The NHS gave me months to live. I had to go to Germany to prove them wrong

Yahoo

15-05-2025

Steve Ackroyd's bike is still in the hallway of his north London home; it is there as an inspiration to keep going. Three years ago, Steve was diagnosed with a rare brain cancer and told he had somewhere between 'six days and six months' to live.
Now, thanks to a pioneering new cancer treatment he is paying for in Germany with the help of a massive crowdfunder, the father-of-one is not only still alive but feels like he is getting slowly better.
'I used to cycle to work – 10 miles there and 10 miles back – every day and I've left my bike in a place where I can see it from the front room as an impetus to get better,' says Steve, 49, a television editor who has worked on shows including Catastrophe and Sex Education. 'At the moment, I feel like an old man. I still can't walk very well and I am totally reliant on my wife. But the way things are going there's every chance that not only will I be back on my bike but I might get to live another 10, 20 years and see my daughter grow up.'
Steve is one of a number of British 'health tourists' who are going abroad for medical treatment. Sometimes it is to avoid NHS waiting lists when the costs are half those of going private – for things such as hip replacements, cataracts and IVF. But there are several who are in Steve's position: desperately trying pioneering work which the NHS has failed to adopt either because it has not yet got health regulation approval or because it is too expensive, or both.
The 2014 story of Ashya King – a boy with a brain tumour whose parents were arrested when they took their son out of Southampton General Hospital because they wanted him to be treated with proton beam therapy in Prague rather than chemotherapy – alerted people to the fact that there were other options to what is being offered on the NHS. Eleven years on, proton beam therapy, which targets some tumours more precisely than chemotherapy, is now offered on the NHS.
It is often people who are desperate who are willing to spend sometimes hundreds of thousands of pounds on treatment abroad which can help prolong a life.
Steve's wife, Fran, contacted the clinic in Germany online when doctors in the UK said there was nothing more they could do for him. 'She's saved my life in so many ways,' says Steve of the interior designer who has given up work to care for him.
Brain tumours are the biggest cancer killer of children and young adults under the age of 40. And as in Steve's case, they often come on terrifyingly suddenly.
Steve woke up on June 18 2022 to find an ambulance crew 'in front of me and my wife was in the doorway with three policemen and I had no idea what had just happened'. He had had his first chronic tonic seizure, when the body becomes uncontrollable, and had been running around his house.
Doctors – looking only at a CT scan – thought it was epilepsy. It was only when a doctor friend said the couple should get a more comprehensive MRI scan, and they were told that it would take weeks to do on the NHS, that they paid privately to have one.
'At the end of the MRI, the technician came to me and said, 'Here is a disk of the scan. You need to go to an A&E immediately,' recalls Steve. In A&E he walked in to see a doctor, who started asking questions about 'this brain tumour that you've got'. It was the first time he heard his diagnosis.
Steve has grade 4 glioblastoma – one of the most aggressive forms of brain cancer. It was the size of a fist, stretched across the right side of his brain. Each year in the UK, around 3,000 people are diagnosed with glioblastoma – in 2023, it killed the television presenter and actress Annabel Giles. The prognosis is almost always fatal.
Steve went through 27 rounds of radiotherapy and two rounds of chemotherapy but was becoming more and more ill because of the tumour – with seizures sometimes happening several times a day.
Still the tumour stubbornly remained as large and that is when Fran found the IOZK Immuno-Oncology Centre in Cologne, which is using the most cutting-edge cancer treatments available. It is used alongside more traditional methods of fighting cancer – Steve started going to Germany, driven by kind friends as he cannot fly – in between chemo cycles.
The centre specialises in immunotherapy which aims to get a person's own body to fight the cancer and it does this in three ways. A virus – which is not dangerous but has immune-stimulating properties – called the oncolytic Newcastle disease virus (NDV) is injected into the cancer patient. It attaches itself to cells which don't have defences against them – tumour cells – and encourages an immune response from the body.
Then something called electro-hyperthermia is applied – it uses an electric field to heat tumour cells to trigger a response in them. And the final aspect, which is a vaccine, is then created from the body's own response to the NDV to get healthy cells to recognise and attack against the invasion of cancerous cells. Key to this treatment is that, unlike chemotherapy and radiotherapy, it doesn't make the patient feel horrendously ill.
Immunotherapy is one of a number of innovative or novel cancer treatments that are being trialled abroad but not yet available on the NHS. Dendritic cell therapy, which works in a similar way to immunotherapy by stimulating the body's own immune system to fight brain cancer, was trialled in the UK at King's College Hospital in 2022 but is still awaiting approval to be used.
Nanotechnology, in which particles of chemotherapy are targeted directly at the cancerous cells, is something that has started being used in American clinics but is still being trialled in the UK, while CAR-T therapy, which is used in Israel and involves collecting a patient's white blood cells and genetically modifying them to recognise and attack cancer cells, is undergoing NHS trials but is not yet fully available.
For Steve, the treatment he is having in Germany, which costs between £8,000 and £32,000 per visit, may not be a complete magic cure – the tumour is reduced but still there and malignant – but it has proved to be a success in that it has massively prolonged his life already, shrunk his tumour and alleviated the almost constant seizures he was suffering from.
Steve is still dependent on the NHS and has check-ups every three months. He says the doctors are working hard with limited resources.
'The NHS are in a real bind, because they're trying as hard as they can,' he says. 'My doctors are the best, they're just not obviously funded enough, but I don't know where that money is necessarily going to come from, because it seems like everything is underfunded.'
His own NHS doctors – he has a team for both the cancer and the seizures – differ among themselves about the treatment he is having overseas.
One doctor was interested in the research, while a second was very against using this new medicine.
'One of my doctors told me, 'You shouldn't be doing it, because you need 10 years' worth of trials,' and I told him, 'I don't have 10 years.''
'Steve has got a very tough prognosis and follows in the footsteps of others who have run out of options,' says Hugh Adams, the head of stakeholder relations at Brain Tumour Research. 'The immunotherapy therapy work he is having access to is making a difference. Immunotherapy holds such promise that I think that in maybe 10 years' time, we'll look at the way we treated cancer and say, 'Wow, that was so brutal.' Immunotherapy, and the whole sphere of personalised medicine, is of real interest, but if we want to get that here we are really going to have to rock the system.
'There are people trying to get it through the regulatory bodies but we can't seem to get the sense of urgency required across – things need to be done differently as it's not even just about the money. In 2018, the then government put up £40 million for brain tumour research and we've just had an inquiry and found that only £11.3 million of that has been allocated.
'This is all being done too slowly when the money is there – it just needs to flow faster from the scientists to the patients and getting them on clinical trials. I know the NIHR [the National Institute for Health and Care Research, which approves funding projects] will say, 'Well, this is the way we've always done things; we have to have our standards,' but we aren't asking them to alter their standards, just be a bit faster.'
There is a fear that going outside the NHS means paying for treatment which can give patients false hope. Medications are licensed in the UK only if they have passed robust trials, according to the National Institute for Health and Care Excellence, which approves drugs for the NHS.
'What people like Steve need are the hope that a clinical trial can bring – because these are people who have run out of options,' adds Hugh. 'And when there isn't clear direction, you will have people sometimes falling victim to snake oil salesmen who are using things that aren't any good or aren't proven. If people have no hope they will fill the void.'
Steve is dependent on crowdfunding to pay for his care and to keep himself alive – he has celebrity friends such as Rob Delaney who have helped advertise his campaigning. But he is aware that he may die leaving his family in debt. It is the most horrendous situation to be in.
'My biggest fear is that I am going to leave Fran and Autumn in some sort of trouble – that they'd have to sell the house,' says Steve. 'We are fundraising to get me through the next three years of treatment only because the NHS ran out of ideas. The doctors here are amazing but they don't appear to have the money or the research to buy the equipment that can help more people like me.
'I am supposed to be dead by now but I am still here and fighting – not just for me but for others like me too.'
To find more about Steve's campaign and donate to his fundraiser go to Fundraiser by Francesca Ackroyd : Steve Ackroyd's Brain Tumour Treatment.
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