Charity warns “short sighted” NICE risks compromising care of men with prostate cancer

Men with prostate cancer are at risk of being left behind those with other common cancers thanks to a spate of recent moves by the National Institute for Health and Clinical Excellence (NICE), The Prostate Cancer Charity has warned.

Speaking today (Wednesday 14 March 2012), at a special drop-in event at the Houses of Parliament, The Prostate Cancer Charity's Chief Executive Owen Sharp, claimed that "short sighted" NICE decision makers were compromising the needs of men with prostate cancer as the Charity unveils its own vision for the care of men with the disease across the country.

Referring to a two year delay to the development of a quality standard for prostate cancer by NICE, in his opening speech at the 'Quality Care. Everywhere' campaign event, Sharp said:

"Men with prostate cancer are no strangers to having to fight to gain access to the treatment and care they need. Delays in the development of national standards of care mean that many men continue not to be fully supported when they need it most. In the past, similar delays have led to men reporting a worse experience of care than people with other common cancers. We do not want to repeat these mistakes.

"NICE is incredibly short sighted when it comes to men with prostate cancer. Along with other decisions, such as refusing to recommend vital treatments for men dying of the disease, they are in danger of jeopardising what little progress has been made for men."

A recent survey by the Charity, as well as evidence from the latest National Cancer Patient Experience Survey, shows that a significant number of men with prostate cancer are still not getting the support and information they need and wide regional variation in the standard of care men in England can expect still persists1,2. Unfortunately, NICE's decision to delay the development of quality standards for prostate cancer until 2013 means this variation is at risk of increasing.

In the absence of formal standards, the Charity has now taken matters in to its own hands. After a wide-ranging consultation with people affected by prostate cancer, it has compiled a draft set of standards that set out what good quality care looks like. Alongside with campaigners in Westminster today, they are calling for MPs and policy makers to support these standards and help push through their speedy development.

Sharp continued:

"Choosing which treatment to have can be a minefield for men with prostate cancer and many are simply not getting the level of support and information they need to navigate this. We cannot afford to wait for NICE to stop dragging its heels. We are proud to have developed our own set of standards, with men at their heart, and urge MPs to pledge their support for them. A Quality Standard for breast cancer - the most common cancer in women - was published almost two years ago, yet men with prostate cancer are forced to wait. We must move swiftly to change this inequity."

The Charity is calling on MPs to show their support for the campaign by publicising the draft standards to their constituents so that as many people affected by the disease as possible can feed in their views.

John Baron MP, Chair of the All Party Parliamentary Group on Cancer, has thrown his backing to the initiative. He said: "I very much support the work The Prostate Cancer Charity is doing to identify standards of quality prostate cancer care. It is unacceptable that the quality of prostate cancer services varies across the country. The charity's work will help to redress some of these inequalities and I hope my colleagues will join me in supporting this work."

(1)   Between October 2011 and January 2012 The Prostate Cancer Charity surveyed over 700 people in the UK. The Survey was carried out online and through paper questionnaires and showed that men have different experiences of care across the country. For example, although many men were satisfied with the information they received when they were diagnosed, 1 in 4 said the information they received was 'too little'.  The survey found that these differences occurred at each stage of the prostate cancer journey.

(2) National Cancer Patient Experience Survey 2010. Report available online.

 

1. The Prostate Cancer Charity's development of standards of quality prostate cancer care

 

Why do we need a national set of standards of quality care?

We believe that men with prostate cancer should have the same high quality care, regardless of where they live. We need national standards of quality prostate cancer care to ensure that healthcare providers and NHS staff know exactly what services and standard of care they should be providing. We also need them to ensure that men who have, or are concerned about, prostate cancer know exactly what level of care and support they are entitled to.

 

How do we know that the quality of care currently varies across the country?

The Prostate Cancer Charity surveyed over 600 men affected by prostate cancer and their families and found that variations exist in the care that men receive across the UK. These variations appear at every stage of the patient journey - from diagnosis through treatment, to  living with side effects and beyond.

What is The Prostate Cancer Charity doing to address these issues?

We are developing national standards of quality prostate cancer care in partnership with men, their partners, families and friends and other experts, such as healthcare professionals.

We want our standards to cover every stage of the prostate cancer journey, and to include support for family members and carers too.

What we've done so far to inform these standards:

  • Surveyed over 700 UK people affected by prostate cancer
  • Held round table discussions to gather the views of health care professionals and people affected by prostate cancer across the UK
  • Interviewed healthcare professionals to get their views on quality care
  • Held focus groups to allow men with prostate cancer to feed their thoughts into the development of the standards

We have used the information secured through these methods to develop a draft set of standards. We would like people with experience of prostate cancer to help us finalise these.

To view and feed back on The Prostate Cancer Charity's draft standards of quality prostate cancer care visit: www.prostate-cancer.org.uk/takeaction

Alternatively, to receive a hard copy by post, please call 0208 222 7622