Listening Events for Families Who Have Experienced Pregnancy Complications, or Lost a Baby

The NHS National Maternity Review has recently announced four new listening sessions.

The invitation is extended to parents who have experienced the following:

  • The death of their baby before, during, or shortly after birth
  • Complications affecting the health of mother or baby (including neonatal admission after birth)

During these meetings there will be discussions about your views on maternity services. They will focus on learning from your experiences and listening to your suggestions on what can be done to improve maternity and neonatal services in the future. Your views will be treated as confidential and all views will be respected.

The events will take place on Friday 6th November in central Manchester and in London on the 20th November. Please visit Bliss to find out more (I am sure it is on the SANDS website too, but couldn’t find the link on their site. I did however find a link to Lorna’s heartbreaking story. She nearly died from HELLP syndrome, and it shows why more awareness of this devastating condition is needed.)

To book your place, please email info@uk-sands.org, specifying which session you would like to attend and whether you would like to attend in Manchester or London.

Travel costs can be reimbursed.

Sands and Bliss staff will be present to offer support to anyone who may need it, because talking about these events can be very difficult.

I understand there will also be a survey for parents affected by these issues, to follow shortly.

The focus on these groups is very heartening, and welcomed. In my review of the first Birth Tank event I highlighted the fact that the remit of the review covers only six weeks after birth meant issues such as postnatal mental health, neonatal care, and the care of parents whose babies die were being missed. What I Want the National Maternity Review Team to know focused on these issues, too.

I do not, I hasten to add, claim any credit for the existence of these additional sessions – I know representatives of Bliss and SANDS have worked very hard to secure them.

However, for all my gratitude that these sessions are being put on for parents like me, I cannot help but feel a measure of frustration that it took so long for them to be organised. The Review’s nine month timescale is nearly finished.

So often the needs of parents like me are forgotten. To feel like we are an after thought, ‘tacked on’ – is exasperating. Neonatal care, birth complications, and the fact that sometimes babies do die (whether avoidably or unavoidably) are not new revelations.

Yes we are in the minority – but we matter. We are still part of the whole picture. Not getting our care right can have devastating, enduring consequences. Let’s make sure we have a higher profile.

Unfortunately I was unable to attend the second listening birthtank event, but I understand the Review’s Chair, Baroness Julia Cumberledge said that the Review itself cannot execute change. Only actions can make change happen, and we need change agents to help get those actions going.

By our nature, families like us use a great deal of NHS resources irrespective of the outcome – more antenatal appointments, longer stays in hospital for mum and baby, more follow-up appointments. We need to get care right for these families – for the families’ benefit, and the benefit of the services caring for them.

It is not just about bed days, either – it is crucial that services are coordinated in order to meet the emotional and psychological needs of these families. Not meeting these needs can have enduring adverse effects, as I can attest: not only for the affected individual, but also for services’ resources over the longer term.

I very much got the impression services – however well-intended – just didn’t know what to do with me after Hugo died. That has to change.

With an NHS that is struggling to cope financially, ‘lack of funds’ is a reason that is too often given for inaction, or delays on making necessary improvements.

But no money doesn’t mean no action is possible.

A kind word, a listening ear, a bit of empathy is often all that is needed to transform a patient’s experience, and that is no more valuable than when everything is going wrong – your hopes, dreams, expectations of a normal pregnancy and birth and going home with your baby have gone awry.

I shall be interested to learn what suggestions arise from these events, and what recommendations the Review subsequently makes.

But let’s remember we don’t have to wait for permission to make a difference to someone’s maternity experience, whether or not things are going ‘to plan’.

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