My son, an only child, was born three months prematurely in the early 1990s. He suffered a bleed into his brain at birth and now in his late 20s is quadriplegic with dystonic cerebral palsy. He has no speech and little voluntary movement. He is currently placed in a private care home and funded by NHS Continuing Healthcare. In contrast to those in care homes for older people, neither the staff nor the residents of my son’s care home are subject to a testing regimen for covid-19. This seems to be yet another group forgotten in the pandemic.
Until his move into adult social care in May 2019, my son enjoyed a decent quality of life at a centre of excellence for the care of the most severely disabled. Now in a cramped, poorly resourced, privately run care home with four other very vulnerable young adults, he is bored, confused, shielded, confined, and unable to access any of the services which made life before the pandemic tolerable.
As parents, we were given no choice of placement. It was presented to us as the “only option” by the NHS Care Manager.
From the start, the building and facilities were barely adequate, but since the pandemic began in March there have been many problems. Firstly, the use of personal protective equipment was only tokenistic, there being shortages of essential items. Secondly, the high turnover of staff illustrated the difficulty and complexity of the work. Staff are paid only a few pence above the minimum wage, to provide what is effectively complex nursing care. We, the parents, argued strongly for enhanced pay for carers, but were told that would be “discriminatory,” since staff in other homes owned by the group also worked “very hard.”
The biggest issue, however, has been to get the management to recognise that this particular group of residents are highly vulnerable in the pandemic. Until recently they were fully shielded and isolated. Parents and even therapists were not allowed to visit, which was disturbing and disorientating for everybody. There has never been regular testing, and the few tests that have been conducted have been only in response to symptoms. We, the parents, have made many complaints about this, but have been told by all the relevant agencies, including the Care Quality Commission, that the home is “following government guidelines.”
Meanwhile, in another private nursing home, my 95-year-old mother has been tested three times and staff are tested regularly. She is completely relaxed about her own situation, but greatly worried about her grandson. The irony is poignant.
The plight of this uniquely vulnerable group of young adults feels like a disaster waiting to happen. I feel quite helpless while my son is in considerable danger. I fear another dithering “too-little-too-late response” followed by a round of blame. I call on the government to act now to protect my son and others like him.
The author has remained anonymous to protect the identify of his son