In the final months in the life of former Labour general secretary Margaret McDonagh, she embraced the solace and pleasures found in family, friends and travel, enjoying the peace of the shores of Lough Corrib in western Ireland, winter sunshine in Málaga and a cruise to France and Spain.
In June, her sister Siobhain McDonagh, a Labour MP, was planning a party for her sister’s 62nd birthday, with a barbecue and marquee in the garden in the home they shared together in south-west London.
Margaret, who was made a life peer in 2004, died from brain cancer two days before her birthday, and the day before the celebration to mark it, at home with her sister by her bedside.
“She touched so many people’s lives,” said Siobhain. “In the weeks afterwards I would get letters every day from people I had never met, who told stories of what she’d done for them and the confidence she gave them.”
Siobhain supported Margaret throughout her illness, taking her to Germany for an innovative treatment in the hope of extending her life. She was stunned that the five-year survival rate in the UK for someone with brain cancer had barely improved over a generation. The average survival time for patients with glioblastoma is 12-18 months and only 5% of patients survive more than five years, according to the Brain Tumour Charity.
She said: “The treatment [after surgery] is eight weeks of radiotherapy, and then as much chemotherapy as you can take. This treatment hasn’t improved in 30 years. If you can’t take the chemotherapy or if you come to the end of it, and want further treatment, it’s got to be not just outside the NHS, but outside the country.”
The MP is to introduce a 10-minute bill this month setting a target for the number of brain tumour patients who take part in trials, and requiring that oncologists be trained in brain cancer.
Margaret, the first female general secretary of the Labour party, was diagnosed with glioblastoma after collapsing with a series of seizures in November 2021. It is a condition for which there is no cure and limited treatment. About 3,200 people are diagnosed in the UK each year with glioblastoma, which is the most common high-grade primary brain tumour in adults.
Margaret had an operation in December 2021 at the National Hospital for Neurology and Neurosurgery in London to remove as much of the cancer as possible. The treatment was followed by radiotherapy and chemotherapy. Margaret was suffering from an infection, and her kidneys were struggling to cope with the chemotherapy. There were no other treatments available on the NHS and the family feared more chemotherapy might kill her.
As Siobhain said in a moving speech in the House of Commons in March: “There were no alternatives. There are no trials, and there is nowhere to go.” She said the only available options were “the private sector and international travel”.
The family paid for her to be treated privately with two drugs, nivolumab, an immunotherapy drug, and Avastin, a tumour-starving therapy. These drugs are not available on the NHS for brain cancer. The cost was about £6,000 a month.
In March 2022, the two sisters also started attending a clinic in Düsseldorf, Germany, for hyperthermia treatment, which involves heating the tumour to enhance the effects of drug therapy. Several clinical trials have shown that hyperthermia helps shrink tumours and makes it easier for the cancer cells to be killed.
Siobhain, MP for Mitcham and Morden, said: “It was a small European clinic. Margaret would lie on a waterbed and there would be a metal plate and they would place it on the head where the tumour is. It is a heat treatment. It would be an hour or an hour and a half.” It was a gruelling schedule of travel and treatment.
The combined drugs and therapy appeared to help curb the progress of the disease, with one scan in June 2022 showing no sign of the tumour. But by early this year, it was growing and taking a serious toll on her health. Her mobility was significantly impaired and she was increasingly susceptible to infections.
Siobhain and Margaret were brought up in south-west London by Irish parents, Cumin, a labourer, and Breda, a NHS psychiatric nurse. Their parents are now dead and the sisters lived together in south London, relishing their network of friends, political colleagues and extended family.
The sisters enjoyed breaks with friends and family during last winter and the spring and early summer of this year, interspersed with trips to hospital units to cope with the infections. Margaret died at home on 24 June. She was described by Daniel Finkelstein, the journalist and Conservative peer, as “one of this country’s great political organisers, certainly one of the greatest of the past 40 years”.
Siobhain said: “I am relieved that mum and dad died before this happened to Margaret because they would have been devastated. I don’t think they would understand that the NHS didn’t have any treatment for her. No drug trial. Nothing.”
She said she felt fortunate the family had the resources to pay for private treatment and support care. She said: “I feel angry for all those people who can’t do what I did. How can we be in the 21st century, and a whole area of devastating illness having almost no attention at all?”
Paul Mulholland, a consultant in medical oncology at University College London hospitals NHS foundation trust, who treated Margaret privately, supports Siobhain’s campaign and says some drug firms are reluctant to provide drugs for trials because they say it is not financially viable to develop treatments for glioblastoma. He said: “The tumours that are less common get left behind. The treatment will be the same in 10 years’ time if we don’t do trials. We need to partner with the NHS and the pharmaceutical industry to get the trials for brain cancer patients.” He believes an effective treatment can be found within seven years with a comprehensive schedule of trials.
Siobhain said she had been contacted by several people who are coping with the effects of brain cancer and has been in touch with patients or their relatives campaigning for more options for those who have been diagnosed. They include the family of Shay Emerton, who are campaigning for the NHS to give early access to a drug that can slow the growth of brain tumours.
“We all are bewildered that there is just nothing there,” said Siobhain. “And we can make things better.”
