Living with Asbestos Disease – Who Cares for the Carers?

Asbestos diseases cause significant suffering in those affected. They are often debilitating and life-changing. In the case of mesothelioma (a cancer of the thin tissue covering the lungs, or in rarer cases, the abdomen), it is always fatal.

Patients with asbestos disease frequently require care.  I was thinking about this a few weeks ago when speaking to a client about the care and assistance they need since being diagnosed with mesothelioma. It suddenly crossed my mind – who cares for the carers?

All carers need support

Carers desperately need support, too, whether that be in the form of a break or help. I spoke to Simon Bolton, the Mesothelioma UK Clinical Nurse Specialist for the West & North Yorkshire region.

During our conversation, Simon suggested that health care professionals are not always the best at caring for themselves. However, he pointed out they are more fortunate than ‘lay’ carers (such as close family members and friends).

They can often open up to their colleagues. And they can get support from their peers and co-workers. Many hospitals have clinical psychology teams, providing professional help to nursing and healthcare staff and patients.

Clinical psychology is a scarce resource, often with long waiting lists.  In Simon’s Trust, the psychology team runs a monthly support group meeting, but this does not cater solely for the lung & mesothelioma team. Other nurses go who help patients with different types of cancer.

The time available is limited to one hour per month and is essentially an open forum where nurses and other healthcare staff can talk frankly about challenging cases and situations.

Simon admits he feels nurses often go the extra mile to meet the needs of those they care for. He says that most of the cancer nurses he has worked with over the years work longer hours than they are contracted to do.

He says: “Most of us have come home late and missed reading our children a bedtime story or worse still, turned up late at the school gates long after all the kids have gone home!”

Simon is keen to point out that nurses receive training on how to provide empathetic, professional care so that they can support their patients as much as possible, minimising the risk of emotional burnout. There’s a real sense of pride in knowing that their jobs make a difference.

 Caring for mesothelioma patients’ families

Simon feels for the families of patients with asbestos-related diseases who are often left to meet their patient’s needs while dealing with their shock and sense of impending loss. This is particularly the case in the early days of a diagnosis, where they invariably have less access to professional support than the patient.

Lay carers do not always have access to the expertise of clinical psychologists. Nor do they have specialist healthcare training. And of course, it can be an extremely stressful and distressing time watching a loved one struggle and deteriorate due to asbestos disease.

Mesothelioma support groups can help

Simon believes lay carers, such as family members, need the maximum support available. Fortunately, organisations such as Mesothelioma UK have made an enormous difference. The charity provides specialist information, advice, support, and education. It has improved care and treatment for all UK mesothelioma patients and their carers.

In addition, there are several patient-dedicated mesothelioma support groups nationwide, but it is very rare to find a support group that focuses on carers alone; a place where a carer can find someone to lean on for help in dealing with the issues they face daily.

While there are fantastic bereavement services available for those left behind when tragically, patients die, carers need full support while their loved one is still alive.

In my view, more needs to be done to help and support families as they cope with the day-to-day challenges of caring for loved ones with asbestos disease. That help far too often comes too late.

Alan Jolliffe is a Senior Litigation Executive specialising in asbestos disease claims based in our Southampton office. If you or a family member has been diagnosed with mesothelioma, Novum Law has the experience and expertise to help you make a compensation claim. Call us on 0800 884 0777 or email info@novumlaw.com.