Date published: 27 July 2020 by Claire Coussins

When it became clear the coronavirus was likely to become a pandemic the immediate and completely understandable reaction for people was – “what does it mean for me?”

Having said that, my first thought was – “everything is cancelled, how will Rainbow Trust survive with no income?” There was, and remains, no doubt in my mind that Rainbow Trust must survive for the benefit of the families we support and those yet to come.

I felt an overwhelming responsibility for 2,500 families with a terminally ill child being able to continue accessing the support they need and for 100 staff and volunteers worrying about their futures. That’s some responsibility!

I am extremely lucky to be part of an incredible network of charities – all united in our fight to protect our futures, for the people we are here to serve. Several of the early conversations I had with people within these networks proved critical as, by various and rather bumpy routes, they have ended up being instrumental in Rainbow Trust still being here right now.

The other crucial factor to survival is the incredible team that makes up Rainbow Trust. In my experience people work here because they are passionate about what we do – it isn’t just a job, and that has shone through in the pandemic. Whether working or furloughed, they have shown tireless persistence, resilience, humour and ability to keep each other going from producing the family cat or dog on a zoom call to wearing our well-recognised Rainbow Trust ‘hair’ to cheer up a meeting.

But it has been tough - really tough.

We have had some wonderful successes and also vast disappointments, we have had money come in and money go out, we have had staff sick, we have had staff furloughed and staff going to extraordinary lengths to support other roles and areas that are not their responsibility or main area of expertise.

What were we doing at the height of the pandemic?

During this pandemic, our Family Support Workers were identified as keyworkers on the front line and helped to relieve pressure on the NHS.

With 85% of families we support self-isolating at the outset of pandemic, we had to re-think the way we could meet their needs, no longer always able to be by a family’s side, in person. I’m proud of how the team rose to the challenge, supporting families in new and different ways - via video calls, intensive telephone support, medical supplies pick up and drop-offs, grocery doorstep deliveries, and crucial breast milk deliveries to neonatal wards on behalf of isolated mothers.

We consistently delivered on average 500 occasions of family support per week, and the impact was clear from the feedback we received:

‘The video calls have been an unexpected lifeline.’

‘In the current COVID-19 environment I think Rainbow Trust are an essential lifeline, especially from a mental health perspective... for my children and for me… The way they adapted (within days!) to remain an essential lifeline of support to my family is laudable.’

‘Rainbow Trust have helped me get to and from hospital to visit [our baby] in the NICU [neonatal intensive care unit], so I don't need to rely on taxis or buses to get there. This has helped massively, as traveling to hospital was making me very anxious.’

And it is not over by any stretch of the imagination but we have learned so much.

What will we take away from this?

We know that:

• The embodiment of Rainbow Trust is its people
• Families value and need what we provide
• We are agile and resilient
• We can adapt to new ways of thinking and working
• We are empathetic
• We can be more successful if we don’t operate in silos even if ‘we’ve always done it that way’
• We can learn a lot if we listen to new ideas – however off the wall they sound
• We are excited by doing things differently
• We are delighted to see the world out there slowly beginning to appreciate our long-standing desire to collaborate.

The last of these is hugely important to me – why? Because organisations such as Rainbow Trust do not exist for themselves, do not exist to make vast amounts of money, do not exist for the benefit of our staff, supporters, service providers or volunteers; we do not “own” the families we support, the donors who support us or geographic areas in which we operate. We exist for one reason and one reason only, the families that need our support. And if we are not the best placed organisation to do what a family needs we will find the organisation or person who is. We will share our skills, our resources and opportunities to collaborate for the benefit of the families and no one else.

We take each family, who is in the unimaginable position that their child might die before them and we put them at the centre of our support and the centre of their world and encircle them with the help they need, they want and that works for them. No tick box lists from which to pick a service, no directions about what they must do and how; we look at who they are and what works for them as individual families and individual people within those families and that is different for every single one.

That is what Rainbow Trust does.

That is what Rainbow Trust has always done.

And the pandemic has shown us that we can continue to do it. Maybe by different routes and using different tools and we may have to try harder and more creatively to ensure that the funding is there but our absolute passion is to ensure that families continue to receive the support they need.

What now?

Like many other charities we have had to take a really hard look at our organisation and the way in which we can work smarter and more efficiently in the future. The world of fundraising and income generation has changed dramatically and we have to cut our cloth accordingly.

We have had to restructure, which sadly will result in around 12% of our workforce being made redundant. And I am sad to be losing great people who are all passionate about what Rainbow Trust does. Whilst this may mean that we are not able to support the same number of families going forward, we are doing our utmost to preserve as much of our frontline support as we can by merging teams to create synergies and targeting the most high priority families. We will not cease our service for any family currently receiving support – we will absolutely make it work; the impact will be on our capacity and the number of new families we can take on at any one time.

Despite the restructure and the situation we are in today, we have not given up on plans to continue to grow in the future. The pandemic is showing a real desire by charities to collaborate much more than ever before to achieve their aims. We have taken the first steps in doing this and are excited to see how our skills and expertise can complement those of other organisations to ensure a holistic and effective approach to children’s palliative care.