The mother of a severely disabled 24-year-old requiring the most intimate of care at home has been told by the NHS to source and pay for her son’s carers personal protective equipment (PPE).

She has not been told how to assess PPE which is Covid-compliant for her son’s carers, nor how to source it. She was instead verbally referred to a government website for health and care professionals and which contains no advice for those receiving care.

This failure is provoking concern that a second Covid spike could partly be provoked by a lack of safety assessments of visiting carers’ needs.

UK charity Genetic Alliance UK is calling for an urgent review of whether care authorities are meeting the obligations of the NHS’s own guidance on managing risk and employment of carers. This implicitly includes making sure that families can provide visiting carers with a safe place of work, including essential equipment.

Cameron’s story

Twenty-four-year-old Cameron has a rare disease which affects his brain and spinal cord. He has no mobility, limited awareness, is blind and cannot attend to any of his core functions and needs, nor does he have the ability to express those needs.

Pre-pandemic, Cameron had a substantial and approved care programme funded by a direct payment personal budget. The package included a five-day a week placement at a sensory college, overnight respite provision, three carers providing morning, evening and weekend care. However, post Covid-19, the package shrank dramatically – college had to be abandoned, respite care is no longer available and the family is down to two carers.

His mother Karen does not know how to professionally assess the Covid-appropriate PPE needed for the intimate care that Cameron requires and she does not know how to source it at a reasonable cost.

In the past ten weeks of confinement, the family has received just one check call from the NHS continuing healthcare from someone clearly unfamiliar with Cameron’s needs. Karen is increasingly physically and mentally exhausted and being told to assess, source and pay for her carers’ PPE. This reinforces the sense that families like hers, and those that care for them, are being neglected.

Karen says: “Until Covid-19 my husband and I had 17 years of experience and support in providing our carers with an appropriate working environment. Now I just don’t know what to do. I am not an expert in the necessary PPE, protocols and risk assessments for the new pandemic environment.”

Genetic Alliance UK Chief Executive Jayne Spink said: “Family members are not experts in PPE and to expect them to take on the responsibility for identifying and sourcing the right type of PPE is unreasonable and unsafe. Managing the risks for the cared-for person, and for professionals providing personal care the home shouldn’t be placed on the shoulders of the family members.

“This laissez-faire approach is an abdication of responsibility,” she added. “The Government should be ensuring that those cared for at home – and those who provide that care – are properly protected throughout the Covid-19 pandemic, rather than risking life and leaving the wellbeing of thousands of individuals to chance.”