Don’t Stop, Continue: Bereaved Parents’ Voices Matter

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:

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.

My beautiful Hugo.

My beautiful Hugo.

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.

Me and Hugo, the day before his funeral.

Me and Hugo, the day before his funeral.

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.

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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 mumsvoice@tommys.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.

Mums-voice-Award---Seraphine---CMYK---2016

9 Comments on Don’t Stop, Continue: Bereaved Parents’ Voices Matter

  1. CQC
    December 22, 2015 at 5:26 pm (1 year ago)

    Hi Leigh,

    Thank you for taking the time to feed back to us about our maternity survey. We’re sorry if the survey left you or anyone else feeling excluded regarding such a difficult experience. Our Twitter messages may have implied that it was solely a decision made internally to exclude bereaved parents, which was not the case.

    In order to conduct our survey it (and the supporting methodology) has to be agreed by the NHS Multi Research Ethics Committee and the Confidentiality Advisory Group to ensure it meets good standards and practice. In this instance, the Ethics Committee specifically requested that midwives check the questionnaire mailing list to make sure that surveys were not sent to women who had had a stillbirth or who had lost their baby following the birth, as a condition of being allowed to conduct the survey. This was based on the Ethics Committee’s view that it would be insensitive and unethical to ask those women questions around the postnatal care of themselves and their baby, particularly given that the questionnaire would be sent to them just a couple of months after the birth, or very soon after their baby had died. We would need an entirely different set of questions and methodology if we were to submit a questionnaire about the experiences of bereaved parents to an Ethics Committee.

    We recognise its important to get the views of different organisations and individuals in the development of specific surveys and the programme overall. In this case, the survey was developed with the Department of Health, NHS England and the National Perinatal Epidemiology Unit (NPEU) based at Oxford University. Recently we established a wider list of people and organisations that wanted to be contacted when there were opportunities to engage with our survey programme. We’d welcome your input with this, so if you’d like to join that list please do let us know. Through our engagement and awareness work we want people to tell us about the care they or a loved one received (including those who have been bereaved), though our events, or by contacting us directly. Alongside our voluntary sector partners we’re about to begin recruiting experts by experience who join us on our inspections. We’d encourage you or anyone else interested to look out for these opportunities. More info http://www.cqc.org.uk/content/cqc-involve-members-public-more-inspections-ever

    We hope this explains the background to the survey further, please feel free to email us any further questions on patient.survey@cqc.org.uk

    Best wishes,
    CQC

    Reply
  2. Hannah Budding Smiles
    December 20, 2015 at 5:16 pm (1 year ago)

    I sadly know many bereaved parents and they all help to raise awareness, understanding, support… As you rightly say, bereaved parents are equally equipped with the ability to turn down the survey as anyone else, just as I was happy for you to meet or not meet Toby based on your own feelings, not those I perceived you ‘should’ have. Segregation in this manner appears to be best suited to avoiding the discomfort of those conducting the survey as opposed to the best interest of parents and the memory of their children. On a side note, I’ve not seen that photo of you and Hugo before and it’s beautiful, seeing your beautiful boy always seems like an honour xxx
    Hannah Budding Smiles recently posted…My Sunday Photo // 20.12.15My Profile

    Reply
    • Leigh
      December 22, 2015 at 9:20 am (1 year ago)

      Thank you for your support and kind comment, lovely Hannah xxx

      Reply
  3. shoeboxofm
    December 20, 2015 at 12:16 am (1 year ago)

    It is bizarre the thinking that goes behind these assumptions. From any level it doesn’t make sense. If you focus is on improving outcomes then bereaved parents are exactly the people to speak to as they will have insight and experience of what could have been done differently.

    I attended some of the sessions you did for the independent NHS maternity review and found a room full of eloquent, articulate people with thought through suggestions as to what needed to change and how that change could be effected.

    Contrast that with the decision to launch a 12 week consultation on infant burial / cremation (announced in JULY) the week before Christmas. The consultation is like none I have seen before. Usually it follows a standard question / answer format but this one is filled with technical and potentially distressing material e.g. what constitutes ‘ashes’ for the purpose of regulation.

    The timing is terrible, insensitive and the content whilst clearly aimed at the families that had suffered the trauma of baby loss compounded by lost/witheld/mixed up ashes has no hint of sensitivity in its presentation.

    Reply
    • Leigh
      December 20, 2015 at 2:43 pm (1 year ago)

      Exactly! It makes no sense.

      Oh my goodness I had a look at that consultation – it’s extraordinary in its technical language and insensitivity. Astonishing. One extreme to the other! I would imagine no one with anything to do with bereaved families was involved in the creation of that, either xx

      Reply
  4. Tim
    December 19, 2015 at 11:46 pm (1 year ago)

    What a curious and presumptuous approach. I can’t see why bereaved parents shouldn’t have the option of participating. While some might not want to, I can also see how many would view it as an opportunity to contribute in a positive way and share experiences.
    Tim recently posted…Podcast #20: Diary of the DadMy Profile

    Reply
    • Leigh
      December 20, 2015 at 12:20 pm (1 year ago)

      Exactly, Tim. All parents should be able to have the option to make the decision themselves, not have the option taken away from them. x

      Reply
  5. Helen
    December 19, 2015 at 8:41 pm (1 year ago)

    Very well said Leigh. I am a health visitor & I have found that sadly, assumptions can be made by health professionals about the needs of bereaved parents. We
    definitely need more dialogue between parents and
    professionals, so that we can
    help in an appropriate way.

    Reply
    • Leigh
      December 20, 2015 at 12:18 pm (1 year ago)

      Yes dialogue is definitely the positive way forward, Helen, not keeping things in the shadows. Thanks for commenting xx

      Reply

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