Nobody’s Patient Workshop: St George’s Hospital

Friday September 23 was a special day, one I have been waiting on for a long time: the Nobody’s Patient workshop at St George’s Hospital.

The workshop is a key part of the Nobody’s Patient project and received funding from the Maternity Review Challenge Fund . The project evolved from the grassroots social media change platform #MatExp, and was inspired in part by my experiences with Hugo.

My beautiful Hugo

My beautiful Hugo

Bringing Nobody’s Patient to St George’s, where Hugo was born, lived and died is an achievement that means so much to me that it is hard to fully express using mere words. That is kind of awkward for a blogger, so I have included some video that I took on the day – the expression on my face and emotion in my voice articulates everything you need to know.

I was flicking through the beautiful book How to Be Fearless that my lovely @honestmum sent to me. I happened upon this page: “be a force for good” with a picture of a girl slaying a dragon. It’s kind of fitting because tomorrow I’m going to St George’s Hospital (hence the dragon reference) to co-lead a #MatExp Nobody’s Parient workshop. I can’t tell you how much this means to me: the project was inspired in part by #HugosLegacy – by the times when I felt so alone, lost, vulnerable and abandoned such as when I was in intensive care after Hugo was born, and when Martin returned home after Hugo died. The aim of the workshop is to get health care professionals involved in caring for families like mine to understand more about our experiences, and to make pledges to improve experiences for other families. I can’t change what happened to us, but through #HugosLegacy I can help future families’ difficult experiences be a tiny bit easier 💫❤️ #hellpsyndromesurvivor #ptsd #neonatal #wellbeing #maternity #hospital #fearless #warrior #love #determination

A photo posted by Leigh – Headspace Perspective (@leighakendall) on

I set off early on Friday morning for the long journey to St George’s – two hours each way by train, involving a Tube trip along nearly the whole length of the Northern Line.

 

I’ve visited St George’s on several occasions since Hugo died, but Friday felt especially poignant as I described in this live video:

The first workshop, in Kingston in early July was a huge success – everything was crossed for St George’s to emulate that.

I was delighted to see so many people attending the workshop – all busy people prioritising the workshop over the million other things they have to do.

Then it was my turn to speak. I’d wondered about videoing it, and after discovering that the internet connection worked well made a last minute to go ‘live’ with it. Thank you to fab Can Do Kath Evans for stepping in and playing camera person!

As it turned out going live was a good decision – even on a Friday morning many people engaged, and some commented saying they also had poor care when they lost their own babies.

(It’s not a video of an empty seat, it’s just the clip that Facebook has randomly selected as the picture!).

The workshop got underway: the room was full of buzz and ideas. Participants barely even stopped for refreshments so engrossed were they in the scenarios and discussion.

All the scenarios are sourced from real people’s real experiences, which makes them very resonant, relevant, and often emotional – for both negative and positive reasons.

Communication was of course a topic that underpinned many of the discussions. Some of the key points from the table I was on include:

  • The suggestion that doctors could use drawings to help parents understand their baby’s condition. Parents are tired, stressed, and emotional – being in the NNU can feel like you need to gain a medical degree within days, and there is so much terminology to learn. Parents are constantly anxious, and their precious baby being attached to an array of beeping machines that are keeping their baby alive adds another level of terror. Visual aids such as drawings of anatomy can help parents understand – and in turn these drawings can help parents explain their baby’s condition and prognosis to family and friends, too. Doctors shouldn’t worry about their art skills – it’s about the concept rather than it being perfect! Anything that helps parents grasp complicated concepts is positive. There are some worries about notes and the formal medical record and governance, but the consensus was that drawings used as part of a conversation with parents are separate to the formal medical notes.
  • NNU mums often have difficulties receiving the necessary postnatal checks (whether or not they were ill during pregnancy, as I was). NNU mums’ priority is their baby, but their health matters too: they need to be as healthy as possible so they can be there for their baby, whatever the outcome. Our table discussed the concept of a ‘virtual ward’ where NNU mums could have their postnatal checks by identified professionals who crucially would have some training in the needs of NNU mums. Emotional and psychological needs of NNU parents are very often missed.
  • Dads and partners matter! Our table discussed how dads can be left out of the equation. There are times where they have been left alone after a traumatic birth, with blood everywhere and the in the delivery room looking like a scene from a horror film, their wife/partner and baby having been whisked away. The group talked about how in an emergency situation the room will be full of a range of professionals doing what needs to be done. Even if the procedure or equipment is routine, it may seem terrifying to the relative. Often after the emergency all the staff will leave the room with the patient, or go off to attend to other matters. Someone needs to remember to speak to the relative, debrief them, keep them updated, and give them information – not leave them standing panic-stricken.
  • I was heartened, especially after the disjointed nature of my own care, to see the dedication of professionals from various specialties keen to work together to give these mums and families the best possible experience and minimise additional stress.
The game in action on my table

The game in action on my table

Gill made this fab video of the awesome graphic facilitator Anna rounding up the feedback:

 

In case you don’t have time to watch the whole video, some highlights amongst the many excellent pieces of feedback and pledges are:

  • A method of parents keeping an eye on their baby even when not physically present, eg FaceTime. This would have been so helpful to me when I was in intensive care in the hours before I was able to go and see Hugo, and for both Martin and I when we had to go and rest. Every neonatal parent needs to rest, and some parents need to go to work and/or care for other children too, so making use of technology would help parents feel able to be close to their baby at all times.
  • To see the mother and baby as one unit. The postnatal ward and NNU currently do not communicate well with each other; these links need to improve. In particular, the postnatal ward needs to better recognise the needs of NNU mums with things like expressing breast milk; food, emotional support, and being in the NNU with her baby as much as is possible.
  • Ideas to help parents understand and get involved with their baby’s care as much as possible, for example emoticons on the incubator to signify how the baby is doing.
  • The need for kindness, empathy, and understanding for any parent who is seriously ill during pregnancy, whose baby is cared for in an NNU, or whose baby dies at any stage during pregnancy.

Below are some excerpts from the graphic facilitation:

language

care-4

comm-2

care-3

The nearly-complete graphic.

The nearly-complete graphic.

After the conclusion of the workshop we spent a lovely couple of hours in the First Touch garden, soaking up the glorious sunshine:

 


ft-garden

 

Flo, me, Catherine, and Gill in the First Touch garden

Flo, me, Catherine, and Gill in the First Touch garden

We ate our lunch in the garden.

I asked Flo to take a picture of me with my fruity couscous which I know she found a little odd. I said I’d explain…

While I was on the postnatal ward, the food on offer wasn’t terribly nutritious. In fact, I’d usually only have breakfast on the ward (rice krispies, with bread – not toast – with jam, and a hard pat of butter that I’d attempt to spread with a plastic knife). Lunch was an egg sandwhich and a yogurt often getting warm by the time I ate it, and I gave up ordering dinner because it would have been left by my bed and was cold by the time I had returned from being with Hugo. Before my arrival on the postnatal ward, I had barely eaten for the previous week because I had been so ill. I needed to build up my strength, to help me recover and to produce good breast milk for Hugo.

Thank goodness for the M&S in the main reception of the hospital. Martin used to buy nutritious food for me there, and I became a bit addicted to the fruity couscous – eating some last Friday felt symbolic.

fruity-couscous

Sitting in the First Touch garden provided a chance to reflect. While I always feel connected to Hugo, I also felt close to him there because the building behind the garden is where he physically existed.

But I had to make the long journey back home.

On the train on the way home from a very productive and emotional day at St George’s. Hugo’s place, where he was born, lived, and died. Returning to the hospital is always full of mixed emotions: happy and sad. Achieving this Nobody’s Patient workshop makes me feel so proud. Participants really understood the issues, and are eager to put in place actions that will help improve the experiences of families like mine. Hugo is not in my arms, but he is helping so many others. I am privileged to have met many special people who have listened to and respected my views and want to take action. My blog and #HugosLegacy has achieved more than I imagined. It will take s while to sink in I think ❤️💫 #hellpsyndromesurvivor #ptsd #emotional #passion #movingforward #matexp #makeachange #fearless

A photo posted by Leigh – Headspace Perspective (@leighakendall) on

The next morning I was feeling pensive:

Be patient and don’t give up…this sentiment could apply to so much. Therapy for example, or workouts – and keeping going even when progress feels elusive. But this morning it is about #HugosLegacy. The workshop at St George’s is something I wants to achieve for more than two years. It’s more than two years of campaigning, spending time going to meetings to get my voice as parent representative heard rather than be a tokenist bum on a seat, writing on my blog and giving talks about how my experiences with Hugo felt and what staff could do to improve things for other families. Now it has happened and been so successful. Staff do ‘get’ it – many of the solutions are so simple. And some solutions and improvements have already been implemented which is very heartening. I feel emotionally drained – but a sense of peace, too. That’s not to say it’s all sorted now because there is still a lot to do…but the workshop is a huge achievement. So much energy and passion to get things right for families and the staff who care for them. And it’s all because of a tiny boy called Hugo – he impressed everyone with his fight and spirit during his life, and now I am continuing that in his memory ❤️❤️❤️ #MatExp #hellpsyndromesurvivor #ptsd #love #babyloss #determination #positivity #wellbeing #movingforward

A photo posted by Leigh – Headspace Perspective (@leighakendall) on

I would like to say a heartfelt THANK YOU to everyone who made this workshop a reality through organising it, and to everyone who attended. Martin and I cannot change what happened with me, and we cannot bring Hugo back. Helping other families through Hugo’s legacy helps us by knowing that Hugo can never be forgotten, and that his life has had purpose.

St George’s has been brilliant at listening to the feedback I have given them about the experiences of my own care and Hugo’s care, and has already implemented many improvements where necessary. I shall always be grateful to the hospital for saving my life, and for giving us 35 precious days with Hugo. The hospital and the staff who work there will always have a special place in my heart.

And, of course, Nobody’s Patient is about more than me, Martin, and Hugo. It is about ALL families who find themselves in a similar situation. We are working together to help prevent other families falling between the cracks of services, and avoid unnecessary additional stress and upset.

The St George’s and Kingston workshops are part of a pilot that we hope other hospitals nationally will take on board.

Because nobody should feel like they are nobody’s patient.

 

adviceneonatal

I’m honoured to have been shortlisted in the Best Campaigner category of the 2016 Mumsnet Blogging Awards. Please would you take a second to vote for me, and help me reach the final? Voting is open until October 7.

 

mumsnet

Leave a Reply

Your email address will not be published. Required fields are marked *

Comment *






CommentLuv badge