Wales Cancer Patient Experience Survey

The full survey is on the Welsh Government site.  This is just the Foreword, by Mark Drakeford, Minister for Health and Social Services and Susan Morris, General Manager for Wales, Macmillan Cancer Support

Patients are experts in their own right. That is why this survey was commissioned and why we are pleased that so many people took the time to provide detailed feedback on the service they received.

A response rate of 69% means the views of 7,352 patients are contained within this analysis. The results provide a robust and comprehensive analysis of people’s experiences of cancer care in Wales. We must start, therefore, with a thank you to the patients who took the time to provide detailed answers to 74 questions on their care.

Overall, the survey results demonstrate a positive experience of cancer care in Wales. 89% of patients rated their care as either excellent (58%) or very good (31%), with only 1% saying care was poor. This is a very clear indication that overall experience is a good one and provides a high baseline for further improvement.

We were also pleased to see 81% of patients saying they felt they were treated as a whole person and not as a ‘set of symptoms’. Whilst there is room to improve on this figure to make sure that the 1 in 5 who did not feel they were treated as a whole person receive the care they need, it demonstrates that in large measure the commitment to person-centred care is feeding through to the delivery of services.

In the post-Francis world, there has been much focus on the quality of care provided by health care professionals and how we can make sure patients and their families are treated with dignity and respect. We are pleased that the survey showed that the vast majority of Welsh cancer patients surveyed (85%) said they were always treated with respect and dignity by staff, 87% had confidence and trust in the doctors and nurses caring for them and 94% said they had enough privacy when being treated.
However, there is more to be done to meet the holistic needs of patients. Whilst 68% of patients said they had discussed or been given information about the impact of cancer on work or education, only 51% said they had been given information about how to get financial help or benefits by hospital staff. The Macmillan report, ‘Counting the Cost of Cancer’, demonstrates the importance of these issues for patients. There is a clear need, therefore, to improve the knowledge of health care professionals to signpost people to appropriate information and support to meet their needs beyond the clinical.

Very evident in the results is the impact that a Clinical Nurse Specialist (CNS) or Key Worker has on the patient’s overall experience of care. Patients who had a CNS were more likely to be positive about their care in 59 questions in the survey. The overall rating of care as excellent or very good is 74% for those without a CNS, but rises to 91% for those who had a CNS. This is also clear evidence of the importance of having a named and skilled key worker supporting the patient on behalf of a wider team of professionals.

It is Welsh Government policy that every individual with a diagnosis of cancer must have a Key Worker. However, only 66% of the patients surveyed said they were given the name and contact details of their Key Worker with the variation between Health Boards ranging from between 58% and 75%. These results demonstrate the need for greater clarity in defining the role of the Key Worker and more consistency in its implementation across Health Boards. In contrast, 88% of patients said they had been given the name of a Clinical Nurse Specialist. There clearly is more work needed to understand the relationship between the roles of Clinical Nurse Specialists and Key Workers and how they can work with their colleagues to meet the needs of patients.

The survey demonstrates that, in very important ways, patients see different parts of the NHS working well together. 96% of patients said their cancer doctor had the right documents and 92% said their GP was given enough information about their condition and treatment by the hospital. However, only 65% said the different people treating and caring for them always worked well together. As the number of people living longer with and beyond cancer increases, and as care becomes more complex and personalised, it is more important than ever that care is coordinated across different hospital sites and across primary, community and secondary care as well as in social care settings.

One of the important pieces of information stemming from this survey is the level of variation between Local Health Boards and Trust, between hospital sites within Local Health Boards and Trust and the variation in experience between people with different types of cancer.

Responses are consistently more positive for those seen in Velindre Hospital in Cardiff and we must congratulate the Trust for its patient-centred delivery. Whilst we acknowledge that Velindre is a unique and specialist cancer centre, there is a clear challenge for the best practice and learning from this hospital to be shared and made the norm right across Wales.

The variation between tumour groups, or types of cancer, is also evident in the survey results. Breast cancer patients reported having a better experience than other cancer patients, whilst sarcoma, lung and urological cancers all reported a less positive experience. We must work with health boards to use this data to better understand why the patient experience is different and explore how the experience through the cancer pathway can be consistently good for all forms of the disease.

These results tell us that the focus on person-centred care, as set out in the Cancer Delivery Plan, is the right focus. Person-centred care and meeting the holistic needs of patients clearly impacts in a positive way on people’s overall experience of care.
The system on the whole is connected and does work together but we need to drive down variation between Local Health Boards and Trust across Wales as well as the variation between the experience of people with different types of cancer.

But why is having a good experience of cancer care so important? A good patient experience leads to patients feeling supported, respected and meaningfully involved in decisions about their care whether that’s at diagnosis, during treatment or after treatment has finished. It’s also important as it recognises that cancer affects the whole of people’s lives including the effect it has on family and friends. A study has also shown that a positive experience can reduce a patient’s length of stay in hospital and staff turnover, which can save the NHS money.

Whilst the overall experience of cancer patients in Wales is a positive one, the results of this survey identify clear challenges and areas for improvement. It is now the task of Local Health Boards and Trust with the leadership of the Welsh Government and the Cancer Implementation Group, and the support of organisations such as Macmillan, to deliver tangible improvement for patients which can be measured in the results of the next survey.