A report by male cancer charity Orchid is calling for improvements in prostate cancer care

SIGNIFICANT AREAS OF unmet need within prostate cancer care in England are outlined in a new report from Orchid, the UK charity dedicated to male-specific cancers. “This report is very timely to inform policy change,” says former health and cancer minister, Paul Burstow. “We’re becoming older as a society, which leads to more people living healthy lives with co-morbidities.” Better integration of care is needed, he believes.

The report ‘Identifying and tackling the unmet need in prostate cancer care’ highlights the significant shortfalls in the quality of information and support offered to prostate cancer patients, who report a worse provision of NHS care than other cancer sufferers.

“Prostate cancer has a long way to go,” says Rebecca Porta, ceo of Orchid. “Breast cancer has had high awareness for the past 30 years and there’s been lots of quite shocking campaigns, but we need to talk more openly about all cancers.”

“Compared to many other cancers, prostate cancer is a particular success story,” says Paul Burstow. “However this success should not breed complacency. Men and families continue to face an uphill struggle throughout their cancer journey. This report shines a light on the worrying areas of unmet need and specifically quantifies the level of improvement needed.

“Why should men with prostate cancer have to cope with second-rate services, a lack of vital support and limited access to world class drug treatments and clinical trials?”

Orchid is urging the NHS, policy makers and politicians to take action to end inequalities among prostate cancer patients. “We want to use this report to influence change at a policy level,” says Rebecca Porta, ”to improve patient care and ensure that all men living with prostate cancer have everything they need to tackle the disease head on."

Scope of the problem

Prostate cancer is the commonest male cancer in the UK, with over 41,000 new cases diagnosed each year. In 2012 just over 10,800 men died from prostate cancer, which is estimated to become the commonest form of cancer globally by 2030. Despite prostate cancer death rates steadily declining over the past two decades thanks to better treatments, earlier diagnosis and improvements in NHS services, the significant variation in the quality of care men receive remains a concern.

Call to action

The report makes 15 recommendations focused on driving change and improving care quality for prostate cancer patients. Key proposals include:

Government:

• Ensure that all patients have access to a uro-oncology clinical nurse specialist (CNS) at all stages of their cancer journey

• Review individual caseloads of CNS

• Ensure there are sufficient numbers of CNS to cope with newly diagnosed cases and metastatic patients.

NHS England:

•Ensure that NICE guidance and guidelines are implemented within three months, particularly in regards to drug treatments

• Understand and act upon variations in treatment

• Appropriately direct patients to a range of specialist support services including charities, helplines and support groups.

The Department of Health:

• Review its ‘integration pioneers’ to determine whether improvements can be made in driving the delivery of prostate cancer care. This will help to ensure that care is integrated and provides a coordinated service across GP, hospital and social services

• Encourage patient participation in high quality clinical trials.

The Care Quality Commission:

• Examine access to NICEapproved medicines in the NHS-funded services it inspects

• Ensure compliance with national cancer peer review processes in its inspection of healthcare providers.

From patients’ perspective, the report aims to ensure they receive the support and information they require, are made aware of the treatments that are available to them and are appropriately directed to research and clinical trials that they may be eligible for.

Why should men with prostate cancer have to cope with second-rate services?

 

The future of treatment

Orchid hopes that the report’s recommendations will drive policy change and help ensure that all patients have access to the best possible resources and treatments. “Patients need to know where to go for information and the offered information needs to be right for them,” says Rebecca Porta. “It’s imperative that we manage the disease and improve quality of life.”

Of particular concern is the limited patient access to clinical nurse specialists, with Orchid reporting that currently one CNS is shared between 120 to 150 patients. According to the charity, CNS are critically important in explaining the different treatment options to patients and providing support throughout the diagnosis.

“CNS are not to be underestimated,” says Rebecca Porta. “We would like every patient diagnosed with prostate cancer to have a named CNS nurse who they can see regularly,” she adds.

Another key feature of the report is encouraging patient participation in high quality clinical trials, which Professor John Kelly, consultant urological surgeon, describes as “a metric for quality of care and a metric for change.”

Currently over 80 per cent of prostate cancer patients report having seen information about cancer research displayed in hospitals, yet only around 30 per cent of patients have discussed taking part in cancer research with a healthcare professional.

“Without clinical trials and research studies, many of the ways in which prostate cancer is diagnosed and treated today would not now be available,” says a spokesperson for Orchid. “Without the patients who participate in these trials at this present time, treatment could not be improved for others in the future.”