A new mesothelioma research survey has been launched, which is aimed at a better asbestos awareness and understanding of present diagnosis, treatment and care of the fatal disease by asking patients and their families to answer questions on their own experiences.

MPs, victim support groups and asbestosis lawyers, alike, were most disappointed to learn that the recent third reading of the Mesothelioma Bill not only placed significant restrictions on claims eligibility but also failed to secure “sustainable future funding” for much needed research. Concern led to MPs signing a letter emphasising the importance of increasing research and a parliamentary debate followed.

During the debate it was pointed out that Government was “looking at” organising meetings with the Association of British Insurers and the British Lung Foundation – who invested £1 million into mesothelioma research in 2011 – to consider how insurers could “help” to fund research.

Need for increasing research continues to be an urgent issue

However, for the 2,000 victims of the currently incurable mesothelioma cancer diagnosed every year in the UK, the need for increasing research continues to be an urgent issue. Despite the ban on the most toxic blue and brown asbestos types in 1985, and the halt on white asbestos imports in 1999 the prevalence of mesothelioma has increased in the UK almost four-fold in the last 30 years.

In 2013, the Health & Safety Executive (HSE) reported that the UK’s annual mesothelioma death rate had increased to 1,967 by 2010, rising to 2,291 deaths in 2011, one of the highest figures, worldwide, and is forecast to continue over the next ten years at least.

In December 2013, a Mesothelioma research project was begun, funded by the National Institute for Health for the Priority Setting Partnership, a group created “ to identify unanswered questions about mesothelioma treatment” asked by patients, families and healthcare professionals.” The Department of Health have also underlined that “It is vital that we gather and listen to the views of as many people as possible so everyone knows the topics that are a priority for clinical research.”

Men and women with “unanswered questions”

The Priority Setting Partnership Mesothelioma Survey wants to hear from men and women with their “unanswered questions” regarding diagnosis, treatment or care, especially if they are:

  • diagnosed with mesothelioma
  • a carer or family member of someone with mesothelioma
  • a bereaved carer or family member of someone with mesothelioma
  • a healthcare professional working with people with mesothelioma
  • an organisation representing the interests of people with mesothelioma

The Partnership will look at each question and check to see if existing research already exists to provide an answer. Those questions, which have not been previously answered by research, will go through a process of prioritisation involving patients, carers and healthcare professionals.

The survey – supported by a number of organisations including Mesothelioma UK – runs until the end of April 2014, after which time, all survey responses will be analysed to identify the top ten “priority” issues for research development.

Click here to take part in the Mesothelioma Survey and read more about the research project at the Priority Setting Partnership website.