Family fought for nearly three years to get NHS care funding reinstated

PUBLISHED: 11:19 07 December 2018 | UPDATED: 11:29 07 December 2018

Stock photo of money. Photo: Getty

Stock photo of money. Photo: Getty


A family had to wait nearly three years to appeal a decision which stripped their disabled son of NHS funding.

Peter Clinton, 28, and from Gorleston suffered a brain haemorrhage and hydrocephalus two days after birth leading to a diagnosis of cerebral palsy and severe developmental delay.

Since then his health has been additionally impacted and he now also has epilepsy, complete sight loss, scoliosis, reflux disease and is doubly incontinent.

He is cared for by his father Tony Rowell and sister Louise Sinclair and Mr Clinton had been receiving NHS Continuing Healthcare (CHC) funding since 2008.

CHC is a complex package of health and social care funded solely by the NHS, and is often used for those with long-term complex healthcare needs.

But the family were told in 2015 that his eligibility needed to be reassessed, and following this were told Mr Clinton was no longer eligible.

It took nearly three years, with help from organisation Norfolk Family Carers, to get the CHC reinstated.

And Alison Easton, adult services manager at Norfolk Family Carers, said: “Working through the complexity of the process and procedures often leaves family carers stressed and frustrated.”

Mr Rowell said: “It just went on, and on, and on, and we’re battling to get the money back that we spent. We had to buy all his wipes and pay for all his taxis.

“It put loads of stress on the family, as we run our own business too.

“[Peter] would have suffered dramatically. I don’t give up on anything but there are a lot of people out there who gave up and they’re entitled to it.”

Rebecca Hulme, chief nurse with NHS Great Yarmouth and Waveney Clinical Commissioning Group, said patients were reviewed once a year.

She said: “If a patient’s care needs or presentation has changed between reviews, this may affect whether they still meet the criteria for CHC. If the professionals’ judgement is that a patient no longer meets the funding criteria, the patient or their representative is able to appeal, as has happened in this case.

“We are sorry that the appeal process took so long and acknowledge that this should have happened in a more timely way.”

Ms Easton said: “Norfolk Family Carers were delighted with the outcome for Tony, Louise and Peter. We know that there are other family carers who would benefit from support to navigate the application process or the appeals and review process. We would encourage carers to contact us to discuss their circumstances.”

• For more information on Norfolk Family Carers call 01603 219924 or email

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