Our care is more important than ever

26 June 2020
This is Children’s Hospice Week. At Martin House, we use it as an excuse to have some fun, with a few activities or games we can enjoy together – and usually an excuse for everyone to dress up!

But it has a serious message too – it’s our chance as children’s palliative care specialists to join our voices together with our colleagues across the UK to shout about the importance of what we do.

It’s more important now than ever. This is the toughest time many of us have ever faced, and families caring for a seriously ill child feel more alone than ever.

Social isolation is already a huge problem for families of children with disabilities, and this has only been exacerbated by the lockdown.

While they have been shielding their children for the last three months, they haven’t been accessing all the healthcare services the way they normally might – families have been keen to avoid hospital admissions, for example.

We’ve been doing our part to help them, with our doctors and clinical nurse specialists holding video consultations.

Until last week, but we’ve only been able to admit children and young people to the hospice in an emergency, or at the end of their life.

For many families, the last three months has been exhausting. They’ve been providing all the care their poorly child needs 24/7, while often also juggling home schooling their other children, without getting the break they would normally get at Martin House.

We’ve been concerned that with no end in sight to the restrictions, families are reaching crisis point. This is why we decided we had to offer some form of planned care again, to give mums and dads the break they so desperately need.

We surveyed our families to find out how they wanted to use Martin House, and whether they would want to come for planned breaks given the restrictions we’d have to put in place.

We also asked if they would welcome more community outreach from us. The answer to both was a resounding ‘yes’, so that’s what we have done.

 Children can come alone or with one parent or carer for short planned breaks. It’s not the same as a normal stay, but we can still give the expert, holistic care children and young people need.

Our care team are going out to more families’ homes, to provide specialist care to children and young people, but also to support the family, as many have told us they value having someone to talk to.

Talking and communication spans all the care we offer, and I think we can all understand how much more important it is right now to make sure we connect with each other. This is even more the case for our families, who have been shielding for so long.

It’s so important for families to have that outlet, and we know they have appreciated the regular calls we have been making to them throughout the lockdown to stay in touch.

Our new way of working will take time to establish – many parents are understandably nervous at the thought of leaving their home while coronavirus is still a threat. However, we are taking all measures necessary to ensure everyone at the hospice stays safe, and children and young people get the care they need.

Children’s hospices are a lifeline – even when we have to find different ways of caring, this is still children’s hospice care, and we are still here for our families.