Panel considers review into benefits for sick children

Tuesday 13 October 2020

The current "tick-box" system of financial support for caring for children with complex needs could be investigated by a panel of politicians following a mum's story of being refused the benefit for her young son.

Kirsty Channing’s five-year-old son, Kian, suffers from bilateral renal dysplasia, a rare condition where the kidneys do not develop properly in the womb.

 As a result, Kirsty and her husband have to perform 10 hours of dialysis treatment on Kian five nights a week. This is in addition to a six-hour overnight feed through a feeding pump, performing regular checks and giving Kian 10 medications a day.

Despite multiple applications for the Child Personal Care Benefit, the family have been repeatedly refused, as Kian is too "well" to meet the threshold for support under the current application form. Kirsty has now launched a petition to push for change.

Speaking to Express about Kirsty’s campaign, Deputy Kevin Pamplin who sits on the Health and Social Security Scrutiny Panel, said they could conduct a review of how the Child Personal Care Benefit works next year if "enough people come forward."

The Panel will discuss the matter at their next meeting in the coming days. 

I just gave a brief interview to the @bailiwickxpress saying that I totally support the efforts being made here. This could be our next review on our HSS scrutiny panel similar to our Mental Health review which led to urgent changes. Will discuss with the panel later today

— Deputy Kevin Pamplin (@KevinPamplin) October 12, 2020

Explaining the need for a detailed scrutiny review process and its ability to stimulate change, he referred back to last year’s Mental Health review, which led to urgent improvements to Orchard House and the island's mental health care system.

Deputy Pamplin noted that the panel does not "take on individual cases – we’re there to scrutinise policy and procedure", but will act "if we feel like there is a growing gap in public need.”

He added that “if enough people come forward, we’ll be able to make a case and do a report [on the Child Personal Care Benefit system", and urged anyone similarly affected to speak to their local representatives so they can build a case.

Pictured: Deputy Kevin Pamplin has said that more individualised, "wraparound" care is required.

Speaking about this case specifically, he emphasised the need for more individualised, "wraparound" care that understands a family's specific needs, which should include working with “other areas outside of Government,” stating that “there are many ways we can support people in the charity sector.”

Deputy Pamplin said the situation raised questions about the Government’s approach to the public as "customers", expressing that “this case really illustrates that everyone has the right to be dealt with as an individual.” 

He also expressed his dismay at hearing that Kirsty's Ministerial appeals had either not been replied to, or forwarded back to Social Security, lamenting that it makes “people feel like they get passed around the system.” 

Deputy Pamplin has now lodged a number of questions for the Social Security Minister for next week’s States sitting, requesting specific details around the Child Personal Care benefit.

Pictured: Deputy Pamplin has lodged a number of questions on the topic of the Personal Child Care Benefit for next week's States Assembly.

Speaking of Kirsty’s petition, he said that she was “absolutely right that it needs to be looked at" and that for the Health and Social Security Panel "it’s just a matter of timing.”

Deputy Louise Doublet also expressed her concerns about the Channing family's experience, stating: “This is clearly a family in need of help and it is very disappointing that despite the parents appealing to various Ministers, assistance has not been forthcoming. 

“I understand a form-based approach makes processes more efficient but in this case I think Ministerial discretion needs to be applied.  

“The help that we as a society give to carers who are looking after those with long-term conditions or disabilities, should be needs-based.  We should value care of all forms and recognise the important job that carers do.” 

Kirsty's petition currently has over 1,000 signatures, meaning a Minister will have to issue an official response.

If the petition reaches 5,000 signatures, States members will consider debating the proposal.