Tag: #HugosLegacy

In Appreciation of All That Is Good

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A post in appreciation of the positive things that have happened this week:

– Lazy day on Monday.

Self-care time on the sofa with my Kindle

Self-care time on the sofa with my Kindle

The reason for the lazy day wasn’t so good: a very low mood, unsure of what to do with myself. Fortunately Monday was my no-work day this week so I was able to do some self-care. I read my book: some fiction on my Kindle, and the amazing Flourish Handbook by Cheryl Rickman, which contains these words of wisdom I thought you, dear readers might appreciate too:

 

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I also settled down to watch a film I had wanted to watch for a long time, the classic All The President’s Men. Which leads me to my next point:

– Google!

I am old enough to remember life before Google and social media, but watching All The President’s Men gave me a reminder of how much we now take this technology for granted, and how quickly we forget life before having so much information at our fingertips.

If you haven’t seen the film, Robert Redford and Dustin Hoffman play the Washington Post reporters who uncover the Watergate scandal of 1972 that led to the resignation of President Nixon in 1974. They hunt for evidence, leads and sources using telephone books, and have assistants poring through clippings files for sources’ backgrounds. So much legwork that could be done today in a matter of minutes.

(There is another point to appreciate: such vibrant newsrooms for print media are rare, sadly, with the growth of online news).

– My work (‘proper job’) and my colleagues

My dread of returning to work made me feel incredibly anxious, but thankfully so far the anticipation was much worse than the reality. I call it my ‘proper job’ because #HugosLegacy and #MatExp are like jobs in themselves, but the ‘proper job’ is the one that pays the bills!

I feel very fortunate working on patient experience projects – my love, my passion – and to be making a difference as part of my job. A privilege. I am also privileged to work with wonderful, caring people who love me for being myself.

A meeting with the wonderful Kath Evans yesterday was thoroughly appreciated, too. I really enjoyed the opportunity to chat in person, and left bouncing with positivity and ideas I can’t wait to tell my colleagues about – and get in to action at work.

Kath and me

Kath and me

– #HugosLegacy and #MatExp

Hugo’s Legacy grows more and more by the day. Wednesday brought a trip to London to attend a neonatal clinical outcomes meeting as a parent representative: I was pleased to make a positive contribution, and for that contribution to be appreciated.

This week I received a number of emails and social media messages from readers saying how much my writing had touched them, or helped them in their own grief journey. Why We Need To Reconsider How We Engage With Bereaved People, and Moving Forward, Not Moving On seem to have been particularly resonant. To know that my writing – and therefore Hugo’s Legacy – is appreciated and having an impact is wonderful.

To date, #HugosLegacy has had nearly 100,000 impressions on Twitter (‘impressions’ means that tweets bearing that hashtag have been delivered to that number of timelines), which means (in combination with trending on Hugo’s first birthday in February) the message is getting out there.

#MatExp is growing all the time, too – to date #MatExp tweets have had more than 152 million – yes, million! – impressions, and it was trending this week, too. It’s amazing – I am so proud to be involved. From the feedback we are getting from many sources it seems that health professionals and users alike are appreciating the value of our grassroots, JFDI (just effing do it!) campaign.

A very kind friend sent me some star-shaped buttons because she thought I would like them - greatly appreciated!

A very kind friend sent me some star-shaped buttons because she thought I would like them – greatly appreciated!

– Another year older next week

Birthdays don’t hold the same level of excited anticipation as birthdays as when I was a child. Last year’s birthday – the first after Hugo – was kind of just another day, I didn’t have the heart to celebrate. This year, I am going to try to make more of an effort for no other reason than to appreciate the fact I have lived another year, and that I appreciate the value of growing another year older.

What have you appreciated this week?

 

Mums' Days
The Reading Residence

HSJ Patient Leaders – Changing the Way Health Services Perceive Patient Experience

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Yesterday I travelled to Birmingham for the announcement of the very first list of Patient Leaders by the Health Service Journal (HSJ) – I am honoured to be included in it for my work with Hugo’s Legacy and #MatExp.HSJ

It’s a secret I’ve had to keep for about a month, because the list was under embargo until last night.

That meant I had no idea who else was included on the list, which numbered just 50 individuals. Discovering who else is on the list underlined for me how much of an accolade my inclusion is.

Individuals I admire greatly for their tenacity and determination in using their own experiences to improve the care of others – such as Dr Kate Granger, Alison Cameron, Michael Seres, James Titcombe and Adam Bojelian (Adam sadly died earlier this year; I was pleased to meet his mum Zoe), to name just a few are included in the humbling list.

We are a diverse group, but we share in common the passion to use our personal experiences to campaign, raise awareness and educate to help create better services and safe care for others. We also share a vision for patient experience to be meaningful, given genuine credibility, never to be a tokenistic exercise to ‘tick a box’.

As Giles Wilmore, NHS England director for patient and public voice and information points out in his introduction, the NHS hasn’t always been good at understanding the experience of care from patients’ perspectives. However, as the publication of the list shows the NHS is learning to embrace patient experience, and the value that involving those with lived experience can contribute to improving patient care.

The list is so important, as HSJ editor Alistair McLellan said as part of his opening speech because:

and…

Last night’s event had a inclusive, positive atmosphere with a sense of mutual respect. I enjoyed catching up not only with friends, but also meeting people in real life whom to date I’d chatted to online. Thank you, HSJ and NHS England.

Me at the event, holding a copy of the supplement.

Me at the event, holding a copy of the supplement.

Hugo’s Legacy began about a month after his death, with the publication of my HELLP Raise Awareness post. While I thought I knew so much about pregnancy, I had never heard of this rare pregnancy complication that nearly killed me, and that took the life of my much-wanted baby. Nothing could be done to change what had happened to me and to Hugo, and I wanted to make sure other women were aware of the signs and symptoms of this little-known condition. Women and babies can and do die from it, meaning awareness is vital.

The main focus of Hugo’s Legacy is communication: while clinically the care we both received was exemplary, there were several incidences where additional distress could have been avoided.

Me and Hugo

Me and Hugo

St George’s Hospital, which is where Hugo was born and spent his life has been wonderfully receptive to my feedback. They invited me to the neonatal unit’s bereavement meeting to share my ideas for improving how staff engage with parents who have lost a baby. As a result, they have changed how post-bereavement counselling is offered, and are printing the simplified information I designed for them. I hope the information provides some small comfort for parents leaving hospital without their baby.

The unit knows that despite their best efforts, sadly not every baby will be able to go home with their proud and grateful parents. They are determined to get it right for we bereaved parents. This is incredibly heartening in the context of baby loss remaining.

Since Hugo died, I have given talks at various study days to educate health professionals about HELLP syndrome, birth trauma, parenting a premature baby, and life after the death of a baby.

Working in hospital communications, my experiences as a parent and patient from the other side of the fence were fascinating. I feel privileged to be able to add my professional skills to my personal experiences to help make a difference to other families by making stressful, heartbreaking situations even a tiny bit easier.

Sadly, not all follow the excellent example set by St George’s and other hospitals and organisations with whom I have worked.

Various interactions with individuals and charities have upset me because of the suggestion that there should be a time limit before bereaved parents or those who have experienced birth trauma get involved with projects related to their experience. Their reason is to make sure the parent is ‘ready’, and because it is ‘almost impossible’ to have a balanced discussion about it.

As I have written in other posts, such an attitude is patronising and insulting. It is also discriminatory to confer an arbitrary policy against a group of people.

Any organisation – whether NHS or a charity – needs to remember that everyone is an individual. They need to remember that yes, reliving traumatic experiences when telling one’s story is draining and upsetting, but it can never as be as bad as when it was experienced for real. They need to bear in mind that for some, making a positive contribution helps them move forward (not move on, a crucial distinction) with their lives.

Rather than apply arbitrary policies, organisations and charities need to apply the concept of reasonable adjustments to ensure the needs (whether emotional or physical, or both) of those willing to help are met to enable further engagement.

A few months ago I was asked who is my favourite radical from the past century, and why. Rosa Parks – the woman who defied the segregation of the US Deep South and refused to give up her seat on the bus for a white man. She knew what was right and acted accordingly.

While Hugo’s Legacy has been motivated by my sense of survivor’s guilt, a sense of what is right also spurs me on.

Women such as me constantly experience discrimination. The discrimination is not comparable to the inequalities of segregation, but it shares similarities in that a group of people are excluded because of outdated, irrational, and inaccurate beliefs, decisions, and policies.

I want to make sure our experiences are viewed as valid, our voices heard, our views respected, our babies’ memories remembered.

I hope HSJ Patient Leaders helps achieve this vision. I hope it helps increase awareness of Hugo’s Legacy and of #MatExp still further, for the benefit of families.

I also hope my inclusion in the list demonstrates to others that individuals can make a difference. As an extension of that, I hope the list helps embed patient experience in NHS organisations across the country. By collaborating and respecting the contributions patients have to make we can make a real difference, as the wonderful and very wise Kath Evans wrote in a tweet, quoting Neil Churchill:

 

Views, Experiences, Bias – and a Paradox

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It’s been a rollercoaster few days: constructive discussion overshadowed by insensitivity and bias; and the discovery in a #MatExp discussion of misconceptions and a paradox that needs to be addressed.

Anyone who knows even the smallest amount about me knows that I am passionate about Hugo’s Legacy, which in a nutshell includes improving communication for neonatal parents, women who have suffered birth trauma, and improving information and support for bereaved parents.

Each of these three issues: neonatal care, birth trauma, and bereavement do not receive the focus they deserve. The people who have experienced these issues do not receive the support they need and deserve. That’s why I am so vocal about it.

Why am I vocal? Because I feel I – and women like me – are not being heard.

For example, say there’s a discussion about choice of where a woman gives birth. Some will say women always have a choice. Some will say it depends if you are ‘low risk’ or ‘high risk’ as though that is clear cut and black and white (it is far from it). Some, like me, will argue we had no choice. Or no choice that was meaningful, anyway. Too often, I feel that evidence is quoted at me about outcomes, NICE guidelines and other such things.

What I try to say is that I understand the evidence. But human beings do not obediently adhere to evidence. We are all individual and have our individual needs. Sometimes, our bodies do things that are beyond our control.

My body did things way beyond my control when I was pregnant with Hugo. These things nearly killed me. Understandably, I feel rather traumatised by the events. Understandably, I like to feel like I am being listened to, my experiences respected, my feelings valid when I talk about them.

In short, too often I feel drowned out by doctrine. That is an unfortunate word, but it’s a bit like when you see politicians being interviewed on the news: they often ignore what the reporter is asking them, quoting instead their own key messages.

Without wanting to sound flippant, it sometimes feels like those who quote the evidence at me are putting their fingers in their ears and singing ‘la la la’.

In return, I roll my eyes and mutter ‘blah blah blah’.

It creates animosity and mistrust between ‘sides’. There should not be any ‘sides’ – ultimately we all want the same thing, which is safe, individualised care for women, no matter where they give birth and no matter by which method the baby is born.

Earlier this week, this divide worsened being told in a Facebook discussion:

…but I do think it is a difficulty in having bereaved families leading discussions around maternity care – I for one sometimes don’t know when to take the personal approach and when to approach it as I would when discussing a question of evidence based care with another committee member without thinking of their personal background. There is conflict and I do not think there can NOT be conflict. And having had discussions around birth trauma with women who have NOT got to a place of peace, I do strongly feel that it is almost impossible for them to have a balanced discussion as it is too weighted an issue for them.

The person who wrote this has apologised. But I was so upset about it I sobbed. I sobbed most of the day, and cried myself to sleep that night.

I am sure the person feels bad about writing it, and I include the quote not to provoke further upset, but to underline the point that these views have to be addressed.

It upset me because there an implication that as a bereaved mother I am incapable of being impartial. That I will always be biased. That having experienced the loss of my child and birth trauma has somehow scrambled my brain and my common sense.

The fact is: nothing will bring back Hugo. Nothing will give me back my pregnancy. Nothing will give me back those months I lost last year in a fog of nightmares, terror, and flashbacks and feeling that I was bonkers simply because services had no idea what to do with me.

I have talked before about how lonely grief can feel. I have talked before about how much of a taboo bereavement is.

I have also mentioned the offence I took at how bereaved parents are actively excluded from the national Picker neonatal survey. I am sure the exclusion is with the best of intentions, thinking it is being sensitive. But I also wonder whether there is a concern that they will receive feedback that is too negative. Like the quote above implies, that our feedback will be biased, imbalanced.

It adds insult to injury.

How do we get our voices heard with such misperceptions of the bereaved, and those who have experienced trauma? It is incredibly patronising.

Talking about Hugo's Legacy and MatExp at a maternity Strategic Clinical Network conference.

Talking about Hugo’s Legacy and MatExp at a maternity Strategic Clinical Network conference.

Not listening to people only compounds the upset, and generates more anger, potentially making existing issues more difficult to resolve – and creating new ones.

Reliving my experiences distresses me, as you can expect. But I am not a masochist.

The reason I pour out my heart on this blog, the reason I have got up at stupid o’clock to get on a train to a hospital I’ve never visited before to bare my soul to a room full of strangers is because I want to make a difference to other families’ experience. To make a positive from a tragedy.

Whenever I talk or write about my experiences, I am clear about how everything clinical was gold-standard. What let it down was communication – it underpins everything. So simple yet so easy to get wrong.

What on earth do views like this mean for wider patient engagement?

Do we exclude from engagement or discussions about any service people who are traumatised by their care, or diagnosis? Do we exclude people with long-term conditions? Their views on the issue will surely be weighted by their experiences. Like the bereaved and those who have experienced any kind of trauma, it is something they live with every single day.

Anyone who thinks they are truly impartial they are deluded. We are all shaped by our experiences; those experiences make us who we are. We cannot pick and choose. In the context of patient experience, staff listening to the patients will also be shaped by their experience. To suggest that discussions can only take place with those without ‘issues’ means that discussions can never take place.

We do not fit in to neat little boxes with neat little labels. Evidence-based care is vital, of course, but not everything can be quantified with neat little numbers and put in a pretty chart. Patient experience is about qualitative evidence – giving people a voice, and listening to what they have to say, even if it is unpleasant or uncomfortable.

I’ve been told I am a ‘conversation stopper’. I’ve also been told it’s not just about me. It’s a minefield of emotion.

It has to be put in perspective – your discomfort will last for a short while, but the heartbreak of a bereaved parent will last for a lifetime. That doesn’t mean the feelings of the non-bereaved don’t matter – of course not.

Anecdotally, I have heard and read of women who experienced birth trauma who feel that their story is not valid because they took their baby home. Taking home a baby is not the only thing that matters.

The way people’s experiences affect them depends on so many factors it is impossible to quantify. There is no better or worse, there is no scoring or ranking system.

But on the other hand, there are few people who can imagine something worse than the death of their own child.

This is the nature of the paradox.

There may be people who are unable to understand the paradox, and while that is frustrating I am also glad because they do not understand the pain of grief.

If there are people thinking the voice of the bereaved is loud, we need to take a step back and reflect on why we have to shout so loudly. Keep harping on about the same things.

We need to make sure all views are heard. That everyone feels their views are valid, their contributions valued. That there is no hierarchy.

That is why this is my second #MatExp action:

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Because until we can be more comfortable with – or least accept – discomfort, there is likely to be more unnecessary hurt and upset. Surely no one wants that.

Sunday Thought June 7, 2015: Boxes, Labels, and Survivor’s Guilt

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Grieving means I often feel emotional. I feel especially emotional this morning after watching this film of Alison Cameron’s Plenary speech: From Patient Voice to Patient Leadership at last week’s NHS Confederation conference.

The word ‘inspirational’ is often banded around so much it can lose its true meaning, but Alison is to me the very definition of it.

To give you a bit of background to Alison’s story, her biography on the Kings Fund website says:

Alison is a graduate in Russian who ran medical, scientific and humanitarian projects in the area affected by the Chernobyl nuclear disaster. Her career was cut short when she was diagnosed with post-traumatic stress disorder after her colleagues were killed in the course of her work. The consequences included homelessness, multiple admissions to hospital and identity loss. Alison resolved early on to put her experiences to good use and in the process started to reconnect with the assets that being a passive recipient of ‘care’ had frozen.

Alison now works as a consultant patient leadership and effective public engagement.

In her talk, Alison talks about how we are more than the labels we attribute to ourselves and to others. She talks with passion about how we need to end the tokenism of patient engagement and work together: staff walking in the shoes of patients, and patients walking in the shoes of staff so we can understand one another’s challenges. That ‘putting the patient at the centre of their care’ should have genuine meaning, not become another slogan. She uses the analogy of boxes: to break down these barriers while they are still made of cardboard, and before they become concrete silos.

Listening to this, my heart was filling with passion and enthusiasm. Such resonance: our stories are so different, yet so similar. That wonderful “Me, too!” moment.

Then the emotional climax, for me – the motivation that is survivor’s guilt. I work so hard on Hugo’s Legacy because I am all too aware that I am alive, and he is not because he was born far too early to save my life. I am all too aware that my story could have ended very differently. I know, rationally, that Hugo was born when he was to give him the best chance of life – but there isn’t much room for rational thought in the aftermath of trauma, bereavement, and living with grief.

Alison’s story inspires me to keep on going with #HugosLegacy, and with #MatExp. I have so much to contribute, I too want to be a patient leader: sharing and promoting my values about the care parents like me need and deserve to help all parents in situations like mine have the best possible experience despite trauma, uncertainty, tragedy, and loss.

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