My projects and the work I do have been a lot like the TV series Game Of Thrones this last 12 months. Just when you think you have got a handle on what on earth is going on, and what might happen next, something else crops up, new people come along, and you’re hurtling down another path filled with excitement and confusion! Due to the themes and content of the show I don’t want to stretch this analogy too far (!) but just as with characters in Game Of Thrones, it’s great when some of my projects come together again and a few strands can once more be interwoven.
So I am really excited about the #MatExp project “Nobody’s Patient”. Dubbed “#MatExp 2” it’s less of a sequel and more of a spin off. This video from Florence Wilcock and Gill Phillips explains what Nobody’s Patient is all about. The project will be focusing on groups and individuals who traditionally fall through the cracks. The three key groups are:
- Families with babies in neonatal or with newborns on paediatrics
- Women who are unexpectedly severely ill postnatally and are being cared for elsewhere in a hospital, such as on intensive care, on a surgical ward or in A&E
- Women who lose their baby in the middle of pregnancy, and who often fall between maternity and gynaecology
The project aims to find ways of “wrapping services around women and their families rather than them trying to work their way through our systems”. The video explains how you can get involved and add your voice – everyone is welcome to join in, have their say and help to create better services for families.
This is full circle to where I joined #MatExp in the first place, as I joined what was then the NHS Change Day campaign as one of two “breastfeeding champions” due to my work on breastfeeding support in paediatric units. My “hospital breastfeeding” campaign has since expanded to also look at breastfeeding support for lactating women who are themselves inpatients, and this also fits in nicely with Nobody’s Patient. You can read here my thoughts about hospital breastfeeding when mum goes into hospital, and the information that peer supporter Asha Crocker has been gathering for the campaign.
It is so exciting to me that the two strands of hospital breastfeeding – paediatrics and adult wards – can now be brought under the umbrella of the #MatExp campaign as part of this brilliant new initiative. In conversations I have been having with clinicians and family supporters at Alder Hey Hospital it is clear that breastfeeding support on paediatrics is just one of a range of services that are needed to adequately support the health and emotional wellbeing of babies and their families. I am making connections with paediatricians and paediatric nurses all over the country who see the importance of these issues, and I hope that they will lend their voices and experience to Nobody’s Patient.
Florence Wilcock, Gill Phillips and the Nobody’s Patient team are asking for input on key areas in order that they can craft the workshops that will bring together all of the stakeholders for the project. Getting women’s stories has always been easy for me due to the 2,000 or so members of my own private Facebook group for mothers, and again it was a desire to share these stories that initially led me to #MatExp. Having shared lots of birth stories and experiences from my group with the #MatExp team it is wonderful to now be able to share stories of neonatal and paediatric experiences for the new workshops. If you have a story to share please let me know, tweet to #MatExp, contribute to the #MatExp Facebook group or contact another member of the team.
Connecting with people, and connecting people with each other, has always been a passion of mine. It is such a thrill to have that ‘I know exactly the right person for you to talk to’ moment, as Maddie McMahon puts it, and this is really at the heart of what I do. New people are joining and leaving the web all of the time, some staying to draw others in, some finding their connections and pulling off in a different direction, weaving their own webs and strands. And when you think you are in the middle of one particular web it turns out you are making connections for something else entirely….
A midwife on my own Facebook group has an interest in gathering information on women’s experiences of having a baby in NICU…… Well those stories are perfect for Nobody’s Patient! I attended a brilliant study day at Wrightington Hospital to talk about hospital breastfeeding….. and found wonderful work being done in Wigan that corresponds to the Growing Families conference I am organising. I met up with a health visitor friend of mine to catch up on work I have been doing around improving HV services….. and it turns out she is now working with Alder Hey Children’s Hospital to improve patient experience! Connections everywhere, amazing projects being put together by passionate people, people who “get it” and want to make a difference. This is what it’s all about.
This is why I am in the process of pulling everything together and building heartmummy connection, which will be going live within the next month. I want to be able to bring together parents and professionals, knowledge and experience; those who can help with those who need support; those with something to say with those who have the time to listen; new ideas and established practice. Watch this space – and if you have a project to share and I have not already been in touch about adding it to the site then please give me a shout!
Just F***ing Do It has been the motto of the #MatExp campaign from the start, and it was in this spirit that Vanessa Aparicio-Hancox and I decided to put on the Growing Families conference. We had dinner one night and I said I’d been toying around with an idea for an event. She prized my rough notes from me and declared “yes, we’re doing it, we’ll do it next year.” That was in 2015. The wonderful Emma Jane Sasaru and Elena Abell joined the team, and this October the Growing Families conference will go ahead in Manchester.
Our mission is to tackle the postnatal information that desperately needs covering for new families. To explore expectations and evidence around the early days with baby. To keep ticket prices low, with no expectation of making a profit, in order to open up the event to as many people as we can. To ensure that support for the event comes from ethical organisations and those who share our interest in evidence based information and family wellbeing. To give new families the confidence to face the challenges ahead.
And as part of the event, we have a breakout session on Parenting Under Pressure. This session will be led by me, Catriona Ogilvy of The Smallest Things, and Lynne Barton of Entrust Care Partnership. We didn’t want Growing Families to be another parenting conference where those facing a different parenting experience felt left out or unwelcome. Prematurity, disability, ill health – these are things that families face every day and it is no less of a parenting journey just because it doesn’t look like the images in the magazines. These parents still need to know about attachment and bonding. They still need to know about infant feeding and understanding baby’s behaviour. They need to know how to face the challenges to their relationships that come from having a child, and they need to know about perinatal mental health. Protecting emotional wellbeing. What support is out there for their growing family? In fact these messages are perhaps even more crucial for those facing a more pressurised parenting path.
And this of course brings us back to Nobody’s Patient. No family should feel as though they don’t “fit in” to maternity or postnatal services. No family should feel as though parenting information and support and social interaction is “not for them”. No family should feel as though they are on the outside, looking in on the idyllic experiences of others. We all need support. We are all capable of offering support. So let’s bring it all together. And let nobody be Nobody’s Patient.