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