Words by Wedaeli Chibelushi, Multimedia Producer
Chronically ill patients across the UK allege they've had to go without vital medication amid delays by a private company contracted by the NHS to deliver drugs.
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.
ITV News can now reveal that the CQC is currently reviewing whether to take further regulatory action against Sciensus, having been made aware of concerns about the company’s performance.
A second regulator, the General Pharmaceutical Council, said it has two "open concerns" relating to Sciensus that are being assessed prior to a potential investigation.
The company, 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 those with long-term conditions - like cancer, HIV, and haemophilia - which often require drugs that can't be collected from high street or hospital pharmacies.
Placed under special measures in 2021 for its poor performance, now the firm is facing further action from two separate health regulators
Yet some patients say they have been rushed to hospital and left bedridden because of the delays.
One new mother with rheumatoid arthritis said she was taken to A&E after Sciensus left her without medication for three weeks.
The 37-year-old, who wishes to remain anonymous, told ITV News: "I was unable walk with a small baby... it was such a chronic flare that I couldn't walk, which I've never, ever had before in my life."
The woman said she initially contacted Sciensus when she had two weeks-worth of her medication, etanercept, left. She was told a customer service operator would call her back to arrange a delivery.
After Sciensus didn't make contact, she called again days later. She waited in a queue for around 45 minutes, only to be told by an operator that the prescription sent by her hospital had been deleted and Sciensus had no record of her initial call.
She'd previously had a similar, "epically stressful" hold-up while preparing to start IVF treatment, she told ITV News.
"What I needed was for my arthritis to be as stable as possible," she said, noting that flare-ups can decrease fertility.
"And obviously the way to make that stable, on a very basic level, is to have the right medication".
Eventually, after weeks of phone calls to Sciensus, her local hospital intervened and she received the medication.
This happened in 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 complaining about delays.
83% of those who reviewed Sciensus on the NHS website gave the company one star.
Among hundreds of reviewers, one complained: "I have sometimes had to rearrange four deliveries before my medication actually turned up, by which time I have been without medication for several days. I am on chemotherapy so I literally need this medication to stay alive."
In a response similar to those left below other reviews, Sciensus said it was "sorry to hear of the issue you have experienced" and advised the patient to contact the company for support.
Alongside the NHS reviews, an online petition calling for "a better service for people receiving medication from Sciensus" has racked up almost 350 signatures.
Jacob Millard is among the many who've complained about Sciensus online. Just last month, his hospital team advised him to ring 999 as they were so concerned that his medication delivery was overdue.
"I'd been completely bedridden for days prior to this due to not having any meds," the 23-year-old, who has bowel disease Crohn's, said.
In a letter seen by ITV News, Sciensus apologised and acknowledged that an error in uploading Mr Millard's prescription to the company's system had caused an initial delay.
"There is always a threat of a human or system error occurring,” the letter said, citing a "manual" process and a high volume of incoming documentation.
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Mr Millard's delivery was eventually scheduled. However, on the day he was set to receive his medicine, Sciensus sent him a nurse to administer the drugs, but not the drugs themselves.
The company planned a redelivery and though Mr Millard waited at home all day, again, no medicine arrived.
While going without his medication, Mr Millard experienced a flare-up of his Crohn's disease, which has symptoms such as extreme fatigue, stomach pains and weight loss.
He said taking time off sick from his receptionist job cost him £220 in wages.
"I got put under an extreme amount of stress... I literally couldn't even take my puppy outside for five minutes without needing to come back in," he said.
"Literally just the thought of even speaking to [Sciensus] sent me into an overload of stress."
Alongside such mental strain, missed doses can cause "very serious" long-term physical problems for those with chronic illnesses, Sarah Campbell from the British Society for Rheumatology (BSR) said.
"Gaps in treatment can also lead to a build-up of immune resistance, making treatments permanently less effective at managing symptoms. Too many patients across the UK have experienced these damaging delays which is why BSR continues to call for national scrutiny of the safety and reliability of homecare medicines services,” she said.
Sciensus' own brochure tells patients that "taking your medication as prescribed ensures that the best possible outcomes are achieved, allowing you to take control of your condition by reducing flare-ups".
But patients like Sam Brown say using Sciensus has led to them feeling a real loss of control.
Having gone a month without medication for her arthritis earlier this year, Ms Brown said she can no longer take the company she calls an “integral part of my care” at its word.
“I feel like I always have to treat them with suspicion,” the PhD student told ITV News. ”I can't presume that they're going to provide me with care.
"When it's all on their system and fine, they're generally very good. But it's just when it goes wrong, it goes really wrong.”
It's not just patients that are being impacted. Dr Benjamin Ellis, a consultant rheumatologist and advisor to charity Versus Arthritis, said: "This puts a strain on the NHS that the NHS really doesn't need at the moment.
"When patients are approaching the NHS saying, 'we can't get our medicines that we need, that we're entitled to, that you've prescribed' and then people in the clinical team... that should be doing other things that deliver people's care are now being tied up chasing a delivery company."
Sciensus, which says it serves 200,000 patients across the UK and Europe, told ITV News it was "very sorry" patients have faced delays, but said the company couldn't comment on individual cases.
"We understand how important it is for people to get their medicine on time," the statement continued.
"In cases where patients have concerns, we have a range of support services, including a priority helpline and same-day emergency dispensing.
"Sciensus is a specialty pharmacy that dispenses medicines to patients on behalf of the NHS throughout the UK.”
The company is one of 12 that provide homecare medicines services in the UK.
Providing an insight into why NHS trusts might award Sciensus with contracts despite its documented failings, a spokesperson for Guy’s and St Thomas' Trust told ITV News that many medicines needed by chronically ill patients are "routed through" specific homecare companies, like Sciensus, "by the original medicine manufacturer due to reasons of stock security and stock management”.
Meanwhile, the University College London Hospital NHS Foundation Trust, which also has contracts with Sciensus, said: “There is high demand for medicines delivered at home because patients say it is more convenient not to visit hospital regularly for medicines... we have regular meetings with our suppliers to try to help them manage capacity and to spread work between suppliers."
Belfast Health and Social Trust said Sciensus and other homecare providers offer an "important and valuable" service when it comes to specialist medicines.
All three Trusts advised any of their patients who may be experiencing difficulties with homecare providers to contact them.
The CQC said: “CQC is aware of concerns raised in relation to Sciensus Pharma Services Limited. Inspectors are currently reviewing these concerns to identify whether further regulatory action is required and refer those that are not within CQC’s power to address to its partner agencies, as appropriate.
"CQC will report further on this as soon as we are able to and will not hesitate to take any action necessary to make sure people using services are safe.”
The General Pharmaceutical Council (GPhC) said: "We do have two open concerns relating to Sciensus. They are in the process of being assessed (prior to potential investigation) so we cannot comment on them at this stage."
The regulator added that Sciensus passed its most recent GPhC inspection, which took place in April 2022. Have you had issues with Sciensus or other homecare medicine delivery services? Email email@example.com.