A family who’ve stayed at home since March to protect their extremely vulnerable 13-year-old son have spoken out about their hopes and fears as shielding comes to an end.

The Salt family, from Chesterfield, have stuck rigorously to shielding guidelines to keep Adam safe, who spent the first 13 weeks of his life in intensive care after arriving eight weeks early.

The teenager has quadriplegic cerebral palsy, chronic lung disease and uncontrolled epilepsy, which means hospital visits have been a regular fixture throughout his life.

When Adam was six, the family began visiting Bluebell Wood Children’s Hospice for much-needed respite care, with his younger sister Isla, 9, also taking advantage of the charity’s sibling support.

But throughout lockdown, the family have had limited access to the support networks they rely on.

“As a mum of a severely disabled child with a life-shortening condition and complex medical health needs, my focus quickly turned to planning,” said Kerry.

“There were so many questions; How do I keep us all safe? How will we get essential equipment? What about all the medicines? What happens with regards to physio? Will the syringes and equipment still be delivered? What if we run out of oxygen? What happens if Adam is taken ill?”

Anxiety on how best to proceed coupled with sleepless nights quickly became the norm for the Salt family, who can feel isolated at the best of times.

But as time went on, they adjusted to the ‘new normal’ and became comfortable in their bubble, sharing their experiences online with others in a similar situation on Bluebell Wood’s private peer support group for families.

Now, as shielding for the most vulnerable comes to an end on July 31^st, they are faced with yet more uncertainty.

“If Adam gets Covid, he will not survive,” said Kerry.

“Life in lockdown has given me control over who sees Adam, and I don’t really want to let this go.

“The news reports of thousands crammed onto beaches and spilling out of bars with no social distancing makes me feel very sad and extremely disappointed.

“I'm already thinking about the winter months. Will there be a second wave? Do we allow Adam to go back to school? Do we allow his carer Rachael, who he adores so much, back into our home? Will there be a vaccine?

“There are still numerous questions I need answering.”

Throughout the pandemic, Bluebell Wood have kept in close contact with the Salt family, adapting its support to a more virtual model.

While end-of-life and emergency care has continued to be provided in the hospice and at home, many of the hospice’s other services including counselling, sibling support and activity and therapy sessions have taken place remotely.

Bluebell Wood is carefully planning a safe reintroduction of respite care at the hospice and short breaks in the community, so there is light at the end of the tunnel for families like Adam’s.

“We’ve been visiting Bluebell Wood for several years now and it feels like we’re part of the family,” said Kerry.

“It’s somewhere we really feel like we belong, so we’re very much looking forward to returning."

“And it’s not just for us as parents, it’s for Isla too. Having a child with complex needs has such a big impact on siblings so knowing that Adam’s needs are all met at Bluebell Wood means we can focus on having that time as family.”

Susan Wood, Director of Care at Bluebell Wood, said: “We know that these past few months have been incredibly difficult for so many of the families in our care, which is why we’ve done everything in our power to be there for them in different ways.

“We’re very much looking forward to welcoming children like Adam and Isla back to the hospice – but their safety, as well as that of our staff and volunteers, has to be our top priority.

“That’s why when we reintroduce respite care at the hospice and short breaks in the community, we will be doing it in a planned and gradual manner, mindful of the latest NHS and government guidance, to make sure we’re doing it in as safe a way as possible.

“We know there are families who would love nothing more than to return to the hospice or have a short break at home, while others may choose to continue shielding. Whatever these families decide, we will be there for them in every way we can.”

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