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'I'm dealing with life-threatening situations - but I'm not a clinician, I'm a mum'

From BBC - November 11, 2017

"She can have up to up to 40 seizures a day - potentially each one could be dangerous."

Hayley Smallman's 15-year-old daughter Holly has a series of complex, life-limiting health conditions.

Her cerebral palsy, chronic lung disease and epilepsy mean she needs 24-hour care at their home in Liverpool.

It is estimated there are 40,000 children like Holly living with life-limiting and life-threatening conditions in England alone.

Many of them need palliative care round-the-clock, which is largely provided at home by their families but with the support of community children's nurses and community paediatricians.

'Alone and scared'

Hayley says: "I have a community matron and a community physio. They work Monday to Friday, 9am till 5pm. They are great."

But when it comes to out-of-hours and weekends, Hayley says she is left without any support.

"We do not have anyone through the night, we do not really have anyone at the weekend.

"I am dealing with life-threatening situations, and if I make the wrong decision that could have a serious impact on Holly.

"I feel like I am trying to do a job, but I am not given the right tools to do the job, and I feel quite isolated and alone and scared sometimes.

"I am not a clinician, I am a mum. To have that support, it's like when somebody gives you that hug and says, 'it's going to be ok.'

"Sometimes we need that - it should not be a luxury - it's a necessity."

Out-of-hours

Hayley is not alone. BBC Radio 5 live Investigates has seen a new report by the charity Together for Short Lives which describes the commissioning of children's palliative care as 'patchy and inconsistent'.

The charity submitted Freedom of Information requests to every Clinical Commissioning Group (CCG) in England asking what services they commission for children who need palliative care.

In all, 199 (94%) CCGs provided data. It revealed that, while nearly all CCGs commission community children's nursing teams, just two-thirds (67%) could say that they commission them to provide care out-of-hours and at weekends.

If this support is not in place, families say they have to call an ambulance or go to A&E.

'Not a nine-to-five job'

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