A few years ago, I submitted a blog about Mesothelioma, an aggressive cancer that is typically caused by the inhalation or ingestion of microscopic asbestos fibres – and how this was being contracted by people exposed to those asbestos fibres years, in fact, decades, later. Furthermore, I tried to explain how it’s used in the construction industry had been negligently prolonged, the numbers of people affected, and its non-curable devastation. Mesothelioma, and related Asbestos-linked conditions, were supposed to reach a peak in 2020, so I wanted to see what progress has been made in treatment, awareness and compensation. I was quite surprised by what I found.
A few years ago, I submitted a blog about Mesothelioma, an aggressive cancer that is typically caused by the inhalation or ingestion of microscopic asbestos fibres – and how this was being contracted by people exposed to those asbestos fibres years, in fact decades, later. Furthermore, I tried to explain how it’s use in the construction industry had been negligently prolonged, the numbers of people effected, and its non-curable devastation. Mesothelioma, and related Asbestos-linked conditions, were supposed to reach a peak in 2020, so I wanted to see what progress has been made in treatment, awareness and compensation. I was quite surprised by what I found.
Firstly, a quick re-cap –
- Mesothelioma kills over 5,000 people in the U.K. each year. More than twice as many as die on our roads each year.
- It is estimated that worldwide approximately 90,000 people die from Mesothelioma annually
- Asbestos was used everywhere. In Factories, in Public Buildings, Hospitals, Libraries and Schools.
- The first confirmed related death was in 1924. In 1967 the industry declared a voluntary ban on “blue and brown asbestos”.
- The use of all (white) Asbestos was eventually banned by the British Government in 1999.
Treatments
Currently, the most effective and reliable treatments include surgery, chemotherapy and radiation therapy.
Surgery
Surgery treatment will attempt to remove as much tumour-growth as possible. Not every person diagnosed will be a good candidate for surgery though. The mesothelioma may be too far advanced to remove completely, or a history of heart disease or other health issues could make the procedure too risky.
Chemotherapy
For decades, cancer patients have relied on chemotherapy, a treatment option that uses one or more drugs to shrink tumours and slow down the growth and progression of cancer. Chemotherapy research has seen promising results with newer and more experimental approaches.
At present, the standard initial treatment for mesothelioma is a combination of two drugs, pemetrexed and cisplatin. In 2016, clinical trials found that the addition of a third drug, bevacizumab, further improved survival in mesothelioma patients. This three-drug combination is currently the standard of care in France. It is considered an option for treatment in the UK and USA.
Radiation Therapy
Radiation therapy is another standard cancer treatment. This is often recommended to pleural Mesothelioma patients after surgery, although It can be difficult to treat as the cancer usually develops into many small tumours, not a single growth that can be easily targeted.
Multimodal Therapy
Although there is still no universally accepted treatment plan for mesothelioma, many studies have shown multimodal therapy, the combining of two or more treatments (Surgery, chemotherapy, radiation) offers the best chance of long-term survival. When combined, these treatments can extend survival longer than any single option given on its own.
Awareness
In the UK, charity Mesothelioma UK ( https://www.mesothelioma.uk.com/) provides specialist support and resources for those affected by mesothelioma, whether for the patient themselves or for their carers. They also fund the integration into the NHS of specialist mesothelioma nurses to ensure provision of the best possible care, as well as investing in research and access to clinical trials. Over the coming five years, Mesothelioma UK aims to continue to grow their support for sufferers of Mesothelioma by expanding specialist nursing teams and continuing to raise awareness of the risks of asbestos exposure, extending the research, and providing further support options for patients.
They are collaborating with other agencies and organisations who also aim to raise awareness of mesothelioma and asbestos danger.
UK Mesothelioma Alliance
https://www.ukmesoalliance.org/
Action Mesothelioma Day is an annual day to raise awareness and pay tribute to all those people living with mesothelioma. Each year, in July, events take place around the country and are attended by patients, carers, families and friends, and healthcare professionals.
The ceremonies vary but there are generally speeches and some way of honouring and remembering those who have died. The day is an important way of bringing people together for support and also for raising awareness of mesothelioma and the need for more research into it.
https://www.blf.org.uk/support-for-you/mesothelioma/action-mesothelioma-day
Compensation
The compensation for Mesothelioma patients, and the resulting palliative care, was tied up largely within the definitions of “Terminal Illness”. An All-Party Parliamentary Group (APPG) for Terminal Illness, following an inquiry into its legal definition, published a report on the impact of these definitions and the access to benefits for people living with the condition. The report, published in July 2019, contains the findings from this inquiry and gives 3 main recommendations on ways to change and improve the legal definition, and thus compensation and related palliative care. It is worth noting that, whilst the recommendations provided are positive, the comments on previous definitions and the subsequent benefits system are damning.
The Recommendations section of the report begins with : “The current system is out of date. It is not appropriate for the population we see in front of us and it discriminates against people who need benefits. The current legal definition of terminal illness is unfit for purpose. The requirement that death can be “reasonably expected in six months” in order to allow a terminally ill person access to benefits under the Special Rules has no clinical meaning and is out of step with the reality faced by people living with terminal illness in the 21st century.”
The first recommendation is for the definition of terminal illness to be changed in UK Law so that it does not have to be categorised with “6 months to live”, and that it is appropriate if it is the clinical judgement of a registered medical practitioner or clinical nurse specialist
The second recommendation centres around people with a terminal illness having to re-apply for benefits if they have survived for longer than three years. As the report states – “The fact that a small number of people with terminal illnesses survive for longer than three years – giving them more time to spend with their family, friends and loved ones and more opportunities to live their lives as fully as they can for longer – should be celebrated, and not be a cause for further stress and anxiety”
The third recommendation is unequivocal in its findings, and criticism. The recommendation is to cease the practice of non-specialist/non-clinical assessors from the Department of Work and Pensions (DWP) challenging and rejecting the medical evidence provided by the clinicians. The authors of the report go on to say :
“Healthcare professionals, who know their patients’ cases and circumstances, must be able to exercise their clinical judgment as to whether a patient has a terminal illness without being second-guessed by DWP assessors in an attempt to exclude those patients from access to benefits”.
Overall then, progress – if that is how we want to view it –is being made. It is unclear, though, how these recommendations have been taken forward. Improved treatment, through research and further clinical trials, is giving some patients more time to be with their families. Awareness, through the actions of charities and support groups, continues to grow. It is still called “the hidden killer” but at least it is legally required for people working in and on construction sites to be appropriately trained on asbestos and its presence. And the changes recommended on the terminology and status of the “terminal illness” diagnosis should mean a better standard of care for those patients suffering from, among many other diseases and forms of cancer, Mesothelioma.
A few years ago, I submitted a blog about Mesothelioma, an aggressive cancer that is typically caused by the inhalation or ingestion of microscopic asbestos fibres – and how this was being contracted by people exposed to those asbestos fibres years, in fact, decades, later. Furthermore, I tried to explain how it’s used in the construction industry had been negligently prolonged, the numbers of people affected, and its non-curable devastation. Mesothelioma, and related Asbestos-linked conditions, were supposed to reach a peak in 2020, so I wanted to see what progress has been made in treatment, awareness and compensation. I was quite surprised by what I found.
Firstly, a quick re-cap –
- Mesothelioma kills over 5,000 people in the U.K. each year. More than twice as many as die on our roads each year.
- It is estimated that worldwide approximately 90,000 people die from Mesothelioma annually
- Asbestos was used everywhere. In Factories, in Public Buildings, Hospitals, Libraries and Schools.
- The first confirmed related death was in 1924. In 1967 the industry declared a voluntary ban on “blue and brown asbestos”.
- The use of all (white) Asbestos was eventually banned by the British Government in 1999.
Treatments
Currently, the most effective and reliable treatments include surgery, chemotherapy and radiation therapy.
Surgery
Surgery treatment will attempt to remove as much tumour-growth as possible. Not every person diagnosed will be a good candidate for surgery though. The mesothelioma may be too far advanced to remove completely, or a history of heart disease or other health issues could make the procedure too risky.
Chemotherapy
For decades, cancer patients have relied on chemotherapy, a treatment option that uses one or more drugs to shrink tumours and slow down the growth and progression of cancer. Chemotherapy research has seen promising results with newer and more experimental approaches.
At present, the standard initial treatment for mesothelioma is a combination of two drugs, pemetrexed and cisplatin. In 2016, clinical trials found that the addition of a third drug, bevacizumab, further improved survival in mesothelioma patients. This three-drug combination is currently the standard of care in France. It is considered an option for treatment in the UK and USA.
Radiation Therapy
Radiation therapy is another standard cancer treatment. This is often recommended to pleural Mesothelioma patients after surgery, although It can be difficult to treat as the cancer usually develops into many small tumours, not a single growth that doctors can be easily targeted.
Multimodal Therapy
Although there is still no universally accepted treatment plan for mesothelioma, many studies have shown multimodal therapy, the combining of two or more treatments (Surgery, chemotherapy, radiation) offers the best chance of long-term survival. When combined, these treatments can extend survival longer than any single option given on its own.
Awareness
In the UK, charity Mesothelioma UK ( https://www.mesothelioma.uk.com/) provides specialist support and resources for those affected by mesothelioma, whether for the patient themselves or for their carers. They also fund the integration into the NHS of specialist mesothelioma nurses to ensure the provision of the best possible care, as well as investing in research and access to clinical trials. Over the coming five years, Mesothelioma UK aims to continue to grow their support for sufferers of Mesothelioma by expanding specialist nursing teams and continuing to raise awareness of the risks of asbestos exposure, extending the research, and providing further support options for patients.
They are collaborating with other agencies and organisations who also aim to raise awareness of mesothelioma and asbestos danger.
UK Mesothelioma Alliance
https://www.ukmesoalliance.org/
Action Mesothelioma Day is an annual day to raise awareness and pay tribute to all those people living with mesothelioma. Each year, in July, events take place around the country and are attended by patients, carers, families and friends, and healthcare professionals.
The ceremonies vary but there are generally speeches and some way of honouring and remembering those who have died. The day is an important way of bringing people together for support and also for raising awareness of mesothelioma and the need for more research into it.
https://www.blf.org.uk/support-for-you/mesothelioma/action-mesothelioma-day
Compensation
The compensation for Mesothelioma patients, and the resulting palliative care, was tied up largely within the definitions of “Terminal Illness”. An All-Party Parliamentary Group (APPG) for Terminal Illness, following an inquiry into its legal definition, published a report on the impact of these definitions and the access to benefits for people living with the condition. The report, published in July 2019, contains the findings from this inquiry and gives 3 main recommendations on ways to change and improve the legal definition, and thus compensation and related palliative care. It is worth noting that, whilst the recommendations provided are positive, the comments on previous definitions and the subsequent benefits system are damning.
The Recommendations section of the report begins with: “The current system is out of date. It is not appropriate for the population we see in front of us and it discriminates against people who need benefits. The current legal definition of terminal illness is unfit for purpose. The requirement that death can be “reasonably expected in six months” in order to allow a terminally ill person access to benefits under the Special Rules has no clinical meaning and is out of step with the reality faced by people living with terminal illness in the 21st century.”
The first recommendation is for the definition of terminal illness to be changed in UK Law so that it does not have to be categorised with “6 months to live”, and that it is appropriate if it is the clinical judgement of a registered medical practitioner or clinical nurse specialist
The second recommendation centres around people with a terminal illness having to re-apply for benefits if they have survived for longer than three years. As the report states – “The fact that a small number of people with terminal illnesses survive for longer than three years – giving them more time to spend with their family, friends and loved ones and more opportunities to live their lives as fully as they can for longer – should be celebrated, and not be a cause for further stress and anxiety”
The third recommendation is unequivocal in its findings, and criticism. The recommendation is to cease the practice of non-specialist/non-clinical assessors from the Department of Work and Pensions (DWP) challenging and rejecting the medical evidence provided by the clinicians. The authors of the report go on to say :
“Healthcare professionals, who know their patients’ cases and circumstances, must be able to exercise their clinical judgment as to whether a patient has a terminal illness without being second-guessed by DWP assessors in an attempt to exclude those patients from access to benefits”.
Overall then, progress – if that is how we want to view it –is being made. It is unclear, though, how these recommendations have been taken forward. Improved treatment, through research and further clinical trials, is giving some patients more time to be with their families and. Awareness, through the actions of charities and support groups, continues to grow. It is still called “the hidden killer” but at least it is legally required for people working in and on construction sites to be appropriately trained on asbestos and its presence. And the changes recommended on the terminology and status of the “terminal illness” diagnosis should mean a better standard of care for those patients suffering from, among many other diseases and forms of cancer, Mesothelioma.