Hello my name is Kath Evans and I am head of patient experience with the remit of the children,
young people and families at NHS England.
I want to ensure that health care can be as safe as it possibly can be for the children,
young people and families that we serve. I think sometimes we miss a trick by not involving
families as much as we possibly could be and ensuring that they're really true partners in
the care of their child. It’s an issue that we need to be honest about and have a conversation
about too. I’ve been chatting with mums and with dads and also other healthcare professionals
about this. People have shared their ideas and I’d like to share some with you today.
I’d like to introduce you to Leslie. Leslie is mum of Amelie. She thanks healthcare professionals
that listened to her concerns, they took her seriously and they also took action. Here’s
I’d like to introduce you to Leslie. Leslie
is mum of Amelie. She thanks healthcare professionals who listened to her concerns, they took her
seriously and they also took action. Here’s an extract from her blog.
Thank you so much to the nurse who listened and took me seriously, even though Amelie
appeared well and was playful. Thank you to the doctor who in the end did agree to repeat
bloods and wasn’t dismissive of the facts I presented to them.
It’s not that we want to say “I told you so” or be pedantic, it’s simply that parents
notice the very subtle things that may not be so obvious n the grand scheme of things
on very busy wards, especially when caring for our own child 24/7.
I appreciate doctors and nurses have so many medical histories and obs to think about,
and only want the best decisions and outcomes for their patients. However, parents only
focus on their own child’s well-being and often complex needs families understand the
uniqueness and individuality of their child.
And this is a message re-enforced by other parents. So here are some messages
we have collected on Twitter. Paul shares: “we know our children, their skills, their anxieties,
their fears and also how to overcome them! We need to work in partnership”
Leslie talks about her innate intuition as a mother. She may not be able to diagnose but she knows in
her heart when something is wrong.
Anna states that she was so glad that health care professionals listened to her
yet also highlights that as a parent it can very hard to speak up.
And Kylie very humbly states that "parents aren’t always right but then neither
are staff and yet we all want the best outcome. Communication and dialogue are essential."
We know that consistently involving families is complex. Whether it be when that child is
a neonate, whether they are pre-verbal toddler or whether they’re an adolescent and whether
the environment be a neonatal unit, an intensive care unit, a GP surgery, A&E, a busy children’s
ward or even at home.
It is also worth reflecting that there are some particularly vulnerable groups. Those
are black and minority ethnic background, those whose language isn’t English or those who have
a learning disability. Awareness of these vulnerabilities can increase our abilities
to respond effectively.
If you were to seek feedback from the families you serve. What would they say about your
service? Do you inform them about their child’s situation? Consult with them, involve them,
collaborate with them or empower them and negotiate care together?
Open and honest feedback from parents about how we are performing as healthcare professionals
can be incredibly helpful. If we are brave enough to seek it. And this is what Cincinnati
Children’s Hospital have recently tested. They worked with families so that families
can activate directly a medical response team. In the UK we would normally call it an outreach
service. What they found was when they actually put the information in the hands of the parents
via posters and information from staff, families very infrequently activated an additional
team and when they did it was usually for reasons that were spot on but possibly also
when there had been communication failures too.
This is a piece of work we that did way back in 2006 with families asking them to raise
concerns if they were at all worried when staff hadn’t washed their hands; if they
were concerned about treatments or interventions; if they needed further information and also
if they wanted an additional friend or family member there during consultations they would
be very welcome. This poster and collaboration really helped to shift the culture to bring
parents and professionals together on this agenda.
Anna reminds us however that "sometimes in the face of doctors with their authority and
the power imbalance it can be very hard for parents to speak up" and Deanne reminds us
that parents are not being difficult, they just want the best care.
So how can professionals help? Nicola shares: please can professionals explain how parents
can contribute to their child’s care? We need to have these conversations. Emma talks
about the leadership that was demonstrated by consultant who engaged her in the conversation
and considered her as one of the experts in her daughter’s care. It gave her the confidence
to speak up about concerns. She also highlighted that being valued by staff helped to keep
her sane at a very difficult time when her daughter was unwell.
We also need to hear experiences of people when things don’t go so well. There are
many parents who want to work with the NHS to help improve things. This is Jo and baby
Jasmine, they’ve gathered experiences of families to help us move our services forward
together and professionals agree.
Anit is a consultant paediatrician, he states: "parents are the best monitors that a child
can have, trust them, and ambulate them when possible". Jerusha a children’s nurse agrees:
never underestimate the parents she highlights. And Dr. Ron Daniels, chief executive of the
UK Sepsis Trust clearly states: “parents know when their child is ill; arguably better
than any paediatric early warning school”. So some challenges for us as we go forward.
Have you got a local role model that champions parent voice and involvement? What ideas do
staff and parents have in local area to ensure they are involved? How does your team visibly
demonstrate its commitment to listening and involving parents? Could, even do parents
participate in safety huddles, and is parental input included in a situation, background, assessment
or recommendation or SBAR process? Is parent perspective considered in the Early Warning
Assessment? Are parents actively engaged in medicines administration? There’s a brilliant
website for parents called medicines for children. Are parents invited to participate in staff education
programmes and are they invited to help us learn when things go wrong? And what parent
voice do you have within your governance infrastructure?
Wendy is a mum and she’s a nurse lecturer. She asks us to work with
parents not against them and to hear what they say but also to give them a little bit
of time and space so that we hear what they don’t say as well. It’s Margaret Wheately
that asks us to be brave enough to have a conversation that matters and to take the
time to listen. We need to be courageous but we also need to share power. The more we work
with children, young people and families that we serve giving them information, collaborating
and negotiating the better outcome we’ll have working together.
This is some references that I thought you might be interested in.
“But I told you she was ill” is an article written by a paediatrician about the importance
of listening to a parents voice when their child is unwell.
“Developing and evaluating the success of a family activated medical emergency team”
gives you a bit more information about the work at Cincinnati Children’s Hospital.
And communicating with children in hospital is a great blog that gives really helpful
hints and tips about improving our communication styles as we work forward together. There’s
conversation happening in social media between professionals and also between young people
and families. If you follow me @kathevans2 join in our discussion,
share your ideas, your ideas of best practice and together we can make care safer for the
children, young people and families that we serve. Thank you for listening.