Mum’s plea for proper care for terminally ill son

A mum looking after her seven-year-old terminally ill son says the care system has ‘collapsed’ as she struggles to get help since the pandemic.

Nicola Mendrek’s son Joel is completely immobile due to spinal muscular atrophy type 1, and requires round the clock care.

The Scunthorpe family are desperate for support, and claims North Lincolnshire Clinical Commissioning Group –  which is responsible for organising care – is letting them down.

At the start of lockdown, Nicola and her partner took over Joel’s complex treatments themselves as they shielded from coronavirus.

However, since asking that carers visit him at home again, they have found it impossible to arrange the vital help that he needs.

“The care system seems to have collapsed due to Covid, and it’s not building back up,” she said.

“We used to have really good carers several times a day to help with his day-to-day needs, and he would go for respite care twice a month.

“We’re struggling to get that back in place, and I’m having to do most of it myself.

“This isn’t a criticism of the staff at the CCG – they are doing their best, but they just seem too stretched for the amount of work.

“When we had a question, people used to get back to us within days. Now it is weeks or not at all.

“It is children like Joel who are suffering. It would be life-changing for us to get the support that he needs again.”

Joel Mendrek, 7, from Scunthorpe, who has Type 1 spinal muscular atrophy.

Joel was diagnosed with SMA Type 1 when he was a year old.

His family have now been waiting weeks for North Lincolnshire CCG to provide the necessary care for him to return to school after a hospital stay.

Nicola fears he could miss two months of school unnecessarily.

“Joel spent a month in the high-dependency unit at Sheffield Children’s Hospital over Christmas because he had RSV (Respiratory syncytial virus),” she said.

“He has been well enough to go back to school for several weeks now, but he’s not been allowed to go back to school yet as he would need a little bit of extra care.

“We have been waiting and waiting for the CCG to tell us it’s alright.

“The school are doing their best, but it could be half term before he’s allowed to go back.

“He’s seven years old and is so bored at home – he can’t wait to be back in school.”

A spokesperson for North Lincolnshire CCG said: “NHS North Lincolnshire CCG is unable to comment on individual cases. We understand the issues that have been expressed; our patient experience team are available to discuss any concerns via [email protected].”