Cancer can be a frightening and difficult topic to cover, but with diagnoses and deaths increasing each year, we believe it’s an important conversation to have. We spoke to four of our associates who deal with care needs following a cancer diagnosis, about delays in treatment, life following a diagnosis, and what the future of cancer treatments looks like.
Caroline, Sally, Joan and Clare, thank you for taking the time to talk to us. Could you tell us a little about your experience within the field and your role at TGA?
Caroline Bear: I have considerable experience looking after people at end of life within the community and have prepared many reports in cases regarding mesothelioma claims including recommendations on end-of-life care.
Sally Parsons: I’m a nurse who specalises in the care of patients undergoing cancer treatments at home and I have prepared a lot of liability reports on extravasation.
Joan Gowans: I have both adult and paediatric clinical experience in caring for cancer patients. I have also completed a course in palliative care which was run by a hospice. I have been an Associate with TGA for approximately nine years.
Clare Fuller: I have extensive experience in looking after people with cancer from diagnosis to end of life. I have expertise in providing complex symptom management, holistic palliative care and care at the end of life.
Joan, can you give us some examples of the type of work/cases you typically take on through TGA?
Joan Gowans: My instructions are varied with adult cases more frequent than paediatric cases at present. I report mainly on mesothelioma, silicosis and asbestosis for adults. The children’s cases are very varied. Not only in the ages but also the types of cancers.
Do you see much commonality between the cases you work on, or does there tend to be big range of problems that require your expertise?
Caroline Bear: Typically, there is quite a lot of commonality in the mesothelioma cases that I report on.
Joan Gowans: There are many mesothelioma cases, which seem to be increasing week by week!
Clare Fuller: All cases require assessment through a holistic lens, a particular skill of palliative care.
Can you give us some examples of what clinical negligence might look like for someone who has received a cancer diagnosis?
Sally Parsons: There are a few cases of mesothelioma and also ambilateral amputee after they become septic after 1st chemo.
Joan Gowans: Some examples would be non-adherence to NICE and/or SIGN guidance, failure to follow clinical guidelines for example British Gynaecology Cancer Society, failure to follow local policies and protocols.
There’s been a lot in the media about cancer referrals, diagnoses, and treatments being delayed due to the NHS backlog – how is this impacting individuals with the disease?
Sally Parsons: The 2-week referral pathway helps a lot. A lot is late presentation and not late referral.
Joan Gowans: Many people are presenting with advanced tumours. I also have a friend who died whilst awaiting an appointment to confirm his diagnosis.
Clare Fuller: A delayed diagnosis can mean a reduced window of opportunity for curative treatment; this can obviously impact potentially a person’s life expectancy as well as their quality of life. In addition to physically impacting a person, a late diagnosis carries a psychological burden and can lead to feelings of anger and frustration.
How can someone’s life be affected during and after receiving cancer treatment?
Caroline Bear: This varies from person to person so it is hard to comment. It also varies depending upon the treatment received.
Sally Parsons: People can be affected financially, physically and mentally.
Joan Gowans: The impact varies. Financial issues can be a big worry for many families especially if it is the main breadwinner that is affected. If a child is affected, often the parents are missing from the family for extended periods of time as they may choose to stay with their child in hospital, leaving their other children in the care of relatives. In my experience a cancer diagnosis in a child is a devastating diagnosis for parents who often struggle to accept and cope with the treatment pathways. It is my experience as a paediatric nurse that the children and young people are more accepting even when the prognosis is poor.
Clare Fuller: Cancer treatment can be brutal to undergo with side effects including physical symptoms such as nausea, vomiting, hair loss, gastrointestinal disturbance, fatigue and pain. Longer term impact can include loss of sexual function, sterility, and adjusting to surgery such as a mastectomy or stoma.
With improvement plans in place for the NHS to treat patients more efficiently, how do you see the next few years looking for those who have a cancer diagnosis?
Sally Parsons: Cancer treatment is ever evolving. With the use of single agent monoclonals there can and are still side effects but a lot of the more severe ones are avoided.
Joan Gowans: According to the media there are long waiting lists for routine investigations and/or treatments. Although improvement plans for treatment are supposed to be in place, I am unsure how staffing shortages will be addressed as these have resulted due to a lack of investment in medical and nursing training for many years. It doesn’t matter how good your improvement plans are if you have no staff to deliver them! I believe that more people, if they can afford it, will purchase private care.
Clare Fuller: The new Health and Care Bill will see, for the first time, an explicit legal requirement for health commissioners throughout England to provide specialist palliative care to everyone. I hope this means a greater understanding of the role the palliative care plays from point of diagnosis in supporting a patient and their family.
Do you predict any big changes happening in terms of cancer treatments in the coming years?
Caroline Bear: There have been huge changes/advances in treatment for mesothelioma in the last few years – especially with regard to immunotherapy.
Sally Parsons: I believe the use of single agents and targeted therapy will become more commonplace.
Joan Gowans: Yes. Research is ongoing and new drug /treatment pathway trials continue. I am not sure what the impact of the cost-of-living crisis will be on research funding, as all charities appear to be struggling post pandemic.
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