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Confusion, collaboration and community: a day in the life of a children’s hospice CEO

Dee Sissons, CEO of Rainbows, shares how she has been coping with the coronavirus crisis.

Coronavirus: on any one day, at any moment I can feel: confused, proud, frightened, proud, responsible, proud, sad, proud, worried, proud, emotional, proud, overwhelmed, proud, committed, proud.

Like everyone I am frightened. Frightened for all the children and young people, and their families that Rainbows Hospice supports. Frightened for the staff. Frightened for myself and my family (including my grand-daughter due to be born in May). Coronavirus overwhelms my working day and as CEO I have to hold my fears and anticipate, prevent and mitigate making sure that Rainbows is in the best possible place to recover following the crisis.

Rainbows cares for some of our most vulnerable children across the East Midlands. Over the years, communities large and small, corporates, community groups, school children and individuals have made sure that we have the money we need to make a real difference to those children who have a life-limiting illness or sadly who die. We now want to give something back to those communities.

I am immensely proud of all my staff who have pulled together plans to make sure we are able to continue offering support to those children who are at the end of life, or who are experiencing difficult and complex symptoms. At the same time, we are working with and supporting hospitals so that they have the resources they need to offer Intensive Care beds for those adults and children who will become unwell with coronavirus.  

I am proud of our brave and courageous staff who have had to make very difficult decisions. At Rainbows we really understand how important short-breaks are to our families and we continued to offer our short-breaks/respite as long as we could. However, in order to make sure our children are safe we have had to temporarily stop short-breaks. Our Family Support team are embracing new ways of working and using IT to offer remote support to these children and their families.

The sense of responsibility has never felt so real. £6.2 million: the amount of money we need to keep our doors open; 350: the number of families we support. 173: the number of staff we employ. 400: the number of volunteers that help us from shops to gardening, cleaning to car-parking, reception to care and many more I will have missed.

I am proud that over the years Rainbows has been financially prudent and well managed and that at the moment we can continue to provide services and there is not an immediate risk to staff and their income. However, our ability to fundraise is restricted and given the widespread economic impact of coronavirus we are carefully monitoring our cash flow and income.

I worry what the financial impact might be should the crisis last months not weeks and find myself waking up early in the morning. We will need extra support to recover at a time when our communities are worried about money. Will Rainbows get the timely, appropriate, financial support they need from the government?  How will all this impact on those children and families that depend on Rainbows for the on-going support they need?

I am proud of all the staff who work tirelessly to raise funds, who now are in their own homes (probably juggling work and childcare) analysing information, staying in contact with all our supporters and developing new creative fundraising ideas ready to go. Watch this space.

We cannot underestimate the emotional impact that coronavirus has on our mental health and wellbeing, and we need to be mindful of those needs now and more importantly in the future. It’s telling that even though our coronavirus preparations are all about process my blog focuses on people.

Rainbows is all about people and it’s the commitment of staff, volunteers and families that leaves me feeling emotional.

To those staff working from home who do everything they can to sneak back in – stay strong we are more than a building! To local businesses who have donated what they can as their shops close – thank you, we hope to see you back in business soon. To all our volunteers: look after yourself, we will reschedule our volunteer week celebration. To the clinical staff: you are our healthcare heroes. To our children young people and families: life may be different, what doesn’t change is Rainbows commitment to you.

Life will change, decisions will be difficult. However, I am optimistic that our place in the hearts of people will help us through the crisis, and with the help of our community, we can rebuild and redesign Rainbows future. Stay safe stay well.

Photo by Daan Stevens on Unsplash

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