Desperate mum forced to stay awake for 60 hours straight providing son's care
A mother who cares for her adult son says she was forced to spend more than 60 hours awake terrified he could die if his ventilator stopped working.
Declan Spencer's mum Alex has spoken out as his daily 24/7 support, supposed to be provided by the NHS often fails to help them. Declan, who is 24, has Duchenne muscular dystrophy - a severe and progressive muscle wasting condition. He needs a ventilator to breathe and is unable to move on his own.
He is entitled to round the clock support from the NHS Continuing Healthcare scheme (CHC) like 16,000 other people across England and Wales who need long-term care in their own home. But the breakdown of the system means Declan's mum Alex is struggling to pick up the pieces, she has given up one of her jobs and told the BBC she had a mental health breakdown and has considered suicide. And Declan himself says the anxiety caused by his care situation has left him unable to sleep.
Declan's CHC team said they "always ensure a patient's health care needs are met" but added that they 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 as they feared a suitable location with staff trained on ventilators would not have been possible at short notice.
The family and Declan's local CHC team, NHS Midlands and Lancashire Commissioning Support Unit, have struggled to find sufficiently trained and experienced carers within the £18.87 an hour budget for his care.
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Mum Alex told the BBC: "Dec's got high-level needs. Doing the suctioning and the cough assist machine [to clear his airways]. Troubleshooting the ventilator. Knowing the difference between him going into respiratory arrest and cardiac arrest. 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'."
Alex said around 60 carers have entered Declan's life in the past two years. "It's made him feel like a burden," she added. Declan said: "They are meant to have been trained on my equipment, but I have some who come in knowing nothing."
Alex is fighting for Spencer's care (Copyright unknown)In May, Declan and his mum were hit with the devastating news that he is now considered as "end-of-life" and has months to live. Alex added: "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. 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."
She has been trying to get him carers (Copyright unknown)Alex the situation has "robbed" her and Declan of joyful times together, and taken her to breaking point. They now hope to complete items on his bucket list. "Even when you're disabled, you can still do your dreams," Declan added.
The Department for Health and Social Care said arrangements for Continuing Healthcare should place the individual at the centre of the process. A spokeswoman 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 added that the government has made a further commitment to boost staff retention.
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