Understanding what matters to lung cancer patients and carers

The United Kingdom Lung Cancer Coalition (UKLCC) is committed to providing a voice for lung cancer patients and carers, and ensuring that high quality, patient-centred services are readily accessible throughout the country. 

To this end, in June and July of this year we undertook a nationwide survey to gather information about patient and carer experiences of lung cancer care and services.  Without doubt, a key to improving patient outcomes is to understand what really matters to people living with lung cancer – and how their experience of living with lung cancer can be improved in the health and social care setting.   

The results of our survey were sobering.   Despite many respondents reporting a positive (in some cases ‘excellent’) experience of care, the findings revealed  worrying discrepancies between what people expect from their local lung cancer services and the actual care and treatment they received. 

Looking at a number of the survey’s key findings, for example, a large majority of respondents rated prompt access to hospital diagnostic tests as “very important”. However, only 54 per cent of those people surveyed said that this occurred through the care they, or the person they cared for, received, with only 64 per cent stating that they were referred in a timely manner.

In addition, although three quarters of the survey’s respondents described being given a care plan as “very important”, less than half (46 per cent) could confirm that they, or the person they cared for, had been offered a personalised plan with tailored treatment goals.

The general lack of support and information received by patients and carers – as well as ‘mixed levels’ of public and professional awareness about the disease – is also a concern   For example, almost two-fifths (38 per cent) of respondents confirmed that they had either simply been notified that their cancer had spread or were explicitly not told about the extent to which the cancer had spread.  Also, 40 per cent of respondents described the level of understanding of lung cancer demonstrated by their GP as “variable”, “not enough” or “not at all”.

These are just a number of the insights gleaned from the survey’s results, but the need to promote and embed a more patient-centred approach to lung cancer care is already very much apparent.  Our new report, Putting patients first: Understanding what matters to lung cancer patients and carers’ makes a series of recommendations with such an objective in mind. These include ensuring that all lung cancer patients receive a personalised care plan and that care providers produce action plans setting out steps to improve experiences reported by patients. 

We are working in partnership with policy-makers, and the NHS nationally and locally, so that all lung cancer patients in the UK can expect to receive the care and treatment that will make the biggest difference for them and their families.

To view the report in more detail, visit: www.uklcc.org

Richard Steyn
Consultant Thoracic Surgeon, Birmingham Heartlands Hospital
National Cancer Advisor & Chair of the UKLCC
Chair of the UK Lung Cancer Coalitio