Sciensus: Cancer survivor, 16, went weeks without drugs amid delays by NHS-contracted firm
Words by Wedaeli Chibelushi, Multimedia Producer
A 16-year-old brain cancer survivor went without her daily growth hormone injections for almost a month - she's among numerous chronically ill youngsters who've been impacted by delays within an NHS-contracted company.
In the last year alone, Sciensus was awarded NHS contracts worth more than £5 million, despite being placed into special measures by health regulators in 2021 following widespread delivery failings.
Sciensus, which is based in Burton-on-Trent and says it "works with every NHS Trust in the country", should provide a lifeline for those who rely on specialised medications.
These include people with long-term conditions - like cancer, HIV, and haemophilia - which often require drugs that can't be collected from high street or hospital pharmacies.
ITV News previously revealed allegations that some Sciensus patients had been rushed to hospital and left bedridden because of delivery delays. The report prompted dozens of patients to come forward with their own experiences.
Hayley Shave's 16-year-old daughter Camille survived an aggressive childhood brain cancer, but now lives with brain damage as a result of the radiotherapy she received. Doctors instructed Camille to take daily growth hormones injections, but after Sciensus failed to deliver her medication for almost four weeks, Camille suffered with cognitive issues and was left feeling "sluggish".
Ms Shave told ITV News: “After everything we'd been through with her, it felt like such a silly thing for her not to have this medication when the NHS had spent hundreds of thousands [of pounds] on her to get her better.”
Camille eventually got her delivery, but months later, she went for eight days without medication. Sciensus apologised and sent the injections out after Ms Shave sent an complaint directly to Sciensus’ CEO Darryn Gibson - correspondence that ITV News has seen.
Camille's deliveries have been “perfect” ever since, Ms Shave says, but the weeks-long delay brought back painful memories for her family.
“It took us back to when she was first diagnosed with the tumour... I think my husband and I have still got a bit of post-traumatic stress after it. And what you don't want is people complicating things for you when it's so unnecessary,” she says
Camille’s weeks-long wait for medication took place in July 2021 - the same year in which the Care Quality Commission (CQC) put Sciensus, then known as Healthcare at Home, into special measures.
CQC's inspection found the company's "unsuitable" IT systems led to almost 10,000 missed deliveries and even led to patients being hospitalised. Healthcare at Home was rated 'good' after a following CQC inspection later in 2021.
Back in 2014, the General Pharmaceutical Council also reported widespread delays at Healthcare at Home, and said the issues were caused by Healthcare at Home taking on several new patients and transferring distribution to a new provider.
Almost a decade later, Sciensus patients are still reporting delays.
A number of parents have complained about their children missing doses on the NHS website, where over 80% of the hundreds who reviewed Sciensus gave the company one star. Elsewhere, a Facebook group for disgruntled Sciensus patients has over 150 members.
Have you had issues with Sciensus or other homecare medicine delivery services? Email investigations@itv.com.
ITV News spoke to one of those patients, Susan*, after her recent post on the group’s discussion board. She said that this month, her 10-year-old son went without his daily growth hormone injections for two weeks.
Susan's relationship with Sciensus began late last year, when her son's doctor put him on growth hormone treatment. Although her son is 10, he's "physically the size of a six-year-old", Susan says. He also struggles with fatigue and a loss of appetite.
Sciensus delivered his first two deliveries of of his daily injections, albeit after lots of chasing by Susan. But the third time, despite Susan's usual prodding, her son's delivery was delayed by two weeks.
"I was stressed, really stressed... arguing with my partner - he's at work, I do the majority of the calls - but at the weekend I was like 'I cannot deal with these people anymore,'" she says.
Concerned that Susan's son had gone for a fortnight without the injections, a pharmacist at Hull Royal Infirmary hospital paid for a private courier to make an emergency delivery to him.
The NHS Trust overseeing Hull Royal confirmed to ITV News that this payment was made.
Susan's son may have finally received his medicine, but the two-week break has had a lasting impact. He had previously overcome a fear of being injected daily, but the disruption of his routine has sent him back to square one.
"He's been crying the last two days when we've had to do it," Susan says.
Furthermore, missed doses of growth hormone injections can have a physical effect on youngsters like Camille and Susan's son.
University of Manchester endocrinology expert Stephen Shalet says, plainly: "There's very good evidence showing that if compliance is poor, then [children] don't grow so well, there's nothing very subtle about it."
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In response to ITV News' report, a Sciensus spokesperson said: “We are very sorry if any patients have faced delays but without the details on these cases we are unable to comment specifically.
“If these patients, or any other patients, have concerns, we would urge them to contact us straight away. 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.”
As a general rule, ITV News does not offer the personal details of interviewees when approaching an organisation for a statement.
Last month, the CQC told ITV News it is reviewing whether to take further regulatory action against Sciensus, having been made aware of concerns about the company’s performance.
On Monday, it said: “CQC is continuing to monitor Sciensus Pharma Services Limited, alongside partner agencies, and will not hesitate to take any action necessary to make sure people using services are safe.”
A second regulator, the General Pharmaceutical Council (GPhC), said on Monday it had ruled out an immediate investigation into Sciensus.
However, GPhC said it was "monitoring the situation" and that its "local inspector is working very closely with Sciensus and the Care Quality Commission to ensure that the provider makes improvements to the quality of the service".
An NHS England spokesperson said: “Homecare providers are assessed on a monthly basis against standards set by The Royal Pharmaceutical Society, and providers that do not meet them will be held to account and action will be taken to ensure that levels of service are improved.”
Any regulatory action couldn't come soon enough for Susan, who dreads the moment her son's medication stocks begin to dwindle and she has to organise another delivery with Sciensus.
She says: "As I'm down to my last month again, I'm going to be having to ring and say, 'can you get started getting this ready after all the mistakes you've made in the past?', which you shouldn't have to do, really."
*not her real name