Mum forced to stay awake for 60 hours non-stop as NHS care for son breaks down

An exhausted mum was forced to stay up for 60 hours in a row to help look after her disabled son after a breakdown in his NHS care.

Alex Spencer had quit one of her jobs, and on one occasion had to stay up for 60 hours without a rest due to issues with her son’s ventilator.

Declan, 24, has a severe and progressive muscle wastage condition known as Duchenne muscular dystrophy, requires a ventilator to breathe and lives with chronic heart and respiratory failure while being unable to move unassisted.

Miss Spencer has had to quit one of her jobs, and suffered a mental breakdown due to needing to take care of her son at all times around the clock – which she claims is down to a lack of healthcare providers, reports the BBC.

Although there have been notable recent boosts in funding for Continuing Healthcare, professionals say that scarcities in personnel and escalating costs are leaving families without sufficient assistance. Occasionally, individuals express that they become so fatigued from caregiving that concerns about their loved ones’ safety start to arise.

Ms Spencer told the BBC: “Dec’s got high-level needs, doing the suctioning and the cough assist machine, troubleshooting the ventilator, knowing the difference between him going into respiratory arrest and cardiac arrest.”

She added: “His life is totally dependent on the person looking after him, but I’ve had carers crying on my shoulders, saying ‘I’m not a nurse, this is too technical for me.”

The stress of arranging care has affected Ms Spencer so much that she says she has even been experiencing suicidal thoughts.

She said: “After Dec had been in hospital with pneumonia and had deteriorated a lot, his CHC team didn’t ask if we needed any extra help.”

In February medical specialists working with Declan wrote to his local NHS team stating he would need an increase in his care package, but after three months the extra help was not in place.

His CHS team explained to Ms Spencer and Declan that procedure had been followed for increasing care packages, but in May, everything took a heartbreaking turn when Declan received news that he was on “end-of-life” care and had months to live.

Ms Spencer said: “The doctors found Declan’s kidneys weren’t coping very well and told us he can’t take his heart medication any more, which was our biggest hope of keeping him here longer.”

Extra care was asked for by Declan’s consultant, who wrote their CHC team, but it took a month for it to be approved.

Ms Spencer said: “We’re now eligible for 24-hour support with a nurse and healthcare assistant, but realistically it’s not happening because we can’t find the staff.

“I’m still staying up overnight on my own to care for him. And it’s worse than before because Dec’s health needs are now greater.”

“If decisions over Dec’s care had been made sooner, we wouldn’t be in this horrendous situation.”

Ms Spencer added they have been “robbed” of precious time together and it has taken her to her breaking point.

In the months ahead, The pair hope that Declan can continue ticking off experiences from his bucket list. An avid car enthusiast, he has already customised his van with a new body kit and had the opportunity to step into the pit lane during the British GT Championship. Additionally, he unexpectedly crossed paths with the Fast and Furious star, John Cena.

Declan said: “Even when you’re disabled, you can still do your dreams.”

Declan’s CHC team said they “always ensure a patient’s health care needs are met”, but cannot always commission the support families would prefer. It had offered to find Declan a temporary place in a care home, which the family declined, saying a suitable location with staff trained on ventilators would not have been possible at short notice.

The company providing NHS England’s advice line, Beacon, told the BBC it had seen a sharp rise in calls from families “who just sound incredibly desperate, upset, stressed, exhausted, because the care package isn’t working for them, and they are struggling to get anybody to listen to them”.

Its managing director, Dan Harbour, said the Healthcare scheme was “in a perfect storm of financial constraints and significant recruitment challenges”.

The Department for Health and Social Care said arrangements for Continuing Healthcare should prioritise the individual needing help at the centre of the process.

A spokesperson said: “To support ICBs in their provision of this, we’ve made up to £7.5bn available to help reduce adult social care waiting times and increase workforce capacity.”

They also said that the government has made a further commitment to increase staff retention.