Tag: hospital

What Happened at the National Maternity Review Team Listening Event?

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Yesterday was the first listening event of the National Maternity Review, held at London King’s College.

The invitation, from the Chair of the review herself, Baroness Julia Cumberledge promised that the event would “…be pooling ideas to improve maternity services.”

And that “We are most anxious to hear from all those who have an interest in maternity services; the public, users, commissioners, professionals, and organisations who would like to contribute to our initial thinking. We believe there is much that is exceptional, good, kind, and sensitive to the needs of women and their families. But we also know that there are services which could improve and some which are deeply disappointing with issues that need to be addressed. At this early stage in our work, we do not have any answers but wish to hear from you and your colleagues about your experiences, your thoughts, views and opinions and some possible solutions.”

I was invited because of my work with #HugosLegacy and #MatExp. Hugo was of course present via his handprint on my necklace:

And I was keen to share to promote the post What I Want the National Maternity Review Team to Know

How did the event perform against these objectives?

Overall, very well. The room was full of a range of interested parties including consultant obstetricians, midwives, members of the Royal Colleges of Midwives and Obstetricians; various NHS organisations, members of organisations that had been set up in response to personal tragedy (such as the MAMA Academy and the Campaign for Safer Births whom I was pleased to meet but did not have enough time to talk to).

Julia Cumberledge introduced the event by outlining the scope of the review, which is looking at the maternity experience from conception through to six weeks after birth. The timescale for the review raised a chuckle…

Workstreams include choice, continuity, diversity, professionalism, culture, accountability (mutual respect between professionals and teamwork), levers (triggers and incentives) – and barriers.

The comms plan for the review includes visiting centres across the country so as many voices as possible can be heard.

I loved the ethos for the event:

Be compassionate

Be a friend

Have fun

Assume it’s possible 

And so we began with the first round table discussion, looking at issues and solutions.

A few points from the discussion (facilitated by Cathy Warwick) on our table include:

  • Women need individualised care within a system that genuinely supports the range and variety of experiences and needs women will have
  • Polarisation – high risk/low risk and between obstetricians and midwives – is very unhelpful
  • Connected with the above point, for better collaboration and teamwork between midwives and obstetricians – no ‘them’ and ‘us’. There is evidence to prove that training and working together as a team provides positive results.
  • Dignified care and safe care need not be mutually exclusive (contrary to what some of the polarised debate about where is ‘best’ to give birth may suggest)
  • Time for training – health professionals want to do the best they can for their patients, but are constrained by lack of time for training. Training on things like team working (such as cross over training between midwives and obstetricians so each can better understand each others’ perspectives) and effective communication would be invaluable.
  • Targets – such as C-section rates – are a barrier to women receiving care that meets their own individual needs.
  • Policies, procedures and guidelines are important of course, but there needs to be more encouragement for health professionals to use their own judgement to respond to women’s individual needs without fear of punitive action. This connects to issues relating to training and teamwork – enabling staff to do their jobs and giving them confidence in their practise – in short, empowering them to do their best.

Feedback from the other tables was insightful, including this point that being part of #HugosLegacy was music to my ears…

twitter

There needs to be a seamless care pathway to better meet the needs of mums whose babies are in the neonatal unit, as described in my post about what I want the review team to know.

Other points of insight included:

  • Need to make sure good practice can be shared across hospitals
  • Need to find ways to make sure care is women-centred – this goes back to tick boxes and things like C-section targets.
  • Need for better postnatal care.
  • Need for commissioning that is better connected between CCGs, local authorities, and NHS England.
  • Need to look at culture – acceptance that innovative vision is the way forward to make the changes that need to happen.
  • We need to manage risk, risk should not manage us. Antenatal education needs to empower women to make the right choice for them.
  • We need to eradicate concept of ‘high risk/low risk’.
  • Women and their families need to be more involved in the creation of pathways
  • Evaluation methods need to be more useful for service users – and the feedback meaningful.
  • A woman needs to be seen as a whole person, not a womb with legs – her emotional and psychological needs, for example, need to be considered too.

Three crucial concepts are: language, behaviour, and leadership.

(This is not an exhaustive list, and I may have missed things!)

There are a few issues that bear further exploration, for example: the remit of the review includes experiences up to six weeks after birth. This has the potential to miss two crucial issues: postnatal mental health, and the needs of mothers whose babies are in neonatal care, and/or who suffer a loss. The needs of these women extend well beyond the six week timeframe, and have long-lasting, serious consequences if those needs are not met.

I would be interested to see how the review incorporates these issues.

From a personal point of view, the event gave me a wonderful opportunity to catch up with and meet fantastic people whom I have got to know through social media. I won’t try to name everyone because I usually end up missing people out, but here are some photos…

Flo and I managed to stop talking long enough to take a photo

I loved seeing Alison Baum again (she’s CEO of Best Beginnings, creator of the DVDs for which people so generously donated money for Hugo’s first birthday) and meeting Heidi, founder of the MAMA Academy, of which I am proud to be an ambassador.

Meeting and having a chat with Jacque was fab

Gill and I enjoyed a lovely evening chatting. We forgot to get a selfie, but I have a picture of my pink shoe on my pink bag…

Flo took a JFDI #MatExp view to sharing the campaign, with one of the brilliant graphics and giving people an overview of the Whose Shoes game.

I may be biased, but the innovative, grassroots, no-hierarchy approach of #MatExp is key to the success of the review. It is heartening to see there is interest:

The event nearly ended in tears for me, however. Chatting about #MatExp to two ladies at the end of the event led to me sharing my own experience. Asking how long Hugo lived for (35 days), they commented that it was ‘quite a long time’. I disagreed, saying that it was not nearly long enough. Objectively, I know that as Hugo was born at just 24 weeks the fact I got any time with him at all was miraculous, and I am very grateful for every precious moment I had.

But a tip for others when talking to a bereaved mother: DO NOT try to tell the mother that they are in any way ‘lucky’, and especially DO NOT persist in your point of view once the mother has expressed upset.

The women did apologise, saying it’s difficult to know what to say to bereaved parents. Another tip: empathy is key. ASK the parent how they feel, and if you really don’t know what to say, STOP TALKING.

Considering the breadth of experience of women – and men – attending these events will have, taking a moment to consider sensitivity, as well as sensible things to say (and not say!) is crucial.

Fortunately, it did not mar the very constructive and productive day. I hope we can see our thinking translated into real action and change for women and the staff who care for them.

Next steps are…

and if you want to be involved…

 

 

Mums' Days

What I Want The National Maternity Review Team to Know

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The National Maternity Review is going to be assessing current maternity services, and consider how services across the country should change to meet the needs of women and babies.

My son Hugo was born in February 2014 when I was just 24 weeks’ pregnant because I had the rare, life-threatening pregnancy complications HELLP syndrome and preeclampsia. The day before Hugo’s birth, I had been transferred to a specialist hospital two hours away from my home. Hugo died in my arms aged 35 days.

I have written about my experiences extensively in other posts on my blog. To very briefly summarise, there is nothing I can fault in the clinical care either Hugo or I received. However, there were many issues surrounding communication that could have prevented further stress in an already heartbreaking situation.

Hugo’s Legacy is about helping other women who suffer birth trauma, other families with a baby in neonatal care, and parents who lose a baby. Anyone who experiences any of these things deserves compassionate care, and a streamlined system that enables people to get the support they need, rather than battle against it.

So this is what I would like the National Maternity Review to know:

That every woman is individual.

That evidence is vital in the context of providing safe care. But to recognise that evidence cannot tell you everything. Each woman, each situation needs to be considered according to its own merits.

Postnatal care – Hospital

That any new mother separated from her newborn baby for clinical reasons, as Hugo and I were, should be reunited as soon as it is clinically possible.

That no new mother should be left in an intensive care bed, her baby in the neonatal unit fighting for his life, feeling that she is the least important patient on that ward.

There should never be a delay due to interdepartmental squabbling about beds, and to which department the responsibility of taking the mother to see her baby belongs. (This happened to me in intensive care).

That postnatal wards need to have a greater awareness of the needs of mothers whose babies are being cared for in a neonatal unit. It is difficult enough for us being on a ward with women who have their babies with them. Please don’t delay us visiting the neonatal unit to see our babies because of a lack of coordination between maternity and neonatal about timing of rounds. Please don’t force us to make our own meal arrangements because the food that is provided sits getting cold on a tray next to our postnatal bed, while we are spending precious time with our baby.

Me and Hugo

Me and Hugo

Postnatal care – Community

That better consideration needs to be given to the postnatal care needs of mothers whose baby is in neonatal care, especially when the woman has been transferred to a specialist hospital away from home. The pathways need to be clear, sensible, and appropriate staff aware of them. For example, at first I was told I would need to make the four-hour round trip to see my own GP – impossible. Then I was told I would need to register with a local GP – challenging. Eventually I was able to see a community midwife at the hospital.)

Support for Birth Trauma and Bereavement

That no bereaved parent should return home with empty arms and feel cast adrift from the hospital. To have to find their own support. To have to make telephone call after telephone call explaining an illness they do not yet quite understand and have to say the ‘D’ word again and again. To feel like such a failure as a woman and as a mother. To have to relive everything that happened again and again because services in the 21st century seem not to find the capability to communicate with one another.

That there is support for women who have experienced birth trauma, and for bereaved parents, but people need to know about it – professionals need to know about it so they can direct parents accordingly. Let’s use some of that 21st century communication capability to close those circles, make those connections.

That when a woman makes a complaint about her care, (or feeds back about her care in any way) they are listened to respectfully. That they are made to feel like a human being with emotions with a response that includes words like ‘sorry’ where appropriate. That they do not receive a response that feels like a report to the trust board, a box ticked. That they are reassured learning has been made so no other woman has to suffer the same upsets, the same heartbreak, the same trauma. The same nightmares.

That Language Matters

No mother should ever be told by a panel of consultants their recommendation to ‘withdraw treatment’ for their child while that same panel of consultants stands, mouth agape as the mother lies crumpled on the floor, sobbing as though her heart has been ripped out of her chest. Which it has.

No mother should have to be told dismissively “all mothers feel guilty”, as if that is a salve on their pain.

No mother should have to read in a referral letter inaccuracies about the details of her son’s life and death, and for the GP who wrote it to phone her to apologise with the excuse that they did not read her notes because they were ‘too busy’.

No mother should be made to feel like she is abnormal because of what the trauma of her own life-threatening illness and grief over the death of her son has done to her mind. Instead, she should receive compassionate support to help her understand, and live with the trauma.

This is part of my story, a snapshot of my life and experiences since February 2014. There is nothing that can be done to undo what happened to me, or to Hugo. There is nothing that can be done to bring Hugo back.

But there are things that can be done to prevent other women suffering such unnecessary additional upset and torment.

That is why I would like the National Maternity Review to read, to listen, and to take account of my experiences.

In Hugo’s memory.

A Story That Begins With a Hospital, Ends With a Hospital (oh and there are hospitals in the middle of the story, too)

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I was nervous about going to hospital this morning. It had been a long time coming, and many preparations had been put in place. Last night, I got ready my bag and the outfit I was going to wear, to help minimise the stress this morning. So many kind people sent supportive messages and best wishes. This morning I got up bright and early and went off to hospital – just not the one I had planned to go to, or for the reason I was nervous about.

This morning was supposed to have been my first day back at work at a hospital in my neighbouring town. Martin, my other half had been complaining of back pain yesterday, which steadily worsened as the day progressed. Last night the pain worsened to the point where he was in agony, and he could barely move.

The GP was considered but bearing in mind the level of pain and mobility, I thought A&E was best. As it turned out, it was a wise choice because he needed an x-ray (being an NHS Comms person who has worked on Choose Well campaigns, going to the right service for our needs is ingrained!).

Thankfully, while Martin’s condition is very painful and uncomfortable, it is a nerve problem that is not serious. He has strong pain meds, and the option to return to hospital if the pain worsens.

Flowers in Hugo's garden.

Flowers in Hugo’s garden.

There is an irony to our hospital visit this morning. My return to work marks the end of a period of our lives that began with a visit to the same hospital back in February 2014.

I left my desk thinking I would be away from work for a week’s leave. Martin and I had gone for a ‘babymoon’ at a posh hotel. It is there I started to feel unwell one night with the ‘heartburn’ I now know to be symptoms of the preeclampsia and HELLP syndrome.

A few days later, I was sent to the local hospital by my community midwife. We hoped the hospital visit would be brief – perhaps having to return for multiple appointments until the end of my pregnancy.

Not so – I was admitted, and sent to a specialist hospital two days later where our baby son was born 16 weeks prematurely to save both our lives.

Since then, our lives have revolved around hospitals for one reason or another: the five weeks of Hugo’s life; debriefs with my obstetrician; tests to discover if there was a cause for HELLP syndrome; psychotherapy appointments.

This has meant a return to work in a hospital is daunting – not only because the period of time that has elapsed – but also because it is in a hospital (even though it is not one I or Hugo were cared for in). Any hospital has so many triggers: smells, sounds, ambience.

Thankfully on this occasion we were able to return home after a few hours, with none of the drama or action stations related to my own serious illness. I’ll be returning to work tomorrow instead.

As a result of my illness and Hugo’s death things are very much in perspective for us: we understand what our priorities are.

Our visit to A&E this morning underlined what Martin and I already know from the last 15 months: you never know what will happen tomorrow.

Communication Matters: Results of the 2014 Neonatal Survey

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Imagine seeing your new baby in an incubator, covered in tubes and perhaps ventilated to help them breathe. Imagine seeing your new baby in pain and there being little you can do to make it better. Imagine being surrounded by unfamiliar machines that beep relentlessly, unfamiliar words, terrifying news, feeling constant bewilderment. Imagine not being able to hold your new baby, cuddle them, do all of the things you had expected to do with them.

For most parents, this is unimaginable. But it is the reality for parents whose babies are in neonatal care.

The results of the Picker 2014 Neonatal Survey reveal many heartening, positive results but a need for improved communication. Effective communication is at the centre of good health care and patient experience. Effective communication is my passion, and the focus of Hugo’s Legacy – the findings demonstrate just how much this work is needed.

Being a patient in hospital yourself can often present plenty of challenges: you may be in pain, uncertain of what is happening, and feel disempowered. These feelings are increased exponentially when your child is in neonatal care.

This section of the report – the areas that performed least well in all units in hospitals across the country – tells a compelling story of what most needs to be improved. Sadly, none of it is news to me.

Picker

Responses to question F2 “Were you given enough information to help you understand your baby’s condition and treatment?” are concerning, with 30% of respondent say they did not receive any written information at all. That is unacceptable.

In my view, the question is misphrased. It would be more helpful to ask “Were you given information to help you understand your baby’s condition and treatment in a way that was useful to you?” If I had completed the survey (I was excluded because my baby was not ‘discharged alive’ – more of that later) I would have said I had more than enough information – too much, in fact to the point it was not useful to me because I was so overwhelmed by it, I didn’t read it.

There is, of course, no one size fits all for communication. Different people need information presented in different ways. Happily, there are many alternatives and units need to make sure they are being proactive to make sure parents know about them all:

– The Bliss guide (this is what I was given: beautifully researched and presented, but far too much for me to take in)

– Tommy’s handbook, which is now available as an app

– Best Beginnings DVDs (Hugo’s Legacy helped fundraise for DVD players to show these films to parents at St George’s)

– Simplified generic and unit-specific information available in communal parents’ areas (I designed a poster for St George’s, where Hugo was cared for).

The information that is offered to neonatal parents needs to reflect the diversity in their understanding, literacy, and the fact that when you are exhausted and terrified information is not always absorbed effectively.

Hugo

Hugo

As mentioned above, surveys were sent only to parents whose babies were ‘discharged alive’. I completely understand why this would be the case: there are so many complex and sensitive considerations surrounding bereavement. However, this means a vital piece of the puzzle is missing from the survey: bereavement care and information. For parents whose babies die, this is as vital a part of the journey and experience as any, and it needs to be considered in order to give a full picture.

For example, question C11 “Did staff give you conflicting information about your baby’s condition or care?” The last week of Hugo’s life was fraught with ecstatic highs of hope, and the deepest lows of despair. The effectiveness of the steroids Hugo had been given to help his lungs had reduced along with the dosage. Frustratingly, we received differing opinions from different doctors: one told us Hugo may need more doses while he grew bigger and stronger on the ventilator, while another told us unless Hugo reached a certain point by a certain day to enable him to be taken off the ventilator “there was no point.”

There are no prizes for guessing which version I chose to give most credence to. Ultimately, the second doctor was correct. Sadly, the first doctor’s view made the news that there was no more hope for Hugo a terrible shock – I was not expecting any such news that day – not to mention the insensitive way such devastating news was delivered.

Bereaved parents will have just as much to say about their baby’s care as parents who took their babies home. There are so many ethical considerations surrounding surveys, but a way needs to be found to make sure bereaved parents’ voices are heard.

Consider, for a moment, the point about 30% of respondents saying they were not given any information. This is bad enough – just like any new parent, those early days and weeks with your baby are precious, and you cannot get them back. We cannot know how bereaved parents would have responded to this question because we were not asked – but consider, for a moment, the devastation and heartbreak of a bereaved parent. How do you think they might feel if they discover, after their baby’s death there was information that could have helped them better understand their baby’s care, or how to better get involved with their baby?

There really can be no more effective motivation to ensure neonatal communication is effective.

St George’s has been brilliant in listening to my feedback, and implementing changes where necessary. I hope other units follow their example.

Mummy, Daddy, Hugo.

Mummy, Daddy, Hugo.

To give credit where it is due, I do have more positive responses to some of the questions in the excerpt above. The night before Hugo was born, staff visited me to tell me what to expect after he was born (A2); I was given two photographs of Hugo so I could admire my son before I was able to see him (B2); we were able to speak to a doctor as much as we wanted (C7), even if the information was inconsistent; I was offered counselling from the unit’s counsellor while Hugo was in the unit, although it would have been useful to have known earlier it was available for bereavement, too (F4); we were very fortunate to stay in the Ronald McDonald House on site (F5), which was invaluable because we were a two hour drive away from home. Anecdotal evidence from other parents suggests differing levels of help and support in these vital areas.

I was cared for in the same postnatal ward as women who had their babies with them (B3), which was not ideal but I was fortunate to have my own room. I understand other women have not been so fortunate. Connected to this point, there needs to be better communication between postnatal wards and the neonatal unit, and a better understanding by maternity staff of the needs of women who do not have their babies with them.

My hope is that as a result of the survey results, improvements are implemented where appropriate for the benefit of all neonatal parents and their babies.

Communication is at the centre of everything

Communication is at the centre of everything

 

Please Vote for Hugo’s Legacy in the Brilliance in Blogging Awards

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Thank you to everyone who took the time to nominate me for the Brilliance in Blogging Awards. I am pleased to have made the shortlist – and I would like to ask for your help again, to vote for my blog help me reach the final.

When I found out my blog had been shortlisted in the Inspire category, I looked at the framed photo of Hugo that sits next to me at my desk while I work. It’s all for you, I said to him. I’d rather have that gorgeous boy with me than anything else. I miss him so much.

I knew the shortlist was going to be announced yesterday. They were announced while I had been out doing other things for a couple of hours, and I returned to a flurry of congratulatory tweets.

So many mixed emotions went through my mind – pride, excitement, amazement – I was rather overwhelmed. Before I replied, I sat quietly and had a contemplative moment thinking of Hugo and everything that has happened in the past year.

As I described in the post asking for nominations, I would very much rather none of you had heard of me, or of Hugo. But you have, and here we are. My blog, and Hugo’s Legacy has achieved an immense amount in the past year. Readers have got in touch to say how much my words have helped them; I have given talks about my experiences; professionals have reflected on their practise, and I am honoured to be the language champion for the #MatExp project. It has given me hope, a purpose, a channel for my passion.

Hugo could not stay with us, and that heartbreak is something I will never fully recover from. I am so very proud that changes are being made, other families are being helped in Hugo’s name, and that he lives on through his legacy. Who would have thought a tiny boy who weighed the same as a tin of baked beans could have such impact?

It is a privilege to be shortlisted amongst some truly amazing and inspiring bloggers. Five blogs from each category will go through to the finals. A vote for any of the blogs in this category is very worthwhile – but of course I would love for you to consider voting for Headspace Perspective and Hugo’s Legacy.

Being shortlisted is a great honour, and progressing to the finals would be an incredible awareness opportunity for Hugo’s Legacy and help make a difference to more lives. I would be very grateful if you could take a moment to vote for me – thank you.