Statement from the Chief Executive of Rainbow Trust on the Government proposals

We welcome the Government now having agreed to provide some financial support for charities but are concerned that the level of support pledged is only a fifth of the £4bn the sector is expected to lose in 12 weeks, as addressed by NCVO.

The devil will be in the detail but, as a charity with Family Support Workers on the front line of the COVID-19 crisis, it is likely to fall short. It is difficult to see how the £160million allocated to those of us supporting the vulnerable will be fairly divided across what is a large group of hugely necessary charities.

Rainbow Trust is a charity providing social palliative care to families with a terminally ill child. We currently receive no government or NHS funding and do not qualify for the children’s hospice grant as, whilst hugely important, social care does not meet the criteria.

New calculations reveal that if our tailored family support did not exist, the cost to the NHS and social care system would be at least £3.9 million each year.

All the families to whom Rainbow Trust provides support are already in that unimaginable situation that their child may die before them and now they are seeing that exacerbated with the worry of COVID-19. 80% of those families asked have told us that their situation is now ‘worse’ or ‘much worse’ than before. Many tell us that Rainbow Trust Family Support Workers are sometimes the only trusted constant in their lives. Despite the coronavirus, families are still having to travel to hospital for vital treatment, such as dialysis and chemotherapy, siblings are at home needing more distraction and emotional support than ever and sadly children are still dying.

At the moment, Rainbow Trust Family Support Workers are still there for them. With many outpatient and routine appointments cancelled, families are no longer able to receive immediate advice and guidance from their clinical team, but our Family Support Workers continue to be the bridge between hospital and home, relieving pressure on vital NHS staff. We are still there to listen to their fears, and give vital emotional support. We are still there when vital medical appointments are going ahead to provide transport. We are still there to help bereaved families plan their child’s funeral when it is all too much for them to cope with. We are still there to pick up emergency supplies when no-one else is.

However, without a significant injection of financial support this may not be able to continue.

The impact on parental mental health of withdrawing this support overnight would be enormous. Ending practical support from a trusted support worker with whom a relationship has been established is unthinkable.

We have had to take advantage of every cost saving measure available, and that includes furloughing the majority of fundraising and head office staff. That of course limits our ability to continue to undertake fundraising although we have launched an emergency appeal and are grateful to all those who are able to donate to this.

If we furlough our frontline care staff our support to vulnerable families would cease overnight. We urge the government to reconsider allowing charity staff who have been furloughed to volunteer back to their organisations; we are not in this for profit but are, as the Chancellor himself put it, a “critical part of the social fabric” of this country and that has to continue.

We urge Rishi Sunak to review the proposals and to stand behind his comment to do “whatever it takes”.

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