Mesothelioma

Baroness Warwick of Undercliffe Excerpts

Thursday 27th October 2016 Grand Committee

[Baroness Warwick of Undercliffe (Lab)]

My Lords, I had always associated mesothelioma with the construction trade. It came as a complete shock that a dear friend—Sylvia, a retired maths teacher, an energetic walker and a very active grandmother—should be diagnosed with the disease. It may well have been contracted 50 years ago when she worked as a teacher in west Africa. It was even more of a shock to discover that it was a death sentence. Sylvia died a troubled and dreadful death five months later. As her husband Geoff said, “This cancer doesn’t allow for peace. There are more sorts of pain than those that can be, and were, dulled by opiates”.

What shocked me almost as much was the struggle of medical researchers to raise money to find improved treatments for the disease. The British Lung Foundation —BLF—and Mesothelioma UK have campaigned tirelessly for more research but with only limited success. Do funders regard it as a marginal cancer? Perhaps they think it will be reduced over time because products containing asbestos were banned in the UK in 1999. How have we become so complacent? Some 2,500 people in the UK are predicted to die each year of mesothelioma. The incidence is increasing, as has been mentioned, for example among schoolteachers. How have we become so blind to the immense suffering of those who contract the disease and of the families who care for them? Although we can hope that the rate will eventually decrease, no such hope is available in developing countries where asbestos continues to be used and where committed people just like my friend Sylvia will continue to work, as will countless members of the local populations.

Research is key yet the BLF’s figures show that funding is absolutely parlous compared with other cancers that kill a similar number, and even the published figures are thought to be an overestimate. I talked to the NIHR Biomedical Research Centre at UCL—I declare an interest as a member of council at UCL. UCL, along with Leicester and Barts, is doing innovative and exciting work with a small amount of funding into genomic damage which might lead to targeted new treatments. Other centres are similarly innovative. How much more could be done if they were better funded?

Companies such as Hugh James, Simpson Millar and Shield Environmental Services have donated. Insurers have helped in the past. Two which have already been mentioned, Aviva and Zurich, have increased their contribution to £1 million over two years, but the final grant is this year. The £5 million grant from the Government this year for a national centre for research is indeed welcome. I hope it will enable increased collaboration with other centres, but it will take £5 million each year to put mesothelioma on a par with other cancers, such as skin cancers, that have the same mortality levels.

A more sustainable model is required. Where is the rest of the insurance industry? Insurers are likely to pay out £11 billion in compensation to people who were exposed to asbestos in the workplace. If only a tiny fraction of this were donated to research, it would be transformational. Saving lives by donating to research could potentially save insurers millions. Will the Minister commit to some strong arm-twisting to persuade the industry to make this a comprehensive and permanent commitment, if necessary on a statutory basis?

I want to make a final point about the carers of those affected. My friend’s husband Geoff said, “Sylvia’s progress wasn’t predictable, no routine could be established, every day involved new challenges”. He was part-retired and had a pension. Supported by the GP and the district nurse, he was able to provide the care that enabled Sylvia to live and die at home as she wanted, where her dignity was preserved in a way she felt it could not have been even in the kindest institution. If he had been on a limited income and had to go out to work, how would that have been managed? Will the Minister tell us what the Government are doing to make that kind of caring an option for anyone suffering a terminal illness of this kind?

Lyme Disease

Baroness Warwick of Undercliffe Excerpts

Thursday 22nd October 2015 Grand Committee

[Baroness Warwick of Undercliffe (Lab)]

My Lords, I thank the noble Lord, Lord Greaves, for introducing this debate and for his continued commitment to bringing this complex disease to our attention. As we have heard, many of us know someone or of someone who has experienced the distressing symptoms of Lyme disease. That is certainly what sparked my interest in the topic. The high public profile of some sufferers has meant that their stories and the controversies surrounding the disease have been widely reported in recent weeks.

Lyme disease has been in the UK since the late 1970s, but over the past decade cases of the disease have quadrupled. Public Health England suggests that there are some 3,000 new cases each year, although others put the figure much higher. We know the disease is transmitted by infected ticks, often on deer and mice, and they like grassland and leafy areas, so we are at risk whether we are walking on the Yorkshire moors or in London’s deer parks.

Lyme disease is on the increase across the UK, yet it is not diagnosed easily and there is a lack of adequate treatment. A common thread of the many cases we read about is that the doctors know very little about Lyme disease or have ruled out the diagnosis. Perhaps that is not surprising, given how new the disease is to the UK. Many doctors will simply never have come across a case. However, there is also division within the medical community on just about every aspect of this disease. Some think it is rare and easy to treat with a few weeks’ of antibiotics and that there is no such thing as long-term Lyme disease; others believe that it is becoming more prevalent and is much more difficult to treat than previously suggested, and that it can lead to severe chronic illness. Medical opinion in the UK has tended to the former view.

One complication is that symptoms can vary; not everyone bitten by an infected tick will display the so-called bull’s-eye rash. If this is the case, then what the doctor sees could be just a range of flu-like, non-specific symptoms, such as tiredness, muscle and joint pain, headaches, fever and chills, before more serious neurological or heart problems develop much later. Reliance on a diagnosis has almost exclusively rested on the blood test which detects antibodies to the disease. Yet these tests, as again we have heard, are too often inaccurate or unreliable, and even if antibiotics are prescribed the dose may not be strong enough, or the course long enough, to deal with the Lyme bacteria. UK cautiousness about overprescription of antibiotics is blamed for this.

It is good news that US researchers are making progress on developing a vaccine-like treatment, which would provide immediate protection against Lyme disease for the six months when the ticks are active. But until that emerges, the only way in which to prevent the disease is to avoid getting bitten. So it is vital that people are shown what they can do to protect themselves, and that GPs are given more information about the growing prevalence of the disease.

I am encouraged that the charity Lyme Disease Action and the Public Health England Lyme disease reference laboratory are now able to work together on difficult cases and equivocal test results. But more GPs need to be made aware of the testing facilities and expertise at the Government’s Porton Down laboratories. Public Health England currently recommends guidelines published by the Infectious Diseases Society of America, but we need UK and European guidelines to provide GPs with the full range of scientific evidence and medical opinion available. So will the Minister, on behalf of the Government, ask Public Health England to produce national guidance? We also need better diagnostic tests, more surveillance and more information about the scale of the problem. Can the Minister tell us what consideration is being given to whether Lyme disease should be given notifiable status by medical practitioners? Until we have greater GP and public awareness, more testing and earlier diagnoses, we will continue to have more chronic, life-changing cases of this complicated disease.