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.
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:
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.
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.
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: