National Health Service

Lord Freyberg Excerpts

Thursday 14th January 2016 Lords Chamber

[Lord Freyberg (CB)]

My Lords, this debate is about present and future demand and how we best manage it. In doing so, we need to include all rare disease, not just the big killers. Individual rare diseases may not kill many, but collectively they are a significant part of the disease burden.

Mesothelioma is such a disease. In the recent mesothelioma debate, the Government confirmed that 60,000 are expected to die from that terrible disease over the next 10 years. An international comparison by the Eurocare group shows that the UK survival rate at one year is 36%. Sweden’s is 46%. In other words, one in 10 patients more dies here than in Sweden, or 6,000 lives over the next 10 years. The disease is identical and the treatments identical. This is therefore a matter of care quality management.

We see this pattern across cancer. The British Journal of Cancer published the latest international performance assessment. Here is a sample of the one-year survival rates for 2005 to 2009. In lung: Sweden 41%, England 31%. In colon: Sweden 82%, England 73%. In ovarian, Sweden 79%, England 64%. This sounds remarkably like the England football team’s latest performance against Sweden. Perhaps, as in football, we should turn to Sweden for management advice.

Sweden has driven improvements in its service not by chucking more money at the problem but in the way it manages the service. Hospital quality is published at a granular level, not some meaningless general level. Patients with a specific disease know which hospitals to avoid. Some of your Lordships will recall the Colchester cancer scandal. What did not come out in the media at the time is that the East of England Cancer Registry foresaw such an issue many years before in research showing that smaller centres had worse outcomes than larger ones. They may still do, but who is to know without the data?

Yesterday I tabled a number of Written Questions for the Minister on the data that the Minister already has in the National Cancer Intelligence Network in Public Health England, which could help patients to get better care if it was published, such as cancer-specific hospital performance data. I am sure that the Minister would agree that these are important issues, and that the reasons they are not being published should be investigated. Once these investigations have happened, will the Minister agree to meet me—I would be grateful if the Minister could reply on this point in his wind-up—to see how these results could be put into the public domain? I believe that these figures are an important component in seeing improvements in cancer care.

Mesothelioma (Amendment) Bill [HL]

Lord Freyberg Excerpts

Friday 20th November 2015 Lords Chamber

[Lord Freyberg (CB)]

My Lords, I support the Bill and I, too, congratulate the noble Lord, Lord Alton, on bringing this issue back to Parliament following its narrow defeat in this House in 2013.

Like the noble Lord, Lord McNally, my interest in this subject is personal. Just over three years ago, in June 2012, my sister, Annabel Freyberg, a journalist, was diagnosed with mesothelioma. Her diagnosis followed one month after the death of her nine year-old daughter, Blossom, from a particularly virulent cancer, neuroblastoma. The process of her diagnosis was long delayed as the symptoms of her severe lung problems were initially put down to pneumonia and stress. Over the next 18 months there followed a succession of treatments: a course of chemotherapy; attempts to join various drugs trials; and introductions to different specialists who might have been able to operate on the tumour, but, sadly, by then it had progressed too far for this to be possible. On 8 December 2013 she died, aged 52, leaving behind her husband, Andrew, and her 13 year-old son, Otto.

Statistically, Annabel is an anomaly—one of only 415 women out of 2,538 people who died of the disease in 2013. Most people with mesothelioma are men in their late 70s who worked in areas such as the building industry and were exposed to asbestos. It is rare for a woman in her early 50s to have the disease. To this day we still have no idea where and when she came into contact with asbestos. However, for many women and their children, the link is all too clear and especially cruel. As the noble Lord, Lord McNally, and others have said, they are the wives exposed to deadly asbestos fibres while washing their husband’s clothes, or children exposed to asbestos after greeting their fathers from work.

One of the troubling aspects of Annabel’s illness, which was highlighted by successive visits to oncologists, was how little research there was into mesothelioma, as with most of the rarer cancers. It is surprising that although the UK has the highest rate of the disease in the world, relatively little is spent on research in the UK, measured against other cancers of comparable mortality. As the noble Lord, Lord Alton, and others have already mentioned, the British Lung Foundation estimates that in 2014 only £860,000 was invested in mesothelioma research by its partners, compared with £9.9 million for skin cancer. The consequence of this was that many of the trials available to Annabel took place outside the UK.

However, the story of consultant anaesthetist Andrew Lawson, who survived seven years with mesothelioma, shows that it does not have to be this way. Given a year to live, he investigated the evidence and took advice from colleagues from all round the world. There followed three operations and six different chemotherapy courses. He signed up for clinical trial gene therapy treatments in Philadelphia and dendritic cell vaccine treatment in Holland. At his own instigation, he was the first mesothelioma patient in the country to have regular treatment with intravenous bisphosphonate after promising results on mice in Western Australia. Of course, none of these is readily available on the NHS and, indeed, most patients are simply not told about such trials or know of such basic research.

However, it demonstrates the need to rethink how we carry out our research. The present system of trials is far too slow, too expensive and unsuited for rarer cancers such as mesothelioma. The fastest way to save lives is to see if the drugs for common cancers work on the rarer ones as well, given the shared mechanism of disease across cancer. This is off-label research and until we fix the issue of liability, as advocated by the noble Lord, Lord Saatchi, we will continue to send thousands, like my sister, to an early grave.

One promising aspect of my sister’s treatment, however, was an early use of broad-panel molecular diagnostics. There was no facility in the UK at the time to do this and so her tumour sample was sent to America, where her DNA was genotyped. The results were very revealing but, in her case, proved too late for her to benefit. She had started a course of cisplatin, the standard cancer treatment for the disease, to which she had an adverse reaction. The test results, which we received five months later, suggested that that would happen as she was not suited to the drug and should not have been given it.

I was pleased to read that in Cancer Research’s strategy paper for 2015-20, Achieving World-Class Cancer Outcomes, a key recommendation is the use of such diagnostics to improve cancer treatment. I hope this will be facilitated, for without it we will give many more patients like my sister expensive, toxic and ultimately futile therapies. More importantly, I hope that the data from such national molecular tests can be gathered into SACT, the national database in Oxford which tracks cancer outcomes. This will only improve survival rates and provide, if properly managed, a powerful resource for clinical research.

I warmly support the Bill and hope that it will have an opportunity to be enacted.