is a way of honouring their memory.
We also cannot assume a sad outcome equates to a wholly negative experience. There is a lot of good practice out there, with families eager to talk about how a particular health care professional(s) made the tragic time a little bit easier with their kindness, empathy and compassion. How can we disseminate that good practice if we don’t ask these parents at this level?
This survey had only a 41% return rate; for whatever reason, more than half of the mothers of living babies who were selected chose to not complete and return the survey. Bereaved mothers are just as capable of deciding whether or not to ignore the survey if they do not want to complete it just as well as the mothers of living babies are.
I understand there are all sorts of survey methodology issues. I am no expert in surveys, so I am not going to pretend that I am. The people at Picker have offered to chat about it in more detail, which I have yet to do (I needed to calm down first).
I do understand that the survey cannot go into every single permutation or possibility of maternity services or mode of birth; survey recipients are randomly selected within the cohort but actively excluding a whole group of mothers is another matter. I also understand that there are separate surveys that look at perinatal death, such as MBRRACE. All of these surveys have value, but a point that concerns me is that MBRRACE can only ‘recommend’, whereas the CQC uses the reports as a “key source of evidence to support the judgements and ratings published for trusts”
Of course surveys are only part of service improvement, and patient experience engagement. But being excluded from a key source of evidence that trusts work is unhelpful towards getting bereaved parents’ voices heard.
The results of the 2015 maternity survey reveal positive progress, which is great news and good to see. Naturally, there are areas of improvement too.
An excerpt from the statement from Professor Sir Mike Richards, CQC’s Chief Inspector of Hospitals “I hope NHS trusts will make full use of their individual survey results so that they can translate the delivery of maternity services into consistent and high-quality care for the benefit of all women and their families.”
I think that’s a sentiment we can all agree on – but we can create consistent, quality maternity care that benefits all women and their families only if we actually take the time to ask them, and that means not actively excluding certain groups. We can’t extrapolate the data from living births and make assumptions about the needs of women whose babies die.
It has taken nearly two years after Hugo’s birth and death for me to get the support I need. Finally, the services have realised I am ‘perinatal’ – I think the lack of a living baby confused the issue. There are many similar such stories.
A knowledge, understanding, and evidence base regarding the support that families like mine need will surely help generate that support. Services in the NHS and the staff within them do their very best with the resources they have, but those who do not receive the same profile tend to get a bit lost.
The NHS National Maternity Review introduced separate listening events and survey for women who experienced pregnancy complications and/or the death of a baby. These needs seem to have been omitted at the beginning of the process, and I was pleased to see them included. I am interested to read the report when it is released in the next few weeks.
There needs to be a way to include bereaved parents in the maternity and neonatal surveys (the latter includes only parents of babies ‘discharged alive’).
Yes there will be a lot of work involved: the ethics procedures, engaging with all relevant stakeholders to make sure the questions are not only sensitively worded but useful to name just a couple of difficult hurdles.
But difficult does not mean impossible. ‘Difficult’ means finding innovative ways to resolve challenges, not saying “let’s not bother”.
We bereaved parents are marginalised and sidelined enough as it is. Please do not add to it. We need to reconsider how we engage with bereaved people.
The effort will be worthwhile when the result could be giving all families parity and the equity they deserve.
In the meantime, I shall continue being a voice for bereaved parents. Our views and our experiences matter, and our babies matter.
I’m honoured to have been longlisted for the Tommy’s Mum’s Voice Award. Can you help me reach the shortlist please? It would be an incredible awareness opportunity for Hugo’s Legacy. All you need to do is write an email to firstname.lastname@example.org with a few brief sentences detailing why you think I deserve to be shortlisted. Please put ‘Headspace Perspective’ in the subject line. Entries are open until next Wednesday, December 23. More information is also available in this post.