Bluebell Wood Children’s Hospice is backing calls on the government to urgently provide detailed guidance for families of seriously ill children, after new research revealed they are feeling more isolated than ever despite the easing of lockdown.

Some families caring for children with life-shortening and life-threatening conditions say they feel like a “forgotten group” according to the joint study by leading children’s palliative care charity Together for Short Lives, Martin House Research Centre and the University of Southampton.

Now Together for Short Lives is calling on the government to urgently provide additional guidance for isolated families of children who may need to continue shielding for the foreseeable future.

The ‘SHARE Study’ revealed:

• 95% are fearful that their child will catch the virus from their parent
• 93% felt isolated during the pandemic
• 93% fear their child’s treatment will be cancelled or delayed
• 57% said isolation has brought up negative memories
• Families are missing out on vital care and support for their child while they continue to shield at home

Simon Hills, Chief Executive at Bluebell Wood Children’s Hospice, said: “Throughout the Coronavirus pandemic we’ve done all we can to  be there for those in our care, adapting how we work in ways we never anticipated.

“We’ve continued to provide emergency and end-of-life care both in the hospice and in the community. And, recognising the impact isolation has on our families, we have ensured regular telephone contact and continued to provide many of our services using virtual technology, whilst making sure we’ve always been at the other end of the phone line for all families whenever they need us.

“However, we know that it’s not the same as visiting the hospice for respite care as families ordinarily would. Unfortunately, throughout the pandemic it hasn’t been possible to offer much-needed respite stays at the hospice.

“Many of the families in our care are under an incredible amount of pressure, and the time they spend at Bluebell Wood for respite provides a very real lifeline.

“We’d like nothing more than to welcome everyone back to the hospice, but their safety has to be our top priority.

“That’s why it’s absolutely vital that the government provides detailed guidance for the families of some of the most vulnerable children and young people in our communities.

“Families caring for children with life-shortening and life-threatening conditions require all the help and support they can get, and they need to know how they will be able to access this support safely.

“At Bluebell Wood we are a light at the end of the tunnel for many of the families in our care, but we can’t do it alone.”

The ‘SHARE Study’ research, which has been released as part of Children’s Hospice Week 2020, highlighted the additional strain faced by families who routinely suffer from isolation and loneliness.

Many parents, exhausted after months of providing 24/7 care for their child at home, will carry on shielding their child and family long after social distancing ends.

Andy Fletcher, CEO for Together for Short Lives, said: “Coronavirus has changed all of our lives, and families caring for a seriously ill child feel more alone than ever.

“Lockdown has been so tough, and many families will carry on shielding long after social distancing ends.

“The SHARE study mirrors Together for Short Lives’ experience of what families have told us via our helpline and family support services during the pandemic. We are deeply worried about the long-term impact on children and families’ wellbeing and mental health.

“It’s vital that these vulnerable children and families get all the support they need, from government, the NHS and other vital services. In particular, we must do all we can to make sure children’s hospices can continue to provide lifeline care."

“The pandemic has hit hospices hard financially and that’s why our Children’s Hospice Week campaign is so important this year – it is vital that we pull together to protect the lifeline care that children’s hospices provide for vulnerable families today, tomorrow and long into the future”.

The UK Government has an important role to play in helping families of children with life-limiting and life-threatening conditions to feel less isolated. Together for Short Lives, in partnership with a coalition of other charities are calling on ministers to:

• deliver additional guidance on government plans for those required to shield for longer
• clearly set out the education, health and social care support that families of seriously ill children are entitled to during the pandemic
• work to restart the education, health and social care services that vulnerable children and families rely on as quickly and as safely as possible