The UK has the world’s highest incidence of mesothelioma, which is a treatable but terminal cancer caused by asbestos exposure.
US research has suggested that there is a high incidence of mesothelioma amongst Armed Forces veterans, but to date there has been a lack of evidence as to the experience of UK veterans living with mesothelioma and the additional challenges they may face. The Military Mesothelioma Experience Study (MiMES) aims to help address these gaps.
Anecdotal evidence has long suggested that former service personnel living with mesothelioma face particular challenges in accessing support services, and in navigating the military and civilian health, legal and welfare systems. There is, for instance, a separate Armed Forces compensation system, which differs from the damages entitlement for civilian patients. Lisa Booth, Armed Forces benefits advisor, at Mesothelioma UK, explains:
‘There is an Armed forces compensation Payment of £140,000 but this is only payable with an in life signature and sadly there is no provision for a posthumous claim’.
Until MiMES however, there had been no UK study investigating the unique difficulties faced by veterans following a mesothelioma diagnosis. Now, MiMES provides a greater understanding of the experiences and health/support needs of Armed Forces personnel living with mesothelioma and looks at the role that mesothelioma nurse specialists, and specialist groups can play in providing support.
13 UK veterans from all three branches of the Armed Forces and living with mesothelioma, were interviewed for MiMES together with their families. Topics included the veterans’ service history, their journeys from symptoms to diagnosis, and their current health, treatment and care. Of particular interest in respect of legal claims, this included a discussion on the veterans’ awareness of asbestos, and upon claiming damages.
Following the interviews, a thematic analysis was applied to the results. The data indicates that many veterans’ experiences reflected those of the wider population of mesothelioma patients, but that the following themes were influenced by veterans’ military backgrounds:
1. Asbestos exposure and awareness
Most veterans had been unaware of the risks of asbestos at the time of exposure, but awareness had developed over time. For some, especially Naval veterans, this had led to a growing concern that they would be affected in the future, resulting in a resigned reaction at diagnosis. Exposure to asbestos had occurred both in traditionally high-risk areas, such as ships’ engine rooms, but also occurred when living in areas contaminated with asbestos, both at home and abroad, which included living and working near bombed buildings.
This diversity of sources highlights the importance of needing a professional with experience of both working with veterans and a knowledge of asbestos, to conduct an occupational history. Specific questions need to be asked in order to identify the range of possible sources of exposure within the Forces and to establish whether asbestos exposure occurred solely within their military service or if they had also been exposed during their civilian lives. In the former case, veterans are likely entitled to a War Pension only, whereas had exposure also occurred outside of the Forces, then a legal claim may be possible, too.
2. The use of military strategies to cope with diagnosis
Many veterans drew on their military experiences to generate resilience which helped them to cope with their diagnosis. Coping strategies they had developed whilst serving, such as making life or death decisions quickly and with confidence, resulted in action-focused decisions; following diagnosis, many veterans made swift decisions to move nearer to family or to take part in treatment and trials. This contrasts with findings of civilian patients which show that many react with stoicism but little action.
The veterans’ military identity gave them a sense of strength and pride in maintaining independence, but may have inhibited their access to emotional and physical support. There was a prevailing attitude of having to ‘get on with it’ and a belief that avoiding emotions was an acceptable coping strategy. Moving forward, the study recommends that health care providers and support groups should be aware of this and tailor support in a way which is acceptable to veterans.
3. Preferences for information and support
Relationships formed in the military based on shared experiences are important to veterans who relied upon and provided support to one another. The veterans interviewed had a sense of duty to others who had served in the forces, and as veterans benefit from support through the wider military family, referrals to local veterans’ organisations are important following a mesothelioma diagnosis.
The veterans valued the specialist mesothelioma and asbestos information provided by professionals too, in particular their mesothelioma nurse specialists who play a vital role in helping them navigate the NHS. Veterans find the NHS less efficient and more confusing than the standardised and structured military health system. They preferred clear and honest delivery of information, even in the case of bad news, but the study advises that sensitivity is required when discussing asbestos exposure which may have occurred during distressing events such as combat.
MiMES adds to the growing body of research on the lived experiences of mesothelioma patients, and helps to give veterans a voice. Lisa Booth notes that the data ‘captured has been invaluable in helping with research’ and will assist us in supporting veterans living with mesothelioma into the future. It shows there are specific challenges and care needs related to mesothelioma veterans which health care providers and support groups should be mindful of. The study confirms that further research is needed to better understand the care needs of veterans and their families but at this stage the findings have the potential to influence care provision and so the MiMES team have worked with Mesothelioma UK to develop recommendations for practice.
Of relevance to legal practitioners, the findings suggest that, for some veterans, discussion of exposure could bring back distressing memories. The quality of the occupational history can have both financial and emotional implications however and so a referral to an experienced professional to take occupational histories is required, with a referral option for psychological care where appropriate. Practitioners should also consider the difficulties which veterans can face when accessing support and navigating the NHS, and work with mesothelioma support groups and health care professionals to ensure that veterans’ unique needs are met.
Here at Hugh James, we believe that anyone diagnosed with mesothelioma should be directed to a specialist solicitor, regardless of their recollections as to exposure. Even veterans who cannot recall civilian exposure should seek legal advice as we have expertise in helping patients to establish how and where they came into contact with asbestos dust. In situations where it is clear that exposure was military only, we will swiftly sign-post veterans to Lisa Booth, who has worked closely with Veterans UK to establish a quick and effective referral system, ensuring that any veteran diagnosed with mesothelioma has access to the Armed Forces compensation payment along with any other benefits they may be entitled to. Where veterans might also have been exposed to asbestos during their ordinary working lives however, the potential damages payment obtained through a legal claim could be invaluable in access to private medical treatment, and the provision of financial security to families.
