Posted by Janette Rawlinson on Wednesday 16 May, 2018
Patient advocate and contributor to our latest patient booklet Janette Rawlinson offers her perspective on the National Lung Cancer Audit (NLCA) and the variation in lung cancer treatment that still exists in the UK.
Whilst I’m pleased to welcome the publication of the second National Lung Cancer Audit (NLCA): Key findings for patients and carers, I read the findings with curiosity.
The UK is well respected for linking datasets and collating information in one place – like an Encyclopaedia Britannica on the western world’s biggest cancer killer – yet it is still unable to explain the wide variations in service that patients experience. Data transparency should enable understanding and hopefully lead to future improvements.
Admittedly the NLCA only covers England and Wales, but I’m curious to understand the variations that are mentioned in the publication.
More women than men are opting for surgery. Why is this happening?Janette Rawlinson, patient advocate
The amount of well-established and verified clinical data from a number of sources across the country is building each year, including data on all treatment types, diagnoses, staging, experience of patients’ access to lung cancer nurse specialists and a whole host of other variables. Each trust verifies its data and a team of clinical leads then work to discover the details behind the bare numbers at their particular location for their patient population.
However, gathering data is only part of the story: the crucial thing is what we do with it. The ultimate goal is to investigate reasons for variability and to make improvements. It’s complicated....
I’m curious about the differences between the UK and other countries that seem to have better outcomes, including pulling forward the staging of disease, detecting more lung cancer earlier (when surgery is more likely to be offered) and working in different healthcare systems (e.g. where primary care does not necessarily act as the front-line gatekeeper to secondary specialist services).
Although access to clinical nurse specialists has improved, there is still a long way to reach the target.Janette Rawlinson, patient advocate
Bald statistics pique my interest, such as that more women than men are opting for surgery. Why is this happening? Are patients aware that ‘keyhole’ surgery is available for some people who previously may have been considered less fit for surgery? More men have chemotherapy and radiotherapy than women, why? Is it due to later stage disease? Are women more willing to undergo invasive procedures due to their lifetime experience with healthcare? Personal motivation and behaviour seem to be factors but these are ‘average’ statistics: does age or life stage play any part in such decisions?
What role, if any, is stigma playing in preventing patients from seeking help early? Do patients have enough information about people who recover after treatment to understand the implications before they select their own treatment? Although access to clinical nurse specialists has improved, there is still a long way to reach the target and there is still high variability – why?
I want to know that services are equally available and standardised for quality and safety across the country.Janette Rawlinson, patient advocate
Although clinicians and statisticians who read the National Lung Cancer Audit (NLCA): Key findings for patients and carers publication may well understand the ‘case mix variation adjustments’, as a patient advocate I want to know that services are equally available and standardised for quality and safety across the country, and that patients have the same treatment opportunities irrespective of whether they are seen at a specialist cancer centre, a district general hospital or elsewhere, and that their doctors (including their GP) are aware of the treatment implications.
I will be interested to see the impact on next year’s audit of the National Optimal Lung Cancer Pathway, ‘targeted low-dose CT screening for population at risk’ pilots, early diagnosis initiatives and other guidelines, as well as work by trusts and commissioners to explore the results, and action to improve next year’s results.
Janette Rawlinson, patient advocate