Tackle, Prostate Cancer UK, Macmillan Cancer Support, patient representatives, urologists, oncologists, clinical nurse specialists, cancer commissioners, and Ipsen Limited[†] came together through a joint working initiative, to develop a quality standard that best represents the quality of care for patients with prostate cancer with a particular focus on the quality and service requirements from the perspective of a prostate cancer patient.
A summary of the nine statements and what they mean to patients can be found here
To download the complete quality standard please click here
According to a report by Prostate Cancer UK (2013), there are, unfortunately, significant variations in prostate cancer incidence, patient experience, mortality and survival across the UK[1]. This quality standard aims to ensure all men with prostate cancer have a right to have the best possible care and support regardless of where they live.
Tackle welcomed the opportunity to chair the group of patient-led organisations. Roger Wotton incoming Chair of Tackle says, “having the voice of prostate cancer patients uppermost in our minds is the most valuable contribution we can make to ensuring services meet the needs of patients. Working alongside similar-minded organisations on this initiative enabled us to evaluate the shortcomings in prostate cancer care across the country and build a consensus around a clear set of quality improvements.”
“Prostate Cancer UK has long been highlighting the patchy levels of care for men with prostate cancer across the country. This quality standard puts the patient first and has been developed by many groups who truly reflect the experiences of men with this disease. We urge NICE to adopt our joint recommendations and set a benchmark for care, which puts the patient first and will ensure men with prostate cancer get the best support possible wherever they live,” said Karen Stalbow, Prostate Cancer UK’s Head of Policy and Campaigns.
Through this quality standard the group wish to give patients and their partner/carer a more powerful voice and active involvement in setting priorities for service improvement and in improving access to cutting edge diagnostics, full choice of innovative treatments and clinical trials.
Keith Cass MBE, Founder of the Red Sock Campaign believes that no decisions should be made which affect prostate cancer patients, without those patients being involved. This shared decision-making forms the crux of the NHS policy[2], which states: “no decision about me without me”. “With over 4,000 prostate cancer patients and carers contacting me through the Red Sock Campaign it is important that I have first-hand examples of how patients could affect the creation of quality standards,” he says.
“Work on quality standards for prostate cancer has been a very worthwhile exercise,” highlights Dr Frank Chinegwundoh MBE, Consultant Urological Surgeon and Chair of Cancer Black Care. “This particularly resonates with black men who are two to three times more likely to develop prostate cancer than other groups. The voice of patients needs to be heard at high levels by those who shape national policy.”
Over the last six months, the working group members have identified nine quality statements that best represent the quality of care for patients with prostate cancer. As part of the development process these quality statements were also tested and validated amongst a wider group of stakeholders to ensure it resonated with a wider audience.
Moving forward, it is our expectation that commissioners, healthcare professionals, social services, patients, partners, and their carers consider this quality standard for local implementation to improve local services for men at risk of and living with prostate cancer.
NOTE: The National Institute for Health and Care Excellence (NICE) is expected to publish a quality standard for prostate cancer in June 2015 and are keen to ensure the quality statements within their quality standard are important to patients, service users and carers, and are feasible to implement. As part of the NICE consultation process these quality statements have been submitted to NICE for consideration within their quality standard for prostate cancer.
Tackle Prostate Cancer – the campaign name for the Prostate Cancer Support Federation. Reg Charity No 1123373
References:
[†] This is a Joint Working initiative between The Quality Standard Working Group for Prostate Cancer and Ipsen Limited
[1] Quality care. Everywhere? An audit of prostate cancer services in the UK. Available at: http://prostatecanceruk.org/media/1818657/1772-day-of-action-report_for-web.pdf (Last accessed: February 2015)[2] Liberating the NHS: No decision about me, without me”. Available at: https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/216980/Liberatingthe-NHS-No-decision-about-me-without-me-Government-response.pdf (Last accessed: February 2015)
