Mesothelioma Day is today. Neil Hodge reports on the push to raise awareness of the asbestos-related disease

CAMPAIGNERS, sufferers and their families will be taking to the streets throughout Britain today (Friday February 27) on behalf of Action Mesothelioma Day. Organised by a number of cancer charities and support centres, the event has three aims: to highlight the plight of those suffering from the disease, remember those who have lost their lives to it and make people aware of the dangers of asbestos exposure.

Mesothelioma is the most serious type of asbestos disease. It is a tumour on the outer lining of the lung and is usually fatal within two years of diagnosis. It is generally associated with amphibole (higher risk blue and brown) asbestos fibres and can arise from very low asbestos exposures, with onset typically 30 to 50 years after first exposure. It is generally believed that someone only needs to be exposed to one single fibre once in his lifetime for there to be the risk of mesothelioma developing. Medical research predicts that as many as 50,000 people could be affected by it over the next 30 years.

The dangers of asbestos were first recognised in Britain more than 100 years ago, but there was little appetite by employers or the Government to do much about it. In 1898, factory inspector Lucy Deane warned of the harmful and “evil” effects of asbestos dust. In 1900, Montague Murray performed a post-mortem on an unnamed worker who had worked for 14 years in the asbestos industry. His lungs were stiff and black with fibrosis caused by the inhalation of asbestos dust. The worker had previously told Dr Murray that he was the only survivor from 10 others in his workroom. Dr Murray reported his findings to a Government commission, but it was not until 1931 that the first legislation relating to asbestos was passed in Britain — one year after a Government report found that two-thirds of long-term workers for a Rochdale factory had asbestosis.

However, the asbestos manufacturers heavily influenced the 1931 Introduction of Asbestos Industry Regulations. These failed from the outset, because they applied only to a small minority of individual workers who were actually directly exposed to dust in asbestos factories and not those who were using asbestos-related products or materials, such as brake linings for trains. The controls were inadequately policed and enforced. In the meantime, the success and proliferation of products and materials containing asbestos meant that the core asbestos importing and processing industry grew and so did the ancillary industries manufacturing asbestos-containing products. The number of individuals exposed increases at a huge rate, especially from the 1940s, with continuing public ignorance (although not Government ignorance) as to the true dangers and effects of breathing in asbestos dust.

While links to more serious cancers were made through the 1950s and 1960s, it still took nearly 40 years from the first asbestos regulations in 1931 until rules controlling the amount of asbestos exposure were passed with the Asbestos Regulations of 1969 and the Health and Safety at Work Act 1974. Yet the use of asbestos was widespread up until 10 years ago when in 1999 the importation of white asbestos was completely banned (the importation of brown and blue asbestos had been banned in 1985), although the material could still be used legally until four years ago. Presently, under British law, millions of tonnes of asbestos located in buildings does not need to be removed if it has not been disturbed. Yet potentially millions of people could still be exposed to asbestos-related diseases if the material is not properly maintained or monitored.

The long latency period of diseases such as mesothelioma may have hindered more thorough asbestos regulation. For example, the total recorded number of asbestos-related deaths in this country in 1960 was only 31, compared with 1,503 in the mining industry. Hence the impetus for reform was more pressing in other areas. However, 700,000 people were employed in the mining industry compared to 15,000 in asbestos manufacture, so the actual frequency per employee was very similar (0.207 per cent compared to 0.215 per cent). A wider review of risk and safety in different industries could have saved many lives.

Retired prison officer Brian Beatson from Nottingham made the awful discovery that he may only have months to live after going for a hearing test last April. Walking up the hill to get to the surgery, Brian found that he had had to stop to catch his breath four times. A month later, he went to see his doctor again, complaining of breathlessness, and was referred for a chest X-ray. Within a minute of looking at it, the doctor asked him if he had ever worked with asbestos. “It was then that I started putting two and two together”, says Brian. “He told me there and then that I had between nine to 12 months to live. That was it. I had been diagnosed with having mesothelioma and I was going to die. I’d never even heard of the disease before.”

Like many other sufferers, Brian is unsure how, when or where he got the disease. He believes it is likely to have been from an 18-month placement as a painter in a Nottinghamshire-based power station in the late 1960s.

Brian was offered chemotherapy and originally opted to proceed with the treatment. But he quickly changed his mind. “I haven’t been able to face it”, he says. “I just didn’t want 18 weeks of discomfort and pain to have the possibility of another three months to live. It doesn’t seem worth it.” Even when he contracted pneumonia shortly after being diagnosed and was prescribed methadone by his oncologist, Brian has refused to take any medication. He says: “I want to be awake and aware of what is going on around me. I don’t want to feel drowsy or drugged up. Every moment now is precious.”

In December Brian, who lives alone, moved out of his house – he has been unable to sell it because of the collapsed housing market – to move into sheltered accommodation. When he originally contacted Gedling council asking to move, he received a letter saying that they would get back to him within 12 months – by which time he could be dead. The council later apologised for the “administrative error”.

Stephen Gillingham, 51, from Derby was working as an English language teacher in China when he noticed that his health was rapidly deteriorating – so much so that he could no longer climb the stairs of the school where he was teaching He returned to Britain on June 26 last year. Thinking that he was suffering from tuberculosis, he visited his doctor for an examination. On July 22, he was told that he had “stage 2” lung cancer and mesothelioma. Two weeks later, he was taking his first course of chemotherapy. The disease takes hold that quickly.

Shortly after he was diagnosed, Stephen had a visit from a Macmillan nurse. She spelt out clearly three ways in which he could die: he could have a coughing fit that is so bad it induces a heart attack; he could cough until he runs out of breath; or, if he is really lucky, he could have the morphine dosage turned up to such an extent that he dies in his sleep. “You really don’t get much starker than that”, says Stephen. “All these bankers and City spivs who are crying in their Porsches after losing their jobs and bonuses – I don’t have one ounce of sympathy for any of them. I’m dying – beat that.”

Currently, Stephen takes more than 30 pills a day to keep him alive, as well as being on an oxygen cylinder. He takes painkillers and two kinds of morphine to numb the pain; folic acid tablets to maintain his appetite; tamizipan to help him sleep; metoclopramide to reduce nausea and sickness; and lactulose to relieve constipation. “I hate taking these pills, but you have to stay alive”,

says Stephen. “I was told that I wouldn’t see last Christmas, but I did. I’m now hoping to see next Christmas and if the pills and the chemotherapy help, then

I have to do it.”