Hearing from bereaved families

How we care for babies, children and young people at death, and the care we provide for families remains etched in memories forever. Parents including Chezelle Craig @whatsinakiss, Adam Bojelian’s @4AdsthePoet parents and Joanne Hughes @Mothers_Inst_UK, amongst many others have taught me so much over the years and I am so grateful to them all.

Seeking out parent insights is important in making care as good as it can be in such awful circumstances. Leigh @leighakendall mum to Hugo repeatedly reminds me that families want to help improve things for others.

Back in 2017 Jane @JbereavementUK a bereavement midwife at Imperial and Donna Ockenden @DOckendenLtd led work with SANDs and the London Maternity Network to compile the Maternity Bereavement Experience Measure (MBEM) here’s a blog about the work we did https://www.england.nhs.uk/blog/we-must-listen-to-parents-after-their-darkest-hour/ the resource can be found here http://www.londonscn.nhs.uk/wp-content/uploads/2017/06/mat-bereavement-mbem-062017.pdf

It was Ronny Chenug @CheungRonny a Paediatrician who rightly challenged us and said that if we had a suite of agreed sensitively tested questions to use when bereavement happens in maternity care, it would be helpful to have a suite of agreed questions for parents who experienced child bereavement too. SANDs once again supported the work and this week saw the publication of the Child Bereavement Experience Measure by the Healthy London Partnership Team @HealthyLDN, it can be found here https://www.healthylondon.org/our-work/children-young-people/child-death-review-programme/gathering-feedback-from-bereaved-families-and-carers/

Importantly families, healthcare professionals, the voluntary sector and staff working in roles supporting continuous improvement, have all worked collaboratively to compile these resources for us to use flexibly to gather feedback and use it in commissioning and delivery of services.

Complementing this work this week’s commutes have whizzed by as I’ve listened to Dr Matt Morgan’s @dr_mattmorgan welsh accent reading his reflections of working with people, ‘Critical’ https://www.audible.co.uk/pd/Critical-Audiobook/1471180417.

Lots of his reflections, including the long corridors and respiratory wards of Llandough Hospital resonated as it’s where I did my training back in the late 1980s. Yet it was Matt’s reflection on the work of Rhian Mannings @2wishupon http://www.2wishuponastar.org/ to create environments in hospitals where life changing news can be shared, that made my ears tune in even more intently. Rhian shared that her world changed in 2012 when her 1 year old baby son, George died, followed by the death of her husband Paul, 5 days later. When her son died Rhian paced the corridors looking for a quiet office to spend quiet time with her son who had died, there was no room allocated/created for this. Rhian’s charity now creates undisturbed spaces in hospitals for news to be shared and for families to absorb what’s ahead, in some shape or form.

I had the privilege of meeting Rhian as NHS England worked to improve Child Death processes https://www.gov.uk/government/publications/child-death-review-statutory-and-operational-guidance-england. Rhian’s strength and determination that her work would make a difference for other families infected us all that day. Her presence was unforgettable, please do follow and support the work of her charity.

The work at NHS England with the Department for Health and Social care restructuring Child Death processes, led to the Lullably Trust @LullabyTrust creating an information resource for families when a child dies http://https//www.lullabytrust.org.uk/bereavement-support/when-a-baby-dies/

The final words this week though goes to thanking the team at Child Bereavement UK as they celebrate 25years of rebuilding lives when awful things happen. It’s clear that it’s only when we all work together families, professionals, the public and the voluntary sector that we can really make a difference in people’s lives.

Social Media, my 8 year twitter journey….

If you’re reading this thinking I know nothing about social media, can I signpost you to these great resources on using social media from the ‘We Communities’ thanks to @agencynurse http://wecommunities.org/resources/twitterversity its useful for novices and experts!

I began my social media journey back in December 2011 (massive thanks to @helensadler4 @tallgirlwgc) when I was working at the NHS Institute for Innovation and Improvement. The programme I was seconded to, from my post as Lead Nurse for Children in East and North Hertfordshire was focusing on testing interventions to shift care closer to home, when safe and appropriate to do so. One of the work-streams connected us to education, and meant we worked with children and young people to increase their knowledge of the range of services available including self care, pharmacies, urgent care, GPs, as well as Accident and Emergency Departments. I knew I needed to spread the word about the programme and the evolving co-produced lesson plans so that we could strengthen connections been health and education and aid dissemination and spread. Twitter seemed to provide a free tool without the hassles of formal publication, it was convenient and accessible, and it worked a treat. The secondary school resources (since updated https://www.england.nhs.uk/participation/learning/schools-resources/ ) and ‘Monkey Wellbeing’ primary school packs spread across the country https://www.monkeywellbeing.com/resources/schools-resources/ as part of the improving children and young people’s emergency care programme, shared in these documents https://www.rcem.ac.uk/docs/Paediatric%20EM%20Guidance/CEM7226-Focus-On-Children-Emergency–Urgent-Care-Pathways—March-2010.pdf & https://www.rcem.ac.uk/docs/Paediatric%20EM%20Guidance/11.%20A%20Whole%20System%20Approach%20to%20Improving%20Emergency%20and%20Urgent%20Care%20for%20CYP.pdf

It was also @HelenBevan Chief of Transformation at the NHS Institute who was running a staff gathering at the NHS Institute who gave me a real nudge when she said how great to was to see me tweeting and how much she enjoyed my tweets in front of over 100 members of staff. It was just the sprinkle of fairy dust positivity I needed to encourage me on my online journey.

Another important element was doing some work with @SaveChildrenUK. As a charity they had a public engagement strategy that I’d never encountered in the NHS, back in 2012 they were way ahead of us and they encouraged me to tweet about my trip to Liberia which I did with them, and they also encouraged me to guest blog https://blogs.savethechildren.org.uk/2014/06/newborns-a-promise-kept-a-plan-to-save-babies-agreed/.

The thing that stood out from my early social media experience was having a purpose, I had a reason to tweet, this connection was important.

Another element that’s been important is having a community of like minded people to tweet with. Communities that I’m part of include #EarlyRisersClub the #WeActiveChallenge (did I mention the #NursesActive won in 2019), #NHS1000miles established for #NHS70 http://www.wecommunities.org/blogs/3443 and more recently #CYPBartsHealth. These hashtags are a bit like ‘filing cabinets’ says @spencer_sian capturing tweets around a specific subject. All these communities have have supported connections around the subjects, or issues, that matter most to me.

Yet I do have a health warning ⚠️ once you ‘find your tribe’ don’t forget to reach out and burst your bubble to find diverse opposing views to challenge and grow thinking, follow freely, stay curious, be aware of ‘broadcasters’ (typically CCG accounts that pump out information and don’t engage), social media isn’t called ‘social’ for nothing … you get what you give …

I’d also say life it too short for trolls and pathological negativity, we all have tough days and last thing we need is a dose of doom and gloom from social media, reality and constructive challenge of course, but not nastiness, there’s a ‘block’ and an off button don’t be afraid to use them.

So what are some top tweeting tips? Here are some suggestions from @hepworth_becky 

  • ‘Be engaging  talk to people, talk to different people, make it a rule that you’ll talk to new people each week and ask questions
  • Be reflective – write a blog, comment on someone else’s blog, write a guest blog for someone else
  • Be twitter savvy – use pictures, share links, join in a twitter chat, don’t just retweet
  • Be human – be you, share stuff that interests you
  • Be consistent – whatever you do, do it regularly
  • Be a ‘10 minutes a day’ advocate – 10 quality minutes spent on social media is 10 mins well spent.’

There’s some more insight on twittering here in a blog a number of us collaborated on http://www.wecommunities.org/blogs/2307

Using social media has led me to establishing my own blog https://kathevans.com/ and also to using UK Audible, which has increased the volume of my reading significantly https://kathevans.com/2019/07/18/my-favourite-books-of-2019/

Social media has certainly helped me to

1. Challenge myself to think differently

2. Seek out and gather wisdom

3. Receive encouragement

4. Have encouragement to keep going

5. See joy and fun in an issue

6. Seek out inspiration to be and do better

7. See role models in action, and see them survive and flourish when things are tough.

But perhaps the most useful reflection comes from a tweet earlier this week @paularich1977, Paula reinforced that ultimately social media is all about positive human connections, more social, less media, and that’s something we should never forget ….

Black box thinking 🤔 World Patient Safety Day #AskAboutAsthma

My audible book listening this week has been revisiting Matthew Syed’s book ‘Black box thinking’. Black boxes are electronic recording devices found in aircraft and support the investigation of incidents. Something I didn’t know was that they are actually bright orange, rather than being black to aid their recovery. What these boxes contain are clues, insights into what’s happened to ensure learning is extracted from situations and used to make changes to prevent incidents happening again. Whilst we don’t have the luxury of ‘black boxes’ in healthcare, what we do have is access to rich data and insight from a range of sources that, when shared openly, can help us get better at using insight to drive continuous improvement in healthcare.

I desperately want the care given to babies, children and young people to be of the highest quality, and to be consistently safe, appropriate and child centred, the reality is though there are always opportunities to learn and improve on the care we give. Throughout my career in nursing there are many examples where I’ve learnt so much from mistakes, bringing these to light, discussing the issues that contributed, then planning changes to increase learning, vitally help to prevent duplication of incidents.

The culture in which we operate is so influential in creating openness so that incidents are acknowledged, shared and learnt from. Of course nobody wants mistakes to happen, it’s not what we came into healthcare for, our aim is provide the best, most effective care in a timely manner, but we have to be courageous enough to share information and learning, in order to move things on. Supportive, encouraging cultures are vital for this.

Syed reflects on how success happens, he shares important lessons on how to expedite progress through learning and creativity. Practice of our skills is critical, the more we practice, the better we get and the more we learn. Syed challenges us to embrace failure on this journey, linking failure and success inextricably.

Professor Tony Warne @tonywarne in his blog ‘Safety first’ http://tonywarne.blogspot.com/2019/09/safety-first-is-always-good-strategy.html reflects on @NHSImprovement’s recent publication of the ‘The NHS Patient Strategy’ https://improvement.nhs.uk/documents/5472/190708_Patient_Safety_Strategy_for_website_v4.pdf

The foreword talks of achieving a ‘collective intent’ to secure commitment to improve the way we learn, treat staff and involve patients.

The strategy also highlights the importance of working with patient safety partners to drive improvements, the role of children, young people and families can be powerful, as they are such strong and effective advocates and drivers of change.

The other role the strategy proposes is a local patient safety specialist, I think there’s real potential to grow the Children and Young People’s patient safety specialist role and create a network of these post holders to share challenges and solutions.

The 17th September will see Patient Safety highlighted as a global health priority marking the first-ever World Patient Safety Day, led by the World Health Organisation (WHO). They will launch a global campaign to create awareness of patient safety and urge people to show their commitment to making healthcare safer https://www.who.int/campaigns/world-patient-safety-day/2019

So what are the issues we need to focus on in child health? Medicines management? I wonder if we can be using the Medicines for Children Resource https://www.medicinesforchildren.org.uk/ more? Pressure Ulcers? this remains a challenge in neonatal care http://nhs.stopthepressure.co.uk/ Early identification of deteriorating patients? Scotland have led the way on this http://www.clinicalguidelines.scot.nhs.uk/ggc-paediatric-guidelines/ggc-guidelines/surgery/paediatric-early-warning-score-pews/ and work by NHS England will follow. Identification of correct patients for procedures?

Something that’s having a real focus in London is ‘week 38’ the #AskaboutAsthma campaign, being supported by Asthma Nurse Specialists and the Healthy London Partnership Team @HealthyLDN. They are keen to get families and professionals involved in improving the care of children with Asthma, there’s lots of helpful resources that can be used by teams beyond London too https://www.healthylondon.org/our-work/children-young-people/asthma/ Do get involved and support the campaign.

It would be good to know what your priorities are as we all work to make care as consistently safe as possible. Let’s keep learning and sharing together.

Recharging, the benefits of taking time out, friendship and knowing our heart age..

I’m just coming to the end of having two weeks off work on annual leave and it’s provided me with a bit of down time, space to get some home stuff done, catch up with old friends, see family, fit in a bit of extra exercise for the August #WeActiveChallenge supporting team #NursesActive and generally just ‘breathe’. Research suggests holidays can help to lower our blood pressure, improve our sleep quality and increase our resilience to stress and hopefully a change of pace means we’re even more productive on our return.

One of the things I’ve particularly enjoyed is catching up with friends. Friendships and social networks are hugely important in promoting wellbeing https://www.goodhousekeeping.com/health/a28200092/importance-of-friendship they can lower stress, encourage us to engage in exercise, keep us alert and generally make us feel better. This summer I’ve caught up with friends I worked with over 25 years ago at the Whittington Hospital in North London, Millie a Play Specialist, along with Jo and Ali, who are Nurses, we’d all worked on Ifor Children’s Ward together. As youngsters in our 20’s then, we cared for children and their families in some very tough circumstances and we all supported each other through the emotionally hard, as well as the good times. The NHS is full of ‘friendship teams’ like ours, people connecting and willing each other on, as well as opening doors to new experiences for each other. All of these women have created indelible memories in my life and as Millie reflected so wonderfully ‘when we get together it feels like we’ve never been apart’, this was us enjoying the early morning sunshine with a coffee!!

Perhaps the friendships being part of #teamNHS brings is something we should celebrate more? Who are your NHS friendship groups?

Whilst holidays provide breathing space there’s the challenge of the return to work that follows. I saw this infographic on twitter this week which I think came via @BevMatthewsRN and @leighakendall, done by @scriberian and Mind https://www.mind.org.uk/. It offers some great practical wellbeing tips as we get going into this Autumn term. The importance of breaks, taking up group activities, working appropriate hours, not letting work spill over into personal time, being more organised through list creation and making the most of our down time, all feature.

Whether you’ve had a holiday or are about to head off, I hope you’ve had time to reflect on work patterns and plan a strategy for the autumn term. It’s so important to pace ourselves as #teamNHS if we’ve to make our sustained contribution, and the only people that can make this a reality is ourself.

So I’m challenging myself on how I’ll create a positive work/life balance going forward into September. Being part of the #WeActiveChallenge for 2019 has been a huge amount of fun, we’ve all supported each other to increase our levels of physical activity which are so often neglected when life gets busy. It was @JamieWaterall of @PHE_uk who reminded us this week that our heart age is an important factor in our wellbeing. Knowing our heart age and taking action is something we can all do and take action on, this overview from the BBC has useful info and relevant links https://www.bbc.com/news/health-45395576 do work out yours.

So as I head back to work next week, armed with my ‘heart age’ (49 if you’re asking 😉) and refreshed by catching up with old friends, I’ll be trying to maintain balance and promoting my wellbeing to ensure I can care for others.

Bring on the final week of #NursesActive

It’s hard to believe we’re heading towards the final week of the #WeActiveChallenge 2019 http://www.wecommunities.org/blogs/3483

It’s been going for 5 years now and it was the brain child of @jkfillingham of the @weAHPs community.

It’s a wonderful challenge once a year in the month of August to encourage us all to be a bit more active, and the competitive spirit of the Health professions battling it out for top place is fabulous! Usually the AHPs smash it, but this year it will be the year of the Nurses 😉👍 (no pressure, lets just make sure we have the right hashtag! #NursesActive plural 🤣). The wonderful @wilsoncat and @BevMatthewsRN have been having evening ‘check ins’ via DMs to assess our status and introduce new challenges such as ‘planking’ and headstands which has been a hit!

@finniejax even got her self in the local paper http://www.swlondoner.co.uk/swl-august-edition-2019/ for her planking efforts!

Trusts that have really embraced the challenge include Imperial, ULCH, Barts & East & North Herts, and there are many others too … the Salford AHPs and the Irish dancing was a real treat!! thank you all for setting the pace 🌟

Of course it always helps to get a badge along the way too and I’m rather delighted to have got my gold one! Check out your badge status via the ‘we gizmos’ along with all the activity at http://www.wegizmos.co.uk/Leaderboards/Show/7c485d90-6617-4085-aa62-49c2b879c128

We’re also encouraging team #NursesActive to give ParkRun a go on 24/8, we’re hoping to flood twitter with #NursesActive pics on Saturday 😉

if you’re still yet to try ParkRun why not google your local one, register to get a bar code and join in the fun 😉 more details here https://www.parkrun.org.uk/ Walking is totally allowed!

Huge thanks to Trudy @trudyward8 who is going to give ParkRun a go for the first time this Saturday!

Finally a MASSIVE thanks to #teamChinn that make all of this possible! Tree @AgencyNurse & Nick @NRCUK together, are the glue of this community, they are AWESOME in creating positive staff experiences and wellbeing, which in turn creates great patient experiences and improved outcomes, and that’s what we’re all about 😉

Health inequalities and the impact of racism on child health, kindness and advocacy

Health inequities is an issue I keep returning to in this blog. Perhaps it’s the complexity and vastness of addressing the economic, political, and social challenges, including racism that impact so heavily on health outcomes that frustrate me on a seemingly daily basis currently at the moment.

The American Academy of Pediatrics @AmerAcadPeds this week published a statement on the impact of racism on child health, I think there’s much we can take note of and challenge ourselves on here in the UK https://pediatrics.aappublications.org/content/144/2/e20191765

The AAP share that racism has a profound impact on the health status of children, adolescents, emerging adults, and their families. Whilst they acknowledge progress has been made toward racial equality and equity, the evidence to support the continued negative impact of racism on health and well-being through implicit and explicit biases, institutional structures, and interpersonal relationships still exists, I’d suggest this certainly isn’t unique to the USA.

Through discussing these issues openly they suggest health professionals can proactively engage in strategies to optimize clinical care, workforce development, professional education, systems engagement, and research in a manner designed to reduce the health effects of structural, personally mediated, and internalized racism and as a result improve the health and well-being of all children, adolescents, emerging adults, and their families. If we fail to address this, health inequalities will remain.

The New York Times also covered this https://www.nytimes.com/2019/08/12/well/family/the-impact-of-racism-on-childrens-health.html and in a interview with a paediatrician they shared that clinical settings need to make everyone feel explicitly welcome, with images of diverse families up on the wall and with the capacity to provide care in different languages. The reception families get at the front desk, who is staffing it, as well as who is seeing patients all play a part. Toys, dolls, books, videos should they encourage all be multicultural.

They go on to state that ‘Our diverse pediatric workforce is critically important to begin untangling the thread of racism sewn through the fabric of society and affecting the health of pediatric populations.’

As Child Health professionals our challenge is to examine and acknowledge our own biases, seek out, embrace and advocate for innovative policies and cross-sector partnerships designed to improve medical, economic, environmental, housing, judicial, and educational equity for optimal child, adolescent, and emerging adult developmental outcomes. It’s an issue I think we can become more activated and engaged with.

As I continue to immerse myself back into being in a provider organisation, seeing the societal challenges faced by children and young people, advocating for and with those in our local communities seems increasingly important.

I met Lillian of @PinPointIncorp, an amazing not for profit organisation based in Walthamstow this week. Lillian shared feedback from a vulnerable young person who completed one of her programmes, on being asked what have you got out of this bike mechanics course, they wrote ‘kindness’, it was the first time they’d experienced such kindness …. it was the kindness rather than the mechanical skills that had had the greatest impact on that young person.

And I’ve just finished listening to the David Nott’s ‘War Doctor’ whose advocacy is inspiring, I’d really recommend listening on @audibleuk and do follow the difference the @NottFoundation is making.

So my reflections this week include acknowledging and tackling racism, the power of kindness and the impact of advocacy….

…. I’ve much to ponder on….

Stop apologising, start thanking… #ForcesforChange

There was a tweet from @kennygibsonnhs that captured my imagination this week it included a visual (NB Tweets with images have far more impact 😉) ... it suggested we should stop apologising and start thanking. It was something that resonated with me, here are some ideas for us to try.

Next time I’m late for a meeting, due to train hassles or trying to fit too much into a day, I’m going to thank those on the receiving end for being so patient!

I wonder if the women profiled in Vogue this month have this issue?

Vogue isn’t my usual magazine of choice but this issue is rather special as it profiles 15 women making a difference in world and it’s been guest edited by Megan, HRH Duchess of Sussex here’s an overview https://twitter.com/jinajaycasting/status/1159856011957723136?s=21 and a summary of those profiled https://www.vogue.co.uk/article/meghan-markle-guest-editor-september-issue-british-vogue-2019

If you haven’t got a copy yet… DO… its AWESOME the photography is beautiful and totally inclusive, HRH The Duchess of Sussex writes in her guest editorial ‘and amongst all of these strong women on the cover, a mirror – a space for you, the reader, to see yourself. Because you too are part of this collective’. Jane @NHS_Jane the awesome woman who co-ordinated the ASCEND Women’s Leadership programme for @NHSLLA with @drgemmamunro and creator of @quiet_the_hive showed us how it’s done…

Hunt down a copy, at £3.99 it’s a bargain, although you may end up feeling like you’ve found a ‘golden ticket 🎫 ‘ as Charlie did in Roald Dahl’s ‘Charlie and the Chocolate Factory’ as copies in newsagents are understandably elusive.

Megan calls out women from across the world who are making a difference, such as Jacinda Arden…

Brene Brown….

Sinéad Burke, diversity advocate and lecturer highlights that ”We need to constantly be asking what voices are not in the world, which perspectives are not being considered, and make sure that change occurs with as much intersectionality as possible.” I’m in awe of her gracefulness and fab outfit!

Michelle O’bama @MichelleObama writes to Megan … dip in to find out more 😉

And there’s poetry too, the ‘Beach’ asks us all to be ourselves, a reminder it’s ok to ‘just be…’

Perhaps one women I’d add to Megan’s list is Edith Edgar, I’ve just finished listening to ‘The Choice’ on @AudibleUk https://www.nytimes.com/2017/10/06/books/review/the-choice-edith-eva-eger-auschwitz-memoir.html Its a powerful narrative that shares the horrors of the Holocaust. She shares how her experiences in Auschwitz, even though it claimed her parents, didn’t break Edith. Her experiences helped her appreciate and live life with strength and remarkable resilience. Edith shares ‘We have the capacity to hate and the capacity to love. Which one we reach for,” she writes, “is up to us.” As she comments throughout the book, it’s our choice. The New York Times shares ‘Eger’s book is a triumph, and should be read by all who care about both their inner freedom and the future of humanity.’ I think it should be a compulsory read on the GCSE English curriculum.

Melinda Gates also launched #Equalitycantwait this week highlighting it will horrifyingly take 208 years for women to be equal to men in the USA https://twitter.com/melindagates/status/1158712902586519553?s=21 are we further ahead in the UK I wonder?

Whilst all of these women are in the public eye, I’m surrounded by amazing women in work, at home and in my community who are making a difference day in day, who often get on with ‘doing the doing’ often quietly and very effectively. So my reflections this week? Let’s stop apologising and start thanking, let’s take our place in the mirror, challenge inequalities, and embrace the fact that we all have choices.