Comment

A new standard of care for patients with cancer

Macmillan Cancer Support has developed a framework for improving patient and staff experience
Patient_Feedback

Since 2010, the National Cancer Patient Experience Survey (NCPES) has cast light on the experiences of thousands of cancer patients in England. Similar surveys in Northern Ireland, Scotland and Wales have been undertaken too.

The results of the most recent English survey were published in June. They reveal causes for celebration and concern.

For example, 94% of patients rated their care highly, but 33% said healthcare professionals did not always ask them the names they would prefer to be called. Furthermore, 19% were given no written information about their types of cancer and only 33% reported being given care plans.

Baseline

The NCPES is a partial, but indispensable, indication of the quality of care people receive. Due to a change in this years surveys format, it is difficult to

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Since 2010, the National Cancer Patient Experience Survey (NCPES) has cast light on the experiences of thousands of cancer patients in England. Similar surveys in Northern Ireland, Scotland and Wales have been undertaken too. 

Patient_Feedback
By communicating sensitively, staff can ensure patients’ dignity and respect are protected. Picture: Tim George

The results of the most recent English survey were published in June. They reveal causes for celebration and concern.

For example, 94% of patients rated their care highly, but 33% said healthcare professionals did not always ask them the names they would prefer to be called. Furthermore, 19% were given no written information about their types of cancer and only 33% reported being given care plans.

Baseline

The NCPES is a partial, but indispensable, indication of the quality of care people receive. Due to a change in this year’s survey’s format, it is difficult to compare its results to those in previous years, but it provides a better baseline for the future. It will prove to be a crucial tool in identifying recurring problems cancer patients experience during treatment and pinpointing areas that require improvement.  

Data about patient experience of end-of-life care are less developed, however. The sole indicator of experiences of patients who are dying is the National Survey of Bereaved People (VOICES) run by the Office for National Statistics.

While VOICES provides invaluable insight into the kind of support a dying person receives and where he or she died, it is a retrospective survey and does not document the real-time experiences of patients at the end of their lives. 

Culture change

If statistics help paint the broad picture of cancer patient experience, there is also value in the power of patient stories for driving culture change. In recent reports, the Parliamentary and Health Service Ombudsman has highlighted individual cases of appalling end-of-life care, including cases in which people dying of cancer were left without adequate pain relief. 

These powerful, emotive examples can help change the culture of the NHS, particularly if they are selected because they represent wider problems observed through the collection of other data on patient experience.

Values-based standard

How, then, can these data drive culture change? At Macmillan Cancer Support we recognise that patient experience is inextricably linked to staff experience. Valued, happy staff will always deliver better patient experience, and that means changing culture and behaviour where necessary.

We have developed a values-based standard based on human rights principles as a framework for improving patient and staff experience. 

The framework helps us to identify what staff can do on a day-to-day basis to ensure people’s rights to, for example, dignity and respect, are protected. These include communicating sensitively, understanding that people are more than just their condition, and ensuring that people have control over their environment and personal space.

Communication

For example, the NHS Lanarkshire haematology team uses text messaging and emails to better communicate with patients, while patient surveys at Royal Wolverhampton NHS Trust have resulted in the trust introducing more varied food for head and neck cancer patients. 

Rather than a ‘top-down’ approach to ensuring good patient experience, the values-based standard is led by staff, patients and carers, and we encourage all people responsible for patient experience to consider adopting it.

The Macmillan Values Based Standard can be viewed here

 

About the author

Adrienne Betteley is interim head of health and social care at Macmillan Cancer Support
 

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