Dad of boy who wants round the clock care tells Starmer of struggle to see physician

The dad of a 17-year-old boy with a rare genetic disorder has told Keir Starmer of his fears over getting the right care for his son.

Nathan Wilkins, 49, met the Labour leader on a campaign trail visit to Long Lane Surgery, in Coalville, East Midlands, as Mr Starmer discussed his plans to end the 8am scramble to get a GP appointment. Mr Starmer and Shadow Health Secretary sat down with Mr Wilkins, Sunil Phakey, and Pamela Kulaszewska, to discuss the challenges facing patients.

Mr Wilkins spoke to the Labour leader about his son William, who has Pallister-Killian Syndrome (PKS), an extremely rare condition which means he has two extra parts to one of his chromosomes. It affects around 500 people in the world.

William suffers from respiratory problems and epilepsy, as well as being registered deaf and blind. He requires round-the-clock care.

Mr Wilkins told Mr Starmer: “So this morning he could be great but this afternoon he could possibly need blue-lighting to hospital.” The Labour leader replied: “So you are constantly on edge.”

Mr Wilkins agreed, adding: “As he moves into adulthood, we lose those (paediatric) services which then puts more pressure on the GPs because I’m not able to get him up here if he’s on a ventilator. Very rarely can you get a doctor to come out and see you because they’re too busy. Unless it’s five to eight in the morning.”

Mr Starmer said he could hear the strain in his voice about the pressures of getting the right care. Mr Wilkins replied: “It can change in two hours from him being perfectly well to extremely unwell.” He said the GPs were fantastic but under a lot of pressure.

The dad-of-four, who lives near Coalville, said his wife had given up her job as a senior nurse to care for their son, swapping a £40,000 salary for £70-a-week carer’s allowance.

Speaking to the Mirror afterwards, Mr Wilkins said: “William will be turning 18 in September. It’s been a struggle to get but the fact that he is getting there is a lovely problem to have.

“The GP service and his medication is all readily available but the services turn to drop when you go from paediatrics to adults – and those services really are our safety net.”

The rapid response service will come out check on William’s oxygen levels and can use a ventilator to help him get his breathing steady. But without this service, the family have to take William straight to hospital where he could be exposed to illnesses from other patients.

Labour wants to train thousands more doctors and allow patients to see the same GP if they choose. It will also update the NHS app so patients can easily book appointments.

Mr Wilkins said he was interested in Labour’s plans but raised concerns about how the NHS could get the doctors it needs quickly enough. He also said carers needed to be paid properly.

“My daughter can earn money putting crisps on a shelf in Morrisons than a carer can looking after a special needs child and that just makes no sense whatsoever,” he said.