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National Cancer Patient Experience Survey (NCPES)

Last Friday (27th July), the findings of the National Cancer Patient Experience Survey 2017 (NCPES) were published.

Last Friday (27th July), the findings of the National Cancer Patient Experience Survey 2017 (NCPES) were published. Our Policy and Public Affairs Assistant, Helena Brown, has written a blog to explain the results.

The survey offers insights into the experiences of cancer patients across England. The survey monitors changes in patient experience both overall and across tumour types. It also enables cancer patients to feed into decisions made about their treatment and care within the NHS. The survey results only apply to the patient experience of people with high grade brain tumours.

Survey results

The results of the NCPES 2017 are more positive than in previous years for patients affected by a brain / CNS tumour, indicating moderate improvements in treatment and care across some areas including access to a Clinical Nurse Specialist (CNS), being able to contact a CNS and receiving understandable answers from them. There has been an increase in patients receiving a care plan but still only around 35% of all cancer patients are receiving one. Despite these improvements, it remains the case that people with a brain tumour are still reporting that they are receiving poorer care overall in comparison with people with other types of cancer.

Access to a Clinical Nurse Specialist

Almost 96% of patients with a brain tumour were given the name of a Clinical Nurse Specialist (CNS) to support them throughout their treatment. We know how important having access to a CNS is when receiving treatment and care for a brain tumour. Whilst it is positive that access to a CNS is rising, we understand that it is not always easy for patients to get the right support from their CNS. More needs to be done to guarantee that this changes. We are aware that people with brain tumours are more likely to have a CNS and that far fewer people with low grade tumours are receiving this essential support. This is why we are currently funding a low grade glioma CNS post at King’s College Hospital and are pushing for everyone with a brain tumour to be given the name of a CNS who will then support them throughout treatment.

Financial help

It is encouraging that hospital staff are providing more information relating to financial help and benefits for patients with a brain tumour. Around 74% of respondents with a brain tumour said that they had been given information of this kind. This is a significant increase from last year and it indicates an acknowledgement of the challenges faced by our community in relation to welfare and benefits. Whilst we are pleased that hospital staff are taking this issue seriously, we know that navigating the benefits system remains challenging. Our The Price You Pay report, which was published in March, revealed the financial impact of a brain tumour and we will carry on campaigning on behalf of our community to make sure that those affected get the right support.

The Price You Pay: the Financial Impact of a Brain Tumour, was created with the help of 300 people, including those personally affected, and we are so grateful for your input.

Your stories and experiences will help us drive change so that, one day, the cost of a brain tumour won’t be so high.

Read the report

It is important to note that the NCPES, whilst providing important information about the experiences of people with a high grade brain tumour, does not offer our entire community the opportunity to share experiences of their treatment and care. The survey remains only for over 16s and we also recognise that people with a low grade tumour are unable to inform their treatment and care through a survey of this nature.

We know that overall our community feel that their treatment and care must improve. The survey indicates that the NHS needs to do far more to support people facing this devastating disease. We will do all we can to fight for better treatment and care for our entire community recognising that whilst there have been some improvements, there is so much more that needs to be done. We will continue to hold the NHS to account and urge policymakers to support us in our pursuit of the best treatment and care for everyone affected by a brain tumour.

Join our united voice

We campaign to improve life today for all those affected by a brain tumour, but we’re only able to do this alongside our incredible supporters taking action to help bring about real, lasting change.

That’s why we need people like you to join us.

Campaigning activities range from sharing our campaign messages on social media to meeting with your local MP, so whether you can give a little time or a lot, we’d love to have you on board.