Poet who died from cancer inspiring fight for change in UK treatments

Late last year, Dunk was able to get onto a trial in the United States that offered him hope and improved his quality of life for a short period. He was only the sixth patient to take part and the first non-US citizen. When he had travelled to the US, he was unable to walk far without help and used a white stick because the tumour was affecting the part of his brain that processed his vision.

Despite that, he had performed at the Fringe on three occasions – including a solo show entitled ‘The Suicide Notes’ about his battle with mental health and subsequent recovery that was widely praised. During the show, though, he had a recurrence of the illness and lost all of his eyesight but he was able to continue because he had all of the poems memorised from before his illness and radiotherapy and each show’s humour was improvised.

Duncan Campbell had treatment in America (Image: Duncan Campbell)

After his two sonodynamic therapy (SDT) sessions in New York, he was able to walk up to 5 miles unaided and his vision markedly improved. He had gone from needing half an hour to read a deck of cards to 8 minutes and felt this was due to the trial treatment however disentangling outcomes become so difficult due to small numbers of patients, the different treatments they have all had some of which may yet be working and the very poor prospects for recurrent brain cancer patients entering a trial only after all other options have failed, or seem to have failed.

Trials take so long and are hugely expensive but since regulatory approval is easier in the US it happens there where medical bills their are so famously high, diminish the pioneering companies resources faster.

Dunk was convinced of benefit but unfortunately, he then suffered a seizure shortly before he was due to get his third monthly treatment and was unable to continue in the trial placing his family in the nightmare situation of trying to get back to the safety of the NHS from New York when he was now so ill.

For his dad, Duncan Snr, he believes it could have been different if they had been able to do the trial in the UK. He is an oral and maxillofacial surgeon himself and had advantages in research links, medical support he could provide outwith the UK and an understanding of what was available in the US in an emergency. 

There had been a possibility that it could have happened in Dundee, an hour away, and the staff there were ready and eager, but red tape meant they were unable to get the necessary regulatory approvals and New York became the only option.

Now he is urging Britain to become more like the USA in terms of their willingness to take a risk and allow patients to make that decision on whether they want to take part in the trial. The medical mantra of ‘Do No Harm needs to include ‘do not delay until every safety concern is attended to’ if the patient is likely to die while waiting, allow them a chance, allow researchers to test on patients fully informed and willing to take a risk before they are desperately unwell.

Speaking to The Herald, he said: “If there was only a little bit less red tape, the documentation that was missing to let them do the trial in the UK was of zero significance. They were just paper chasing. For hard-nosed business reasons, one company wasn’t able to help another one.

“There was the exact same trained staff in Dundee an hour up the road, the exact same facilities except they didn’t have the machine but the place that was doing the trial would have been given the machine. They were just as highly trained and wanted to do it just as much.

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“The American system took the view of ‘don’t worry about that piece of paper, it didn’t matter anyway’ and just gone on with it. The British system would need the piece of paper so they decided not to do it here and that put us at huge risk going over there and our luck ran out.

“It would have been so much better and so much less risk. We ended up coming back in terribly bad shape. If they had done it in Dundee, it wouldn’t have been a third of a million went to a hospital in New York, it would have been maybe £150,000 going to a hospital in Dundee and they would have done three patients.

“If you look at world health care, you’ll never find any measure of health care economics where the NHS gets beaten by America. They are so much lower than expected but they beat us in a thing I’d like to change in the UK, they are not afraid to fail.

“In the UK, we are so risk averse and the thing I would like to change is if you’ve got a disease which is going to kill someone in a year and if that person chooses to go for quality of life then that’s fine.

Duncan Campbell with his dad, also Duncan (Image: Duncan Campbell)

“But if they say ‘look, I don’t want to go for quality of life, I’d rather roll the dice and hope I get four sixes’, they should be allowed to access to a trial with less red tape. As long as it has been through the regional hospital and a bunch of consultants and can say it’s worth a pop.

“There’s a guy in Australia, Professor Richard Scolyer, who is one of the top people in relation to malignant melanoma and he then got a similar type of brain cancer to my son. If he had asked about the immunotherapy for his cancer he knows he’d be dead long before it got approved, so he just said to his colleagues, ‘give it to me’. They broke all the rules but that’s what a patient would want for themselves.”

Dunk was treated in the UK for his illness for a long time before the trip to America and his dad insists the ability and character of UK medical professionals is as good as any in the world, but they need to be given more opportunities to take a risk.

He continued: “NHS care is really good. When I see people raising money from family and friends to opt out of the NHS to go away and spend their life savings or remortgage their house to go abroad and do something, I feel terribly sad.

“The quality of the experts who I’ve spoken to in the UK are as good as anywhere. The quality of their character is as good as anywhere, these people need to be given a wee bit more of a free rein because they can do it. People don’t get put in the position of raising all their families money and going somewhere to get something that probably wasn’t very good.”