Treatment of Terminal Illness

Siobhain McDonagh Excerpts

1st reading
Tuesday 26th November 2024 Commons Chamber

[Dame Siobhain McDonagh (Mitcham and Morden) (Lab)]

I beg to move,

That leave be given to bring in a Bill to make provision about the liability of practitioners, and of the organisation which employs the practitioner, where a practitioner prescribes an unlicensed medicine to or carries out a non-standard treatment on a person who is terminally ill; to make provision about the import, storage and use of equipment and unlicensed medicines for the purpose of such prescriptions or such treatment; and for connected purposes.

Advances in medical science wait for no man or woman—unless, of course, they are one of the thousands of people in the UK each year diagnosed with a rare cancer. In that case, they are likely to receive NHS treatment that has remained unchanged for more than 30 years, with no improvement in outcomes, no access to drug trials and no access to the huge progress that has been made in individualised cancer vaccines or immunotherapy.

It does not have to be that way. In Germany, medical practitioners can offer experimental treatments to patients with a terminal diagnosis without fear that they, or the organisations that employ them, will be held liable or penalised. They can offer patients a lifeline that doctors in the UK are not allowed to offer. I am introducing this Bill to protect clinicians in the same way and to allow patients access to the latest medical treatments.

In truth, we know this ten-minute rule Bill has no prospect of becoming law. However, it serves another purpose: to give a voice to the thousands of terminally ill patients and the ordeal they are forced to endure in search of a lifeline; to expose the culture of fear among medical professionals in the NHS surrounding individualised treatment; and to suggest a better way forward.

Excuse my German pronunciation, but Individuelle Heilversuche is the German law that allows doctors to provide personalised, individual treatment plans. When a terminally ill patient has run out of traditional treatment options, medical practitioners can use treatments that have not been fully approved, or that have been approved for other purposes, as part of individual treatment programmes. They are able to prescribe drugs for off-label use—drugs that are known to save lives but are not yet available to patients with a specific condition. How can it be right not to offer the same rights to patients in the UK? Instead, the NHS—and healthcare in general—abandons them to die when the outdated and inadequate standard care fails. Understandably, many fight and take the hard choice to travel internationally—in this case, to Germany—to find the treatments denied to them in their own country.

I know this path, as I walked it with my sister. I held her head as she was sick into a bin on the concourse at Heathrow airport’s terminal 5. I obscured her from flight attendants in fear that they would take her off the plane, and that we would not get to Düsseldorf. One night, I wondered how I would explain her death in a foreign city, in a country where I did not speak the language or understand the emergency care. But I would do it all again, because I wanted to extend her life and there was nothing for her here in the UK.

We were lucky that we could pay for it. Thousands of people are currently following the same difficult path. For some, it is harder because they do not have the money. At a time of great distress, they are forced to sell their homes, run marathons or bake cakes to fund the treatment their loved one needs. Many are forced to travel alone because their partner cannot afford to go with them or cannot afford to take their children.

Laura was diagnosed with a glioblastoma when she was just 18. A first-year student at King’s College London, she was told that she had just 12 months to live under the standard care available through the NHS. For Laura’s family, this was just not good enough. In Germany, they found an individualised treatment plan that helped Laura to live four and a half years past her diagnosis, defying the mere 12 months that oncologists in the UK had given her.

Before she lost her battle with cancer, Laura completed her degree and a wonderful bucket list, including crossing the equator, presenting the weather and meeting Michelle Obama. This decision to travel overseas for highly expensive treatment is not to be taken lightly, but I ask the House the same question that Laura’s indomitable mum, Nicola, asked her oncologist, “What would you do if this was your child?”

When Zoe, a 35-year-old secondary school teacher with two young sons, was diagnosed with a grade 4 cancer, she found the NHS treatment available seemed old-fashioned and out of date. Her oncologist was against trying anything different, despite telling her she had just 15 months to live. Zoe was able to access experimental treatment in Germany—treatment that research has since highlighted results in an increase in survival time. She passed away two years after her diagnosis, but critically was able to access treatment that did not affect her quality of life, something that cannot be said for the treatment that would have been available in the UK.

Zoe’s husband told me:

“When you are handed a death sentence, your risk appetite changes.”

Zoe, along with the countless other patients who have reached out to me with a range of cancers and terminal illnesses, whose stories I wish I could share with the House, should never have had to travel for her treatment.

Margaret should never have had to travel. We know that in many cases individual treatment has been proven to lead to people surviving for far longer than their original prognosis. I can say with confidence that it did so for Margaret. It provides hope that we simply do not get from our current health system. That is why I propose we extend the opportunity of individual treatment programmes to the thousands of people with a terminal diagnosis in the UK. We must end the cruel practice of forcing our most vulnerable to travel overseas to access better care, at huge expense.

It is clear that legislation is needed to protect our doctors and to allow them to progress with the best standard of care. At the very least, we need to end the culture of fear among medical professionals in this country with regard to experimental and individual treatments, so that they can inform their patients of options that could lengthen their life expectancy. As Zoe’s husband said to me:

“Patients do not want the fatalism that many in this field have. Realism is fine, but no-one has the right to remove hope from a patient.”

This Bill would bring that hope back to thousands of people.

Question put and agreed to.

Ordered,

That Dame Siobhain McDonagh, Jim Shannon, Uma Kumaran, Peter Lamb, Luke Murphy, Rachael Maskell, Tonia Antoniazzi, Valerie Vaz, Mary Glindon, Sorcha Eastwood, Helena Dollimore and Natasha Irons present the Bill.

Dame Siobhain McDonagh accordingly presented the Bill.

Bill read the First time; to be read a Second time on Friday 17 January, and to be printed (Bill 139).