The first Nobody’s Patient pilot workshop was held last Friday, and was a resounding success.
Nobody’s Patient is an extension of the maternity experience (#MatExp) project, looking at three key groups:
- Women who are seriously ill during pregnancy and birth;
- Families of babies who need neonatal or paediatric care;
- Families whose babies sadly die before, during, or shortly after birth, which includes late second trimester, stillbirth, and neonatal death.
Families in these groups often fall between the cracks of services, creating issues with clinical effectiveness, quality of care, and experience – often with profound enduring consequences for the families involved.
To add to that, these families are often limited in opportunities to feedback their experiences; bereaved families are excluded from the CQC/Picker neonatal and maternity surveys which then makes it difficult for services to know where they are doing well and where they can improve.
I know from the difficulties in my and Hugo’s care that those challenges are not created with any malice – often it is a case of not realising what those issues are.
Staff want to do their best for the families they care for, which is why Nobody’s Patient is so vital.
The pilot workshop gathered together a range of professionals – from maternity, obstetrics, anaesthetics, neonatal, paediatrics – as well as families.
You might know that a key feature of a #MatExp workshop is the Whose Shoes game. The game features a range of real-life scenarios from both patients and staff, with the idea of sparking discussion, raising awareness, and generating actions.
A huge thank you to everyone who has sent in a scenario for this project. I haven’t been able to say ‘thank you’ to everyone because I was deluged, please accept my apologies – but please know that your contribution is greatly appreciated.
Friday’s workshop featured the debut of the new scenarios. As well as discussion, awareness, and actions key to all the workshops, we were keen to find out if the scenarios hit the right note, and whether anything was missing.
So, what happened during the workshop?
Catherine of the Pink and Blues spoke about her sad miscarriages, including late second-trimester losses and why Nobody’s Patient is so important to her:
##I spoke about Hugo’s story:
As always, we had fab graphic facilitator Anna to keep track of thoughts and actions:
Some of the key points included:
‘Outliers’ is a term used to describe patients who are in a ward outside the service. A good example of that is when I, a maternity patient, was in intensive care. I got forgotten about because maternity staff were so busy, and I was no longer ill enough to be of concern to intensive care.
The term ‘nobody’s patient’ sums up perfectly how I felt during that time. Staff are always incredibly busy, and a benefit of the workshop is to get professionals from different specialities in a room together to talk and understand the issues – and hopefully take action to resolve them.
The graphic below underlines the importance of language – in Ireland, the term ‘outlier’ is used to describe a cow who is put out to grass. Can you imagine how a patient who knows the farming definition but not the medical one would feel being described in this way?
Describing patients as ‘outliers’ is impersonal and it fails to take in to account that the patient is a whole person: they are more than the internal organ or limb or whatever the reason for their treatment. Also, as in my case this leads to the danger of patients being seen as, or feel a nuisance. That is unfair, leads to poor experience, and is potentially unsafe.
Safety was another key issue – and connected to that, communication.
Patients’ wishes should be listened to and respected anyway, and this becomes even more important in maternity when a woman has experienced a traumatic birth or previous loss.
Women want the staff caring for them to really listen to their fears and anxieties rather than assume they know what they are, or try to brush them away by saying “I’m a professional and I know best.” By truly listening you can strike up trust and rapport with the woman, and do what you can to help manage those fears and anxieties, which may lead to better outcomes.
Staff themselves are important of course!
Staff are very caring and do whatever they can to give families their all. However, they are human with finite energy and emotional resources and their wellbeing needs to be protected just as much as the families they are caring for, so they can provide the best-possible care.
Staff need breaks so they can recharge. When dealing with challenging cases, especially with tragic outcomes staff need some kind of debrief to help them overcome the emotional stress.
Families reflected that it is ok for staff to show emotion – it is good to show that they care, that they matter. This is especially crucial for families who do not get to take their baby home.
I haven’t got close-ups of all the areas unfortunately, but you can hopefully see some in this image. All the post-its represent ideas and feedback that hadn’t yet been written up, so there is also lots more to be finalised.
Some of the key points are:
- To understand that a baby is a baby irrespective of gestation and to reflect that when speaking to grieving parents.
- It can sometimes be difficult to know what to say to a grieving parent. Saying something is better than nothing because it can open up a dialogue. If you are really stuck for something to say, ask the parents for the baby(ies)’ name.
- A better system to denote when a mother has experienced a previous loss/and or traumatic birth or similar difficulty to save her having to explain it over and over – and prevent well-intended but insensitive comments.
- Consistency of care for the above reasons.
- Peer support is really important. Neonatal parents often appreciate a place to gather, share stories, and offer mutual support – lifelong friendships are created this way.
- Mums whose babies are in the NNU are often put in a separate room on the postnatal ward with the best of intentions. However this can be isolating and means the mum can miss out on things like breastfeeding/pumping support.
Dads and partners
Dads and partners matter too – they also need support whether their partner has endured a traumatic birth, their baby needs neonatal care, or whether their baby dies. The baby is their baby too, they have to watch the woman they love in terrible emotional and physical pain and often all they can do is watch. This too can have enduring consequences and they need to be factored in the equation so their needs can be met too.
The workshop concluded with participants making pledges of what they will do differently as a result of what they had heard during the morning.
Several health professionals said they had had ‘lightbulb’ moments during the session – they said they don’t usually receive such feedback, and were keen to reflect and change where appropriate.
I really can’t ask for anything more!
My own pledge is to keep raising awareness through Hugo’s legacy, and to campaign to get bereaved parents’ voices heard. Victoria Morgan and I recently submitted evidence to a parliamentary inquiry on this very issue – I am committed to changing this.
A huge thank you to everyone who took the time to attend.
Below are the fab people behind the workshop: Catherine, Anna, Gill, Flo, me, Sam, and Michaela.
This is only the beginning…there is much more yet to come with Nobody’s Patient. Another pilot workshop will take place at St George’s in September. The exact date is yet to be confirmed.
As always with #MatExp there will be lots of activity – catch up with us on Twitter under the #MatExp hashtag, or on Facebook.
Are you able to spare a moment to nominate me in the Best Campaigner category of the Mumsnet Blogging Awards please? You can find the simple form through this link. Nominations are open until 31 July 2016.