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First 100 days and a pandemic

Following his appointment earlier this year, CEO Rami Okasha has written a blog on his first 100 days in post and how we continue to support children with life shortening conditions and their families during the coronavirus pandemic.

I have the best job in the world. My first 100 days as Chief Executive at CHAS have flown past, even though life as we knew it last February seems like a very far-away place.

In hospice, home and hospital, we support children who die young. Children’s palliative care is all about striving to make things possible – in the face of overwhelming odds – for families going through the hardest time. Our staff and volunteers are the most dedicated and creative people you could meet.

Knowing your child, brother or sister is going to die young might seem unimaginable. It’s the hidden place in our minds no one wants to go. But for thousands, this is their daily reality. And now this virus has made everything so much harder.

Some families are shielding because their child has a suppressed immune system. Others can go out, but leaving the house, even for a short trip, means packing up a lot of essential kit and equipment. Some families we support live in poverty, so shopping isn’t just hard, it’s impossible. Others have one child who needs constant care, and lonely siblings who don’t get much time with an exhausted parent. Some families living in a flat might not have been able to get fresh air outside for weeks. And all of that is underpinned by knowing your child could deteriorate at any time.

For children approaching the end of life, the worries and decisions are greater still and even more terrifying. What happens if I fall ill with coronavirus right now? If they are in hospital, who will be with them? Will the doctors and nurses I know be called away for other emergencies? Will there be pain? Will I be able to get to the hospice? Will my child be able to die where we planned? What will the funeral be like?

None have an easy answer. CHAS is a team of doctors, nurses, pharmacists, social workers, play therapists, physiotherapists, housekeepers, chaplains, counsellors, volunteers, fundraisers, cooks, receptionists, gardeners, maintenance engineers, administrators, and many more. Together we support families through the terrifying heartbreak of knowing their child is going to die young. That makes leading the team a great responsibility. I’d like to thank each and every member of that team for their work.

Over the last 100 days, our burning ambition to support families hasn’t changed. But circumstances have changed beyond all recognition. Very quickly, we knew we needed to prioritise the hospices for crisis and end-of-life care, whilst reducing the risk of transmission and practicing social distancing. A visit to a CHAS hospice feels different right now and many families simply can’t be there for the short breaks that are so vital to them.

We’ve stretched the boundaries of the possible. Our staff are working even more closely with NHS colleagues to sustain packages of care. That prevents children going into hospital when they don’t need to. Our hospice and at home nurses are working as one team to get children to the right place.

Two stories stand out. We are helping a care experienced young child who has been in hospital for five years; five years to get to their new permanent home. In another case, we’ve supported a young person to leave hospital after COVID-19 and get back to their own home via a short stay in the hospice. CHAS staff visit multiple times a day, and are training local authority care staff in this person’s particular needs. Without this, they’d be in a hospital or perhaps a care home. Their mum spoke of them “beaming” when they got home.

We are also starting up completely new services. At the end of March, CHAS launched the UK’s first virtual children’s hospice. If a child can’t come to the hospice, we are taking the hospice to them. In the space of 10 days, we put in place the tech and clinical governance processes to provide virtual support so that CHAS families could connect with nurses, doctors, pharmacists and others via video chat from the safely of their own home. The virtual children's hospice covers Scotland. From Shetland to Stranraer, Stornoway to Stonehaven.

Through the virtual children’s hospice, doctors and pharmacists give advice about complex symptoms. Nurses make kindness calls to triage a family's need for help. Packs arrive in the post with activities for little hands and minds (this week’s prize for most inventive goes to a macaroni-making kit!). There are online videos with songs and play ideas. Jackanory stories happen over Zoom; I’m doing one soon to mark Volunteers’ Week and secretly hoping it’s Room on the Broom. Children and siblings open letters from volunteers with fun envelopes and sparkly stationary. Bereavement care happens online. Specially-trained volunteers make friendship calls to parents who are isolated. One dad said the call from CHAS was the first person he had spoken to for weeks.

Working with others makes everything more powerful. With Hearts and Minds, we bring Clowndoctors into children’s living rooms by Skype. With Nordorff Robbins, we offer music therapy over the internet. With councils and the NHS, we offer seamless care. Many organisations have shown kindness to CHAS. Deliveries of Personal Protective Equipment, donations of food for families struggling, and even chocolates and pizza have all arrived at the hospices without asking. People have been so supportive of CHAS. We are so very grateful.

CHAS doesn’t charge for any of its services, but our works costs a lot of money. People have been staggeringly generous during this crisis and I cannot thank you enough for continuing to support children and families during the hardest of times. But, most of our fundraising events have been cancelled or postponed. Charity shops are closed, and we don’t know when they can open again. Keeping the charity sustainable and in a strong position is essential, so a lot of my time is focused on supporting our fundraising and finance teams to do that.

So what have I learnt over these strange weeks? Like every new chief executive, I had a list of things I wanted to achieve in my first 100 days. That’s long torn up now, the pandemic crisis has changed everything and there won’t be a going back - only a going forward, together, with new skills and knowledge.

I’ve learnt more about my organisation, my colleagues, and the needs of children and families, and far more quickly than I thought.

I’ve learnt the importance of a style of leadership that creates the conditions for others to excel, innovate, test and change at tremendous pace – even when, deep down, they are worried.

I’ve learnt more about working remotely, how it suits some but challenges others, and how it presents intriguing opportunities for whatever is next.

I’ve learnt about the value of communicating clearly and openly with the families we support.

When the immediate crisis is over, and we settle into the new way of being, I want families to say “CHAS was there for us”. So most importantly, I’ve learned very clearly about the difference really well-run services make to people’s lives.

Nothing in children’s palliative care is easy. Our work is located at the hard end of hard things. But through working diligently and creatively, and with leadership and love, we can help families treasure the time they have together – no matter how short it is or how scary this pandemic is.

#KeepTheJoyAlive @ramiokasha

If you want to talk to someone about your own situation or find out more about our services, please get in touch: