Pioneering hospice service has been vital to families during the pandemic

Chloe, aged 14, from St Neots, at the Milton Hub.

Chloe, aged 14, from St Neots, at the Milton Hub. - Credit: MILTON HUB

A new, collaborative, overnight respite care service for children with complex healthcare needs, launched to provide extra support for children and families during the COVID-19 pandemic, is set to continue for an additional seven months.

Milton Hub launched in November last year to support families in Cambridgeshire and Peterborough experiencing difficulties due to the effect lock-down had on care routines.

Many parents and guardians shielding their clinically vulnerable children over the last year had to provide full-time care.

The service was a collaboration between East Anglia’s Children’s Hospices (EACH), Cambridgeshire  Community Services (CCS) NHS Trust and Cambridgeshire and Peterborough Clinical Commissioning Group (CCG).

Jenna Ridout, EACH clinical nurse specialist who has been leading the Hub, said: “Families who have accessed the Hub have generally expressed relief that their child can be cared for somewhere safe, with specialist nursing support, whilst they take a moment to rest or spend time with other family members.

"This more obvious outcome of respite for parents and carers who are exhausted, however, has gone hand-in-hand with their excitement and anticipation of positive experiences for their child to access via Milton Hub. We’ve been inviting children and young people to contribute to a large piece of group artwork, entitled Creative Connections, which is exciting to see grow with each Hub stay.”

Carol Anderson, chief nurse at the Cambridgeshire and Peterborough CCG, said: “We’re so pleased to work together with our brilliant colleagues at EACH and at the Cambridgeshire Community Services NHS Trust to support parents, carers and children with very complex healthcare needs whose care has been affected significantly by the impact of the COVID-19 pandemic.

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“We know this has been an incredibly tough year for parents and children. We feel privileged to be able to offer this respite service to give children an enjoyable break away from their day-to-day routine, and to offer parents and carers the chance to catch their breath and recharge, knowing their children are safely being cared for by a wonderful team of trained professionals.”

Chloe, aged 14, from St Neots and her mum Nadia, are just one family to have benefitted from the Hub. 

Chloe has a neurodevelopmental condition called bilateral perisylvian polymicrogyria. It means she is non-verbal, fed through a tube, uses a wheelchair, has epilepsy and is prone to random illness, among other things. She requires daily physio and support with every aspect of living. Chloe had stays at the Hub in December and February.

Nadia said: “This last lockdown, the isolation of it, has been incredibly hard. Chloe and I have a great relationship. We have a lot of fun and obviously I adore her, but you can’t be everything for one person. She’s such a social little girl! I found it very hard and I became very scared our relationship would be damaged. That’s when Milton Hub stepped in. I was on my knees a bit and it really did save the day.

“It was so important for Chloe to have some social interaction and see someone else. For me, it was important just to have some headspace and, this sounds awful, but not having to think what I was going to do next to make her happy, to know that pressure was off. It also allows me to think about this last year and be miserable, if I want to, and for that to be OK. I’ve not been particularly miserable, but sometimes you feel you’re putting on a bit of a clown face, and it’s really hard day after day after day.”

Kirstie Lynn, service manager for Children’s Specialist Community Nursing Services in Cambridgeshire and Peterborough, said: “We’re delighted to be working with our colleagues across the county to provide some much-needed respite for children and young people. It has been a real opportunity for our teams to learn from each other and really highlights positive outcomes we can achieve when we work together to support families.