#HealthInfo4Children

Some time ago I blogged on the importance of health information for children NHS The Health Literacy Place | Addressing the health literacy needs of children & young people This week the Patient Information Forum ‪@PiFonline‬ held a conference on this subject and it seems like an appropriate time to revisit the issue.

Why is health information so important? In this 30th anniversary year of the UNCRC it’s worth reminding ourselves that children have the right to high quality information and to be active participants in their care. We know that children are thirsty for knowledge, the challenge is meeting this need with engaging information that meets their developmental stage.

When I was a child I used to get lost in a book, Alice in Wonderland was one of my favourites. The quote …

seemed to confirm that even impossible things could be worked out! Creative, engaging narratives teach us so many life lessons, and creativity is a vital component in developing health information resources to convey important messages in fun engaging ways.

It’s also worth highlighting though that we know there are some children who are more vulnerable, those from BAME groups, those with learning disabilities/autism, those from looked after backgrounds, who are likely to need additional support to access health literacy information.

Some time ago PiF produced this really helpful guide https://pifonline.org.uk/download/file/38/

It explores:

1. Why the right information matters

2. How do we involve CYP?

3. What are the best ways to communicate with CYP?

4. How to produce resources

5. And ideas on what can we learn from others.

It’s worth dipping into!

The PiF conference heard from Professor Lucy Bray @LucyBray9 of Edge Hill University who has developed films with children on ‘Coming into Hospital’ https://www.edgehill.ac.uk/news/2019/02/launch-of-new-comic-book-and-animation-to-help-children-feel-less-worried-about-going-to-hospital/

CICRA ‪@CICRAcharity‬ the charity for children and young people with Crohns and Colitis https://www.cicra.org/ shared films young people had made on endoscopies and other tests that are associated with having this disease.

The Evelina Children’s team shared how they have developed great short films on having an EEG for children and families https://www.evelinalondon.nhs.uk/Home.aspx

The Motor Neurone Association ‪@mndassoc‬ shared the work they’ve developed for 4-10 year olds to help them understand what’s happening when an adult is diagnosed with this disease https://www.mndassociation.org/support-and-information/children-and-young-people/children-aged-four-to-ten/

And the Royal London team shared their work on developing a child centred information approach, information and ‘eye club’ with wrap around services for siblings and families when Retinoblastoma happens https://www.nhs.uk/conditions/retinoblastoma/

We also had an interactive session on using social media to engage children, highlighting some of the challenges and the opportunities it offers. What was clear was that when resources have been developed and invested in, sustained promotion is key if the resources are to have maximum impact.

It’s also worth flagging that the NHS Long term plan asks us to work to improve care for children and young people from 0-25years, it moves us as CYP Professionals from focusing on children (those up to 18), to those who are young adults. Research tells us their brain continues to develop until they are 25, therefore child and young person/young adult health information is essential.

Yet the only way we’ll continue to grow health information resources for and with this population group is by involving children and young people and focusing on what matters to them, working with professionals, educators, writers, ‘creatives’, and the voluntary sector.

I had the pleasure of hearing Dr Kelly Harding ‪@HardingKelli‬ a physician and author of ‘The Rabbit Effect’ at an event this week. Whilst talking about the wonderful physiological impact of kindness in healthcare, shared that for every life bio medical science saves, education saves 8, it was just the affirmation I needed that whilst medicine, treatment pathways etc are vital in managing illness, high quality health information is essential to enhance education, its an area we need to do more on in co-production with those that need it most.

Young Adult Experience #YAExp

This week we’ve been reflecting on transition and young people who are cared for in adult services up to the age of 25, it’s really helpful that the NHS Long term plan raised the bar and asks the NHS to work on improving care for those from 0-25 years of age. Previously Children’s services have focused mostly on the care of young people up to 16, sometimes up to 18, the statutory definition of becoming an adult. It’s helpful that research over the past 20 years or so has confirmed that brain development continues until we’re 25, hence the need to support young adults as they continue their journey to independence, particularly those who have long term health needs.

We know how vulnerable young people can be and the impact great, positive, encouraging, support can have, which is why it’s important we continue to work to improve transition and young adult care. It’s vital children’s and adult services work collaboratively and take a ‘system wide approach’ along with primary care, local authorities, the voluntary sector and schools, colleges, universities and employers.

We know than when young people move into adult services, particularly in inpatient care they are often surrounded by much older people. Only last week we had a 19 year old with Sickle Cell Disease being cared for on a ward between two elderly patients which was far from ideal. Young People can feel intimidated by professionals who they haven’t had a life time of getting to know. Sadly we have now have evidence that health outcomes for young people with long term conditions can deteriorate and result in the worst case scenarios of significant long term complications and untimely death as they disengage with services, if they feel we don’t connect with them.

So what would good transition and young adult experience look like? This model gives us an ambition to aim for…

Young people want honesty and they want us to start preparing them early, they want their GPs to be involved, they want a named point of contact, they want shared care plans with emergency care instructions too. Importantly peers matter, young people want us as health care professionals to connect them with other young people in similar situations.

So at the Trust I’m working at there is wonderful senior leadership on this agenda, the executive team are all supportive of this work. We have 2 fabulous nurse specialists Neil Fletcher and Angela Thompson, funded by the wonderful Roald Dahl Charity who are leading the way, supported by fabulous consultants in Paediatrics and in Adult Medicine. We’re embedding the transition framework ‘Ready, Steady, Go, Hello’ https://www.uhs.nhs.uk/OurServices/Childhealth/TransitiontoadultcareReadySteadyGo/Transitiontoadultcare.aspx (thanks Arvind Nagra ‪@arvnagra‬ & Southampton UHT 😉) where teams don’t have a transition framework in place. The Trust strategy team are helping make this happen. We’re also strengthening our links with primary care, GPS like Helen Jones are testing different models for young people’s clinics. And the numbers of youth workers are growing across the Trust. We’re also been part of the National improvement programme with NHS Improvement/England.

So what do young people from us?

They tell us they want to be welcomed, reached out to, to feel safe and ideally cared for with people of similar ages. They want to be respected and for us to remember it’s scary being a young person using the NHS.

Importantly, we are just as concerned about those young people who ‘crash land’ into adult services as those who transition to adult care from Paediatrics. We need to get it right for all young adults.

Lucy‬ kindly shared her experiences of being a young adult receiving care, please follow her ‪@LucyAlexandria‬ she’s totally inspiring! Huge thanks to all of the amazing young people informing and helping to move this work forward.

Young People’s health is a responsibility of all of us shares the Health Foundation in a recent report https://www.health.org.uk/sites/default/files/upload/publications/2019/HEAJ7109-Young-Peoples-Health-Report-WEB.PDF So we asked our Trust if they’d be allies for and with young people and adults, 220 senior leaders said yes! Will you ask your Trust to do the same? 😉

#WeEatWell19

29/10/19

Dr Zoe tweets as ‪@4AdsthePoet‬ and has challenged us in November to embrace a month of eating well and is encouraging us to share our stories as we join in with #WeEatWell19.

Public Health England has loads of helpful guides to help us with this challenge which can be found here https://www.gov.uk/government/publications/the-eatwell-guide

Healthy eating is also good for the planet https://www.theguardian.com/environment/2019/oct/28/healthy-diet-means-a-healthy-planet-study-shows fruit, vegetables, beans and wholegrains are best for both avoiding disease and protecting the climate and water resources apparently!

Yet in our busy lives it can be hard to be intentional in our healthy eating habits. For me its rather too tempting to reach for a bag of Percy Pigs on my commute home which is something I’m rather partial too! I’m going to try hard to dump this habit! Although it looks like dark chocolate can remain in! https://www.healthline.com/nutrition/7-health-benefits-dark-chocolate thanks @‪KitzingerCelia‬ 😉

So I’m going to dust off my ‘healthy eating’ cook books (I have quite a few, often picked up from various charity shops over the years!) and test some new ideas. I’m also going to try to drink more water, I’m not too good at this so I’ll be adding some slices of lemon 🍋 or a herbal teabag to make it a bit more interesting …. hopefully this will help in reducing my Diet Coke habit too! It will provide an opportunity to put my colourful collection of chilly bottles to good use.

Dr Zoe recognises the challenges of shift working, long commutes, stretched budgets, supporting families, caring for relatives, the list is endless of all the things that mean we revert sometimes to less than healthy choices. Time saving and cost efficient ideas will be valued. I’m going to try to load up a plastic lunch box for the following day each evening too, to reduce the temptation of a mayo laden sarnie when I’m on the move.

So will you join in using the hashtag #WeEatWell19 and post pics of your healthy eating ideas for the month of November? I’m hoping to develop some new habits, pick up some new recipe ideas and dump some old ones!

Oh and did I mention there’s a prize? Dr Zoe is offering a scrummy fruit basket for the best posts over the next 30 days. Bring on Friday 1st November 😉

What’s your story?

27/10/19

Do you recall the Monty Python sketch ‘What have the Romans ever done for us?’ https://www.youtube.com/watch?v=Y7tvauOJMHo&feature=share Save the Children did a take on this when the UK was considering its commitment to international aid, if you haven’t seen it please do watch, it conveys a powerful message really creatively https://youtu.be/pMy8rBxRC6I

The ‘what have you ever done for us ‘ was a challenge used at a meeting I was at this week as we reflected on the importance of sharing team stories to try and ‘close the loop’ on the difference that’s made as we collaborate. So much of our work time is spent at meetings (admittedly some more productive than others) it’s useful to reflect on the difference that’s being made, and to capture and share impact. Yet I wonder if this is easier said than done? Are outcomes and impact always so clear? I’m passionate about the benefits of working together to achieve a shared purpose, I’ve seen repeatedly the value of coming together with others to share ideas, work and as a result is encourages and challenges us to think differently and creatively, uncovering shared solutions. Yet changes don’t happen immediately, they can take time.

The organisation that I’m currently working in has ‘clinical boards’, bringing together senior clinical and managerial leaders from across the Trust. For us this focusing on Children and Young People’s services offered across 3 hospital sites and community services for one of our local boroughs, we have responsibility for making sure that standards are consistent across all our sites and services, setting strategic direction, guiding research and advising on many other areas such as education, role redesign and staff development. We’re currently working on creating ‘our children’s health clinical board story’ and excitingly we’re working across our STP on our shared Children & Young People’s Health and Care Local System story.

I had the pleasure of listening to Dr Nagina Evans ‪@NavinaEvans‬ CEO of East London Foundation Trust (ELFT) who shared her leadership story. She explored the huge benefits and contribution of clinical leadership and the power of us all working together to improving experiences for importantly patients, carers and families, yet along for staff too.

So as I reflect on the week that’s gone, the power of story telling radiates, whether we’re working to improve care, services or experiences let’s keep sharing, twitter and blogging along with more traditional approaches all count.

My Cavell Nurses Trust #10kforNurses story comes to a close this weekend, Cavell is a charity I connect strongly with. Throughout my career my ‘nursing family’ has meant so much, yet I know many struggle, and often things that go on outside work aren’t shared … that’s why the charity’s logo ‘here for nurses’ means so much to me, like an invisible cloak of support, they are an organisation that envelops nurses and midwives. It been a joy to run for them in October, I’ve secured quite a medal collection and wonderfully we’ve raised lots for them https://www.justgiving.com/Kath-Evans9 thank you to everyone who’s donated so generously! The awesome ‘We Communities’ have led the way as always in mobilising so many of us to play a part in this story.

A busy week!.. the power of people…

Goodness last week seemed to whizz by, there was so much happening from starting with a catch up with lovely ‪@BevMatthewsRN‬ from @NHShorizons as we considered how to keep promoting the NHS to young people and grow opportunities for engagement.

Then there was hearing from fabulous @nancywhiskin our Head of volunteering talk about her commitment to ensure meaningful and fulfilling volunteering opportunities in the NHS.

It was also Baby Loss Awareness week and the fabulous ‪@Rosamund1010‬ has been leading a wonderful team touring the sites to promote resources and to signpost the public and staff to help and support when it’s needed.

We also had visits from students and also our local council lead for Children Danny Hassell, ‪@dannyhassell‬ thanks to Neil ‪@nellyfletch71‬ and Angela ‪@angy_wangy1 ‬our Clinical Nurse Specialists for teenagers and young adults, funded by the Marvellous Ronald Dahl Children’s Charity ‪@RoaldDahlFund‬.

There were catch ups about young people entangled in youth violence thanks to Michael Carvers leadership @ldnvrn‬, ongoing work in meeting NICE Guidance in end of life care, strengthening opportunities for our students and future Children’s Nurses to benefit from our incredibly experienced and knowledgeable Clinical Nurse Specialists was also on the agenda. Along with a visit to St George’s to share the good stuff that’s happening across organisations and to plot opportunities for collaboration.

We also continued to think about workforce development and finalise our our response to ‘accidentally dropped babies in hospitals’ Patient Safety Alert https://improvement.nhs.uk/news-alerts/assessment-and-management-of-babies-who-are-accidentally-dropped-in-hospital/

Yet it was Friday afternoon that offered a moment to pause with women of the Ascend NHS Leadership Academy that allowed some personal time for reflection about priorities and this was really valued, as we met at Mile End it was a lovely reason to treat ourselves to Cronuts which were delicious!

They were a perfect element to the carb loading for the Yorkshire Marathon which was my 31st. Team #NHS1000miles and #10kforNurses for @CavellTrust came together and sustained the fund raising for Nurses and Midwives facing hardship. It was a

weekend that certainly demonstrated Twitter at its very best! We were all brought together by a passion to make a difference.

Here are some of us along with a very tired #CharlieDog at the end of the Yorkshire Marathon on Sunday afternoon. It was certainly a weekend of fun and friendship!

So as I head into the week ahead, I’m wondering if there was a theme, a golden thread that ran throughout last week? Perhaps it’s the impact of people… people doing their thing, going above and beyond, stretching themselves to do more to support each other and reach across organisational and geographical bounties to keep making things better for others?

#Disruptyourfeed…. valuing cognitive diversity

12/10/19

Have you followed 4 new people on social media this week? @thefemale_lead an education charity, highlighted the impact of positive disruption on our social media feeds. Whilst it specifically looked at the influence this can have on young women I think there are lessons for us all, suggesting diversification of our social media activity can encourage us to think differently by offering new perspectives. This short you-tube clip gives an overview https://youtu.be/ptr-VoXDMQ8 and there’s more information too at Transform your feed with new and inspiring profiles – The Female Lead.

The value of diverse perspectives is also the theme of @MatthewSyed’s book ‘Rebel ideas, the power of diverse thinking’ which has brightened my commute this week. Matthew suggests that all too often we’re blinkered by the #echochambers and #informationbubbles which support our opinions. Whilst these are comfortable, it can also be dangerous, as numerous situations in healthcare have proved to us over the years. Seeking and valuing objective perspectives from teams who come from a variety of backgrounds, are clearly significant assets in growing ‘cognitive diversity’, providing I’d suggest, there’s a culture that encourages people to speak up, and vitally supporting people when they do so.

I know I need to repeatedly remind myself to ‘lean into’ diverse thinking, to seek it out, encourage it and take action….

happy weekending 😉

PS for some diverse thinking why not follow…

‪@MatthewSyedTeam‬

‪@matthewsyed‬

‪@the_female_lead ‬

‪@TerriApter‬

‘Play for all’ and it’s not just about Children, us adults are playing for Cavell Nurses Trust this Oct #10kforNurses 😉

It’s National Play in Hospital Week from Monday 7th–12th October (more info at http://www.starlight.org.uk/npihw), organised by the National Association of Health Play Specialists (@NAHPS) and supported by Starlight Children’s Foundation (@starlight_uk) a national charity which provides play and distraction services in hospitals and hospices across the UK.

The week of putting play in the spotlight gives us all an opportunity to celebrate the difference play makes in healthcare. Across the country there’ll be play related activities, Twitter will no doubt be alive with pictures! Make sure you share what you are up to on social media and use #Playinhospitalweek #PIHW and tweet @starlight_uk @nahpsofficial too! Why not tag @NHSEngland @NHSImprovement and your local Executives and CCGs?

This year there’s a focus on ensuring play is fully inclusive and that children who have additional needs perhaps related to learning or physical needs, are included too, hence this year’s title ‘Play for all’.

It was the famous ‘John Bowlby’ who said ‘Play is the business of childhood’ and we all know and accept universally now that from the earliest age, play helps children to learn, to make friends and develop relationships, and to have fun. With nearly 49,000 children and young people in the UK living with a life-limiting or life-threatening condition and 5,500 new diagnoses each year, the need for play and entertainment services for children in hospitals and healthcare has never been greater.

Research has highlighted the importance of play in hospital, both in preparing children for treatment, providing ways for them to work through anxieties, fears and importantly deal with their experiences. When children and young people are admitted to hospital they are often at their most vulnerable. Play helps them to adjust to a potentially stressful situation, it helps children & young people to understand why they are in hospital and what will happen; cope with illness and treatment; regain confidence, grow independence and self-esteem; express their feelings and recovery more quickly. Play also creates an environment where stress and anxiety are reduced; it encourages family involvement and it can aid in assessment and diagnosis. It’s a bit of a wonder drug really!

And of course play isn’t just for children as Alison Tonkin (@TonkinAlison) a wonderful play champion reminds me regularly. Us adults like playing too! October provides us with perfect excuse as we play at doing 10k hikes, runs, cycles, bake sales etc and raising money for Cavell Nurses Trust (@CavellTrust). Edith Cavell was a Nurse who cared for soldiers involved in 1st world war, she was tried for treason as she cared for those on both sides and was horrifically shot. The charity established in her name supports nurses, midwives and healthcare assistants when hardship strikes. Nurses too face poverty, ill health and complex social circumstances such as domestic violence. The charity can be a lifeline, providing a listening ear when perhaps it’s difficult to talk to managers about circumstances outside work. The support from Cavell also means that nurses and midwives can get back to work more quickly too, which can be helpful for everyone.

So each October the Cavell Nurses Trust with the fabulous ‘We communities’ run #10kforNurses to raise awareness about their awesome work, raise some funds and (the bit I enjoy the most) have fun in what ever way suits by playing! Do get involved if you can https://www.cavellnursestrust.org/fundraise/ or just feel free to donate the cost of a cup of coffee to encourage me to bank those miles for nurses https://www.justgiving.com/fundraising/kath-evans9?utm_campaign=pfp-share&utm_content=Kath-Evans9&utm_medium=fundraisingpage&utm_source=Facebook