VITAL support services ‘just stopped’ during Covid for a severely disabled 14-year-old Westbury girl, her mother has told White Horse News.
Josselin Tilley’s family has appeared on BBC Breakfast to talk about the effect the pandemic has had on the lives of thousands of the UK’s most vulnerable people.
Because of a rare genetic condition called CHARGE, Josselin is profoundly deaf, blind and unable to communicate, walk, or eat – she is fed via a tube. She uses a wheelchair, has to be cpap ventilated at night, has scoliosis and osteoporosis, and is prone to seizures among many other conditions.
The family’s network of services for Josselin include physiotherapy, speech and language therapy, occupational therapy and respite care – all of which stopped in March 2020, although Virgin Care, the provider, says it continued running services throughout – agreeing with families the most appropriate way to deliver care while minimising risk to vulnerable patients.
The cessation of support was a double blow for the family which were also left devastated by Covid-19 when dad, Lee, contracted it and was hospitalised for five weeks, fighting for his life after falling into a coma.
Karen, who also had the virus and was at home caring for their three children, told White Horse News, “Josselin used to have appointments most weeks. But since Covid, the vast majority have just stopped, meaning Josselin has had very limited access to physio, OT, paediatrician, evening care – all provided by Virgin Care in Wiltshire.”
The teenager struggled, Karen said, and started pulling her hair out and picking at her skin. She was prescribed anti-depressants and anti-psychotic medication, along with prescription drugs to cope with pain she was having in her hips and spine because of the lack of physiotherapy.
Karen explained, “Suddenly she was put on all these new medications. There was just no support for us at all – it was horrendous. She’s not ever going to walk and talk so they just don’t bother with her.”
Josselin’s experience could not have been more different to that of her dad who is now at home in recovery. He has regular medical appointments with an occupational therapist, a physiotherapist, and has been sent equipment to help him regain his mobility.
Karen says, “Lee is doing OK but still struggling with his mobility and a range of health issues – but he is receiving excellent community care and from Bath RUH.”
But for Josselin, her cochlear implant, which needs retuning every few months, has not been checked for nearly two years; her last eye test was over the phone and she has not had any face-to-face physiotherapy since March 2020. Her walking frame also no longer fits.
Karen says, “It feels like it’s because she’s disabled, so it’s not worth bothering with. She’s not ever going to walk and talk, so they just don’t bother with her.”
Now restrictions have begun to ease, Karen says she is determined to get life back on track for the family.
Val Scrase Virgin Care’s MD for B&NES Devon and Wiltshire community services said, ”Our teams worked tirelessly throughout the pandemic to make sure the people who needed our care and support continued to receive it both face to face and virtually, balancing the need for support with minimising face to face contact.
“We have worked closely with families to understand the best approach to suit them throughout the last 18 months, including adapting how we work with the most vulnerable to reduce risks and help to keep everyone safe.”
