Doctor's told dad seizures were 'just epilepsy' and missed terminal brain tumour
In June 2022, dad and TV editor Steve Ackroyd, had a scary seizure in the middle of the night.
It took months before he was diagnosed with Steve initially being told the he was suffering from epilepsy. Only after having private treatment he was then told he had an inoperable brain tumour, known as a glioblastoma. After feeling let down by the NHS, Steve is now getting treatment in Germany, which is helping, but it's very expensive.
Steve Ackroyd, 48, who edits Netflix's show Sex Education, had his first seizure on June 19, 2022. His wife Francesca described the tonic-clonic seizure as 'like something out of a movie'. An ambulance and the police were called to their home in Palmers Green to help him until he came around.
After a CT scan, they were told this probably wouldn't happen again. Francesca said: "I remember thinking that was the worst experience of my life and then it happened again around six weeks later." Steve then had another seizure about two weeks after that. The doctors did another CT scan and said he had epilepsy. Francesca explained: "Something was picked up on both the CT scans but we were told this was due to head positioning." Worried about being told this, they decided to go private and booked an MRI.
Steve was told that something was wrong and to go to A&E. They rushed to UCLH in London and it was on that weekend in August that Steve was diagnosed with a brain tumour. Francesca told MyLondon: "We found out by junior doctors coming in and saying 'you know this brain tumour you've got...', we always say it's like a comedy script. We thought 'is this real life, is this really the way you get treated with a terminal diagnosis?'"
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Steve and Francesca on their wedding day (Francesca Ackroyd)Steve had a biopsy and histology, and the results of the histology signified that it was a low-grade tumour, something the family celebrated at the time. But, further results came back from a molecular study in Germany and the tumour was actually a grade four glioblastoma.
He began 27 rounds of radiotherapy and daily chemotherapy, which Francesca said he sailed through. But a week after this treatment, in December 2022, he started having daily seizures. Steve has not been given an exact time frame for how long he has to live, but the family says it's a 'very poor terminal prognosis'.
Francesca added: "He couldn't move without having one, he had eight to ten seizures a day. He went into hospital for a few weeks and approximately two weeks later the same happened again and they continued to up his anti-seizure medication. A few months later Steve started having a seizure and it didn't stop for four hours. Again, it was an absolute catastrophe as the paramedics couldn't give him certain medication because he was conscious, something they hadn't seen before. It was incredibly distressing for him."
After this, the Ackroyds discovered that the chemotherapy wasn't working as well as the doctors had hoped, so they decided to try another type of chemotherapy. "That's when we were like, you can't help us, we have to do something ourselves," said Francesca. "That's when we went to the IOZK clinic in Germany, who are absolutely fantastic."
They've been raising money for his treatment, and since Francesca can't drive, their friends and family have been taking them to Cologne. Steve has had eight immunotherapy sessions at the clinic, and UK oncologists have confirmed that the treatment is working as his last two MRI scans have been stable.
Steve was diagnosed with a brain tumour in August 2022 and is now going to Germany every six weeks for treatment (Francesca Ackroyd)Francesca added: "We need to continue what we are doing but the costs are absolutely insane and eye watering. It is going to cost in excess of £300,000. It's just heart breaking that we can try and do this but there are so many people that can't. It's so upsetting that the NHS is such a mess. Some of the treatment has been disgusting.
"Before he got the epilepsy diagnosis, when he was having the crazy seizures and falling out of bed and smashing his face up, and I'm screaming at the doctors surgery saying you have to help me, one doctor's receptionist said 'well, its not like its cancer'. It's been an emotional rollercoaster, I don't have the words to go back to that point of being so helpless and not getting the help I needed.
"It's been really hard. Our daughter knows that Daddy's got brain cancer that doesn't go away but she is an amazingly resilient girl and is so important in keeping our spirits up. It's hard when she's not riding on her bike with Daddy and she see's him wobbling around."
Steve will need to continue going to the German clinic every six weeks for the next year and they are continuing to raise as much money as they can to make this possible. You can donate to Steve's treatment here.
UCLH has been approached for comment.
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