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Val’s story – when NHS Continuing Healthcare goes wrong.

SIA Member Val’s life changed forever following a fall in the family home. Her neck was broken in two places. She was paralysed, unable to walk and with limited use of her hands. But after a year of hospital care, she was discharged home with NHS funded carers trained in managing her specific SCI care needs. Yet, just three years later the care funding was withdrawn. She was given five days’ notice of the change.

Val suffers frequent attacks of autonomic dysreflexia, a potentially lethal surge in blood pressure experienced by SCI people.  Her risk of attack is ‘severe’, but the assessor only ticked the box marked ‘high’ risk and Val lost her funding.

In a letter to Mrs Thompson, the local NHS funders said, “Following discussion of all supporting evidence NHS Midlands and Lancashire CSU concluded that you are no longer eligible for fully funded Continuing Healthcare. Although you have a number of care needs, they are routine, predictable and non-complex in nature.” Instead, Val was ‘awarded’ basic social care by her local authority, to be part funded by Val and her husband John, who works as a joiner. There was no way they could afford the difference.

When SIA became involved, Val told SCI Nurse Specialist Carol Adcock “I was so distraught when I read that letter I just burst into tears. I need the carers so I can live at home. My case is complex. I need carers trained in health care to help me get out of bed, go to the toilet, prepare meals and get back into bed at night. It’s not just calling to make a cup of tea.”

She added. “The reassessment of my care was arbitrary and despicable. They made my life hell because of the tick in a box.” SIA demanded that Val’s CHC needs were reassessed and the meeting that followed declared Val eligible for NHS CHC funding and her care package increased by seven hours per week.

This week, SIA held a round table event with key NHS decision makers and others to ensure that Val’s voice is heard. We’re discussing whether severely disabled SCI people should be presumed eligible for NHS Continuing Healthcare, the funding that made such a difference to Val and helps her live at home. We think it could make a huge difference to people’s lives and even save the NHS money. Watch Val’s film and let us know your thoughts by commenting below or by email.

More details regarding the round table event.