 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. 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){kind=link}
Declan Spencer has been told he has just months to live. His mum is at her breaking point as she spends hours awake to care for him as NHS carers are able to provide what he needs
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.