Today Kathleen Gillett of Dorset Macmillan Advocacy tells us about an online survey on what matters most for people affected by lung cancer and their carers:
People can use their experiences of health and social care, good or bad, to help make things better for others in the future. In health this is called ‘patient experience’ and the patient point of view is often sought through ‘patient engagement’ methods such as events or surveys. Patient groups and voluntary organisations sometimes call this ‘user involvement’. I’m still getting to grips with these concepts and it helps my understanding to try to explain them in plain English.
A national survey of cancer patients takes place every year called the National Cancer Patient Experience Survey and the latest survey should be published in the next couple of months. It contains useful data right down to individual local hospital Trust level.
There is currently a survey open specifically for lung cancer patients and carers (as well as a version for Health Professionals). The survey is being carried out by the UK Lung Cancer Coalition (UKLCC) which is a coalition of the UK’s leading lung cancer experts, senior NHS professionals, charities and healthcare companies.
Established in November 2005 to help to bring lung cancer out of the political, clinical and media shadow the organisation’s long-term vision is to double one year lung cancer survival by 2015 and five year survival by 2020. The ambition is underpinned by four key objectives including; to empower patients to take an active part in their care.
The report of the previous UKLCC survey which took place in 2013 Putting patients first: Understanding what matters most to lung cancer patients and carers will serve as a baseline to compare with the results of the new survey as many of the questions are similar. The Foreword to that report said the survey had ‘highlighted the need to promote and embed a more patient-centred approach to lung cancer care.‘
At Dorset Macmillan Advocacy we are looking at how we might better support people affected by lung cancer. We are talking to colleagues in the Health service about providing advocacy support to patients with suspected lung cancer to enable them to access the many important tests that they need as quickly as possible. These tests may take place at different locations and there might be several in the space of a week.
We were recently able to provide an advocate at quite short notice to accompany a person to a scan. The time spent waiting for the scan was usefully spent uncovering concerns and preparing questions so that at the consultation which followed the person was able to be proactive. We received very good feedback about the effectiveness of the volunteer’s support at this appointment from the patient, the consultant and the patient’s GP.
As an advocacy service we can amplify the voices of the people we have supported to date who are affected by lung cancer by asking if they would like our help to take part in the new survey (it is available online and can be downloaded as a paper document). We can also ask local Clinical Nurse Specialists for Lung cancer if they are completing the survey and let them know that if they have patients (or carers) who would like to take part in the survey but need help to do so then we may be able to offer support.
The survey is available via the pink coloured bar on the right of the UKLCC home page and the closing date is 27 June 2016.
Kathleen Gillett, Dorset Macmillan Advocacy
Older People Living with Cancer 