A Guardian investigation has found that children with serious health conditions are getting sicker owing to persistent failings by Sciensus, a private company paid millions by the NHS to deliver vital medicines.
Autumn Powell, eight, who has Crohn’s disease, is one of those who became more unwell after repeatedly being let down by the company. Here her mother, Dallas, 30, describes the relentless battle she faced trying to secure her daughter’s treatment.
“This all started back in May of last year. Our daughter was seven at the time. She started having bowel issues, high fevers, rapid weight loss and stomach aches so intense that she would have to stop whatever it was that she was doing to keel over and hold her stomach in tears.
After many visits with our GP, multiple hospital stays, abdominal ultrasounds, an MRI, a referral to the children’s hospital, an endoscopy and a colonoscopy, she was finally diagnosed with Crohn’s disease in January of this year.
The children’s hospital set us up with a treatment plan right away: an eight-week course of steroid tablets to help control her symptoms followed by injections at home every two weeks. Another option was to have infusions at the hospital every eight weeks instead of the injections at home, but as neither myself nor my husband drive we opted for the home injections to save us the hassle of travelling to the hospital.
We were set up with the company Sciensus, and had our first delivery of injections booked for 31 March. It was the day before the spring half-term began and I kept our daughter home from school because I anticipated a nurse coming to teach us how to do the injections for the first time.
Autumn pictured before her diagnosis when she had lost a stone in weight
We waited all day for a delivery that never arrived, with no explanation as to why the injections were not delivered. Our daughter was weaning off the steroid tablets in preparation to start the injections.
Once I finally got in touch with Sciensus, I did not receive an explanation as to what happened with our delivery, only another delivery date almost two weeks away, for 12 April. The 12th came and went, with no delivery or explanation.
I rang Sciensus and asked what has happened with the injections and was given yet another date for 17 April. Meanwhile, our daughter was now completely off the steroids. Her symptoms were returning and she was becoming more and more unwell.
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I contacted her doctor and explained what has been going on. Her doctor put her back on the steroids to keep her symptoms under control until she has started the injections.
When I rang Sciensus after the third failed delivery, I was told there was an issue with the injections at the warehouse but that they would issue a new order for our daughter’s injections as she is very overdue to start them now. That delivery date was 1 May. That made four no-shows for our now eight-year-old daughter’s injections.
One of her main symptoms is stomach pain – that has come back. She has withdrawn from wanting to play. She doesn’t have the energy to play with her sister or with friends at school. She sits out at playtime because her tummy hurts.
Sciensus has added so much unnecessary stress to our lives, when we were already struggling with accepting our daughter’s diagnosis.
Our daughter has been incredibly strong and brave throughout this whole last year with her health issues. She has missed school due to her illness and while waiting for Sciensus deliveries and nurse visits that never showed up. This company was supposed to make things easier for families like us, but we’ve been let down.
Our daughter’s doctor and the Bristol children’s hospital have been absolutely incredible with their care and we feel extremely grateful to feel so supported by them. It’s a shame that we cannot say the same about Sciensus.”
After the Guardian contacted Sciensus, the company launched an investigation and within hours delivered Autumn’s first treatment injection to her home in Somerset.
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