Family picBy Adam EleyBBC NewsFamilies of people with complex medical needs are warning the NHS system that funds their care at home is struggling to provide sufficient support.Despite recent significant increases in spending on Continuing Healthcare, experts say staff shortages and rising prices mean families are lacking help.Some say at times they are so exhausted from providing care, they worry about the safety of their relatives.The government says it has invested billions into health and social care.We’ve followed 24-year-old Declan Spencer for 10 months, witnessing how the repeated breakdown of his care has left his mother having to provide it by herself, day and night.Meeting Declan and his mother Alex, you immediately understand the warmth and strength of their relationship.They chat at the table about his dating app experiences as Alex feeds him breakfast, interrupted by calls from a care company and specialist equipment provider that need her attention.”Normally you would get annoyed with your parent occasionally, but that never happens,” Declan explains.”But she can’t do all my care. It’s a lot of work for one person.”Declan has a severe and progressive muscle wastage condition known as Duchenne muscular dystrophy and is unable to move unassisted. He requires a ventilator to breathe and lives with chronic heart and respiratory failure.The care he requires at his family home in Leicestershire should be met by the NHS Continuing Healthcare scheme (CHC), which is designed to enable people with the highest and most complex needs to live outside of hospital.At least 16,000 people in England and Wales are in a situation like Declan’s, having their long-term care, in their own home, funded through the scheme. Others may receive “fast-track” care for the final months of their lives, or have a care home place funded.Scotland and Northern Ireland have different approaches to managing patients with high-level healthcare needs at home.Declan is entitled to 24/7 support – plus extra help in the morning and before bed. He and Alex have been asking only for care overnight and during her working hours – but repeatedly they have faced a shortfall in care workers.Through their video diaries, email logs, phone calls and messages, we have seen the toll this has taken on them.Family picAlready living with the realisation of Declan’s declining health, finding support has added pressure and stress, with Alex standing in when no-one is available. She has given up one of her jobs and had a mental health breakdown. On one occasion she remained awake for 60 hours caring for Declan and monitoring his equipment.If there was an issue with his ventilator overnight, she says, “it could potentially end his life”.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.Guidelines state that patients should always have the support set out by their care plan.But 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 Continuing Healthcare scheme was “in a perfect storm of financial constraints and significant recruitment challenges”.Integrated Care Boards [ICBs] decide the support package an individual receives, introduce families to their approved care agencies and monitor the quality of care provided. Their representatives told the BBC they were grappling with a lack of experienced care workers, at a time when patients were living longer and with greater levels of need.Declan says the anxiety caused by his car …
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