Children with serious health conditions are getting sicker as a result of persistent failings by Sciensus, a private company paid millions by the NHS to deliver essential medication, the Guardian can reveal.
Parents of sick children say they are repeatedly let down by botched, delayed or missed deliveries, while NHS paediatric clinicians warn some are suffering avoidable harm as a result.
Sciensus failed to send injections to Autumn Powell, an eight-year-old girl with Crohn’s disease, four times this year, according to her mother, Dallas Powell. As a result, she has suffered stomach cramping, pain and fatigue, and been off school sick.
“It makes me mad, frustrated, but mostly it’s heartbreaking seeing my child suffering – and feeling helpless,” Powell said. “I am not one to go and complain publicly, but this is serious.”
Autumn’s NHS doctor has had to take emergency action. He prescribed steroids in an attempt to get her symptoms under control while waiting for injections from Sciensus. Originally due on 31 March, then 12 April, then 17 April, then 1 May, the company failed to show on all four dates.
After being presented with the findings, Sciensus immediately launched an investigation. It also vowed to learn lessons. Within hours of the Guardian approaching the company, Autumn’s first treatment injection was delivered.
“Sciensus has added so much unnecessary stress to our lives, when we were already struggling with accepting our daughter’s diagnosis,” said Powell, 30, from Somerset. “It’s unbelievable and it’s shocking.”
“This is people’s health, this is children’s health,” she added. “I can’t comprehend it.”
Asked about the case, Sarah Sleet, the chief executive of Crohn’s & Colitis UK, a charity, said Autumn’s experience was “really upsetting”.
“If you’re trying to manage a condition like Crohn’s and you don’t get the medicines you need when you need them, you can become very unwell very quickly,” she added. “Some people may even end up needing emergency hospital treatment. Sadly, this family’s story is not unique.”
In a complaint to the Care Quality Commission (CQC), the care regulator, three NHS paediatric clinicians working at two of the UK’s largest children’s hospitals have raised multiple concerns about Sciensus.
Medicines ordered by the NHS to be sent urgently to sick children were delayed or never arrived, they said. Parents of those with serious health conditions also experienced difficulties with the company’s app. In some cases Sciensus did not respond to emails and calls about children’s missing medicines.
The complaint reviewed by the Guardian said some children experienced a flaring of their disease after delivery delays.
The problems added to the already heavy workload of NHS staff at the two children’s hospitals, the complaint said, and took clinicians away from treating other patients, in order to deal with Sciensus.
Finley Smith, a four-year-old boy with severe haemophilia A, has suffered recurring problems with Sciensus for three years since 2020 when he was 12 months old, his mother, Charlotte Smith, says.
When Sciensus delivered his medication chilled, instead of at the mandatory room temperature, it became unusable – and had to be ditched. As a result, Finley missed his treatment.
“They said they would put in place a safeguard so this didn’t happen again,” said Smith, 28, from Cornwall. However, the medicines have arrived chilled at least five times since.
Sciensus has also sent Finley out-of-date medical items. After his parents complained and asked for replacements, he was sent more out-of-date items. Deliveries of essential medication had been abruptly cancelled or simply not turned up “many times”, Smith said, repeatedly putting her young son’s health at risk.
Another time, Sciensus ordered Finley’s family to throw away hundreds of costly needles after the company delivered a large batch in the wrong size.
Smith and her husband, Richard, have resorted to buying some of their son’s medical equipment online because “it is hit and miss if Sciensus will deliver the correct item”. Richard Smith has reported the problems with Sciensus to the CQC.
Short of options, some parents have raised the alarm about Sciensus via social media. One mother claimed her daughter, diagnosed with cancer, had missed eight weeks of hormone therapy because of the company.
Another mother said her son had waited 10 weeks for medicines from Sciensus. A third said her son had been left without vital medication, despite promises the company had made to her.
Callout
The revelations come after a Guardian investigation last month exposed serious and significant complaints by patients, clinicians and health groups about Sciensus. In response, the CQC said it was reviewing concerns raised about the company.
Another watchdog, the parliamentary and health service ombudsman, has received 18 official requests from patients to examine grievances against Sciensus since August last year, but has not begun any investigations, according to a person familiar with the matter.
In the wake of the Guardian investigation, more than 100 patients have been in touch to complain about the company.
In a statement, Sciensus said that if any patient had concerns, they should contact the company. “We know how important it is for people to get their medicine on time and we have a range of support services to help patients, including a priority helpline and same-day emergency dispensing and delivery,” a spokesperson said.
“We are very sorry for the distress that Autumn, Finley and their families have faced as a result of these delays and difficulties.
“We have launched an immediate investigation into these issues, and will be working with clinicians in their local hospital to find out what went wrong. We will take the lessons learned from these cases and ensure it doesn’t happen again.”
