My Maternity Care for #YourMaternityCare

The Care Quality Commission (CQC) which regulates all health and social care provision in England has launched a campaign about maternity care this week called #YourMaternityCare.

They say:

There are nearly 700,000 live births each year in England, and having a baby is the most common reason for a hospital admission.

Our 2015 Maternity Survey found that most expectant and new mothers are experiencing better maternity care when compared to the results from previous years, however, we know that women will have had varied personal experiences.

They ask:

If you are pregnant or recently gave birth, we want you to tell us about the care you received, good or bad. By telling us about your experiences, you could stop poor care happening to someone else.

There is also a video created by Mumsnet with a range of women talking about their experiences.

I fully support the campaign – there is a lot of excellent, compassionate, and safe maternity care provided by a health care professionals in England.

However, maternity services across the country have come under fire in recent years. Some of this has been justified, such as with abhorrent failures at Morecambe Bay Hospital, while other criticism is the result of the complexities of the NHS: funding, resources, expectations for example.

One way we can seek to improve services (besides a huge pot of money, which is unlikely to be forthcoming unfortunately) is to talk openly about our experiences. Not just health care professionals and those in hospital management, or in the Department of Health and NHS England who make the decisions and hold the purse strings, but women and their families too.

That’s what we have been doing in the #MatExp campaign. We have been breaking down the traditional boundaries and hierarchies to celebrate what is good about our maternity services and look at what could be better – and how we can make that happen.

The timing of the #YourMaternityServices is interesting for me. It’s competely coincidental of course, but Wednesday marks two years since I was admitted to my local hospital at just 24 weeks’ pregnant because I had the rare, life-threatening pregnancy conditions HELLP syndrome and preeclampsia.

My son Hugo was born at a specialist hospital three days later, on February 20 2014. This Saturday is Hugo’s second birthday. Sadly we will not be celebrating with a traditional toddler’s birthday party – or any party at all, because Hugo died in my arms 35 days later.

Hugo’s death is no one’s fault. Obstetricians, midwives, anaesthetists, haematologists, radiographers, neonatologists and a range of professionals saved my life, and gave Hugo the best-possible chance. He was too small, and premature.

The trouble is, it is very difficult as a bereaved parent to get my voice heard. Bereaved parents are actively excluded from the maternity and the neonatal surveys – apparently it is considered ‘too distressing’ for us.

We need a sensitive approach of course but we are not made of glass.

Without wanting to repeat what I have written in previous posts about this, I continue to find the exclusion beyond words.

Today the CQC has suggested that they want to hear the views of bereaved families, but we have to make special efforts to do so.

(Sorry for the fragmented conversation above).

There are so many reasons why excluding a whole group of parents from these surveys is wrong.

The main one is about improving care. If we bereaved parents do take the time to feed back to the CQC about our experiences – whether positive or negative – how are our comments integrated with the survey feedback, which hospitals and the wider health services use to identify areas for investment?

This week is also coincidentally seeing a focus on mental health. One of my biggest issues has been getting the psychological support I have desperately needed since my illness and Hugo’s death.

A report released by NHS England today says:

Inadequate and underfunded mental health care in England is leading to thousands of “tragic and unnecessary deaths” a review has found.

It’s an awful thing for me to have to write, but I could have been one of those ‘tragic and unnecessary deaths’. HELLP syndrome might nearly have killed me on account of being on the brink of multiple organ failure, but a lack of mental health support could have finished the job. There were times I really did feel that low, and that desperate.

The connection to maternity services and CQC maternity surveys is that it took nearly two years for mental health services to realise I am perinatal. Hugo died, which meant no baby, which meant none of the usual perinatal checks (such as they are), which meant I fell through the cracks.

Thankfully, I am still here.

As Consultant Obstetrician Florence Wilcock writes in her post about the results of the 2015 Maternity Survey, we need to work together to make improvements for women and their families.

We cannot make assumptions. We cannot play with people’s lives because issues are put in a pile marked ‘too difficult’, no matter how well-intentioned the decisions are.

For the best part of the last two years I have been telling people about my experiences ad infinitum partly as a form of personal catharsis but also to help improve care for other women.

Just because I didn’t bring Hugo home, my voice should be no less valued, my experiences no less valid.

Let’s find a way to bring all our experiences together – for the benefit of all women, babies, and their families.

1 Comment on My Maternity Care for #YourMaternityCare

  1. shoeboxofm
    February 16, 2016 at 8:52 am (2 years ago)

    As ever you beat me to to the punch! It’s infuriating to see this played out time and time again and no-one learns the lessons! The lack of co-ordination with or even recognition of the work and effort of the #MatExp campaign is frustrating and baffling.

    Reply

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