Protecting our Future: an open letter from Anne, our Director of Care Services

At Rainbow Trust we continue to balance the huge challenge of supporting families with a seriously ill child, who are in more need of our practical and emotional support than ever before, against the sudden uncertainty around our fundraised income.

We want to be clear to the families we support and our donors about what we are doing to protect our service and our future, in these troubling and unprecedented times.

We are now managing our short-term service delivery in the most pragmatic and sustainable way possible, so that as we start to emerge from this crisis, we will still be here to continue to work towards our vision of supporting every family who has a child with a life-threatening or terminal illness who needs it.

To the families we support, we understand you are finding your situation is much worse than before, and we are committed to continue to support you, however and whenever you need it most.

We have been able to quickly adapt and change our service delivery model in the face of the Covid-19 crisis. 85% of families we support are self-isolating, which naturally triggered an overnight rethink to the way we can meet family’s needs. We are no longer always able to be by a family’s side, in person.

Rising to the challenge, we immediately started to support families in new and different ways - via video calls, intensive telephone support, medical supplies pick up and drop-offs, grocery doorstep deliveries, and crucially breast milk deliveries to neonatal wards on behalf of isolated mothers.

We are proud to have consistently been there, in this way, for around 500 families a week since the crisis began.

From today, we are making use of the job retention scheme, and some of our Family Support Workers are now furloughed. This is a necessary step, to do our best to get through this crisis and come back stronger.

We will ensure that no family who is in a crisis is left in need. We will still be there for families as our remaining Family Support Workers will work hard to adapt our support to fit. Where we can, we will also continue to take referrals of new families.

To our donors, we could not do any of this without you, and we are humbled and grateful for your support in these difficult times.

Our emergency appeal is still as relevant today as when we launched it back in March. Every pound will make a difference and your donations mean we can continue this service and plan for the future.

Our focus right now remains to limit the additional impact of the pandemic on families with a seriously ill child. A bridge to NHS services, we are providing safe transport for children undergoing medical treatment who have compromised immune systems, caused by treatment like chemotherapy, bone marrow transplant and dialysis. Sadly, irrespective of Covid-19 children are still dying of their terminal conditions. We are providing intensive bereavement support, for parents whose child has died and are having to navigate an unthinkable process of burying and grieving for their child during a pandemic. We remain a vital lifeline to brothers and sisters of seriously ill children whose routines and schooling have been taken away from them, adapting and increasing support by video and phone. We are an outlet for parents who have nowhere else to turn with their anxieties and fears, protecting their mental health.

But even with a refocus of service delivery and cost saving measures, we are having to plan for a significant drop in fundraised income to the end of this year. We find ourselves having to rethink our fundraising model and activity, much of which relied on people coming together to raise money. We are having to consider the impact of an unspecified period of social distancing impeding our ability to fundraise in the way we have been used to. An uncharted course, but one we are determined to overcome.

To families and donors alike, we are committed to adapting to whatever new challenges arise. Times of crisis require new, different and flexible interventions. We have proved that we can deliver support in different ways and will continue to do so in addition to our traditional service.

We are acutely aware that when the rest of the world starts to return to some kind of normality, that the journey will be far from over for the families we help.

It is crucial that we can still be here for those families who will not be able to go out when the rest of us can.

Our vision is to reach every family who needs us, and last week saw new research published showing that the number of children in England with life-limiting or life-threatening conditions has trebled over the last 17 years to 86,625. The number is predicted to rise by at least another 11% by 2030.

So at a time when our support is, and will be, needed more than ever, we are taking all measures we can to survive the long term, so that every family who needs support in future can access it.

You can support this vision, by donating today:

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Donation payment values.

£5 could provide bereavement support to help a family cope with the death of a child.

Thank you.