A recently published study undertaken by the team of experts at the Mesothelioma UK Research Centre in Sheffield looks in depth at the mental health and wellbeing implications of a mesothelioma diagnosis for both patients and their informal carers, based on previous research experience, reviews of the existing literature, and surveys and interviews with those affected.

Of course, everyone is an individual, with individual requirements, and each person’s experience will be different. But asbestos-related cancer has some unique features, and the report highlights the ways in which these contribute to the negative psychological impact of the diagnosis and identifies high levels of anxiety, depression and posttraumatic stress in mesothelioma patients and informal carers.

For many, the diagnosis of an asbestos-related condition comes as an enormous shock, often after a protracted period of stressful investigation, followed by intrusive treatment and periods of intense anxiety/’scanxiety’ while waiting for results of scans and investigations. At the same time, patients are coping with physical symptoms and a worrying prognosis. There is fear around the condition dictating the terms of their existence and robbing them of their independence. Many carers would say that their role is rewarding, and the services they provide are through love and affection, but there is no doubt that it can take an enormous emotional, physical and financial toll.

This is one of the reasons why organisations such as HASAG – born out of a fierce desire to support and inform those affected by asbestos-related disease and their families – are so crucial. Countless people describe their relief at speaking to experienced, compassionate HASAG representatives who understand the impact of the diagnosis, take on responsibility for state benefit applications, and provide information about the dedicated specialist help that is available as well as a sympathetic ear.

For many, the sense of community provided by HASAG coffee mornings and other events, along with the opportunity to share their stories and seek advice and guidance from a specialist nurse in an informal and friendly setting is a lifeline.                

In recognition of the importance of providing specialist help to those suffering from anxiety, frustration and deteriorating mental and physical health through facing the implications of an asbestos-related illness, HASAG offers a free, professional counselling service, staffed by highly qualified counsellors with considerable experience in supporting individuals and their families in these circumstances.

HASAG also works closely with the brilliant specialist lung cancer nurses who have a key role in providing high quality medical care and support. Rachel Thomas, who for many years worked as a mesothelioma and lung cancer nurse at Guy’s Hospital, was appointed last year as HASAG’s Mesothelioma Nurse Specialist, in collaboration with the network of specialist mesothelioma nurses throughout London and the South. She brings her skills, experience and enthusiasm to helping and supporting patients and carers in navigating their way through the challenges they face, through visiting them at home, signposting them to services of which they might otherwise not have been aware, advising about care and treatment and simply listening. She can also explain, in straightforward terms, medical trials and the background to potentially misleading headlines. Patients and carers have said that after speaking to specialist nurses they feel empowered, and confident in their interactions with medical staff.

Last and, in this context, probably least, are the lawyers. To be considered for HASAG’s specialist legal panel, solicitors must demonstrate absolute commitment to representing those faced with asbestos disease, and many years’ experience in doing so. One of the issues raised in the Sheffield report relates to the additional anxiety that the prospect of a legal claim can bring, particularly as most of those affected will never had to engage in litigation before. Aside from ensuring that patients and their families recover as much as they can, for example, to pay for equipment to enable continued independence, and guarantee long term financial provision, the role of the lawyer is to make the process as straightforward and stress-free as possible.