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Kidney Cancer Patient Survey 2015

New patient survey, by the James Whale Fund for Kidney Cancer, highlights the urgent need for improved and earlier kidney cancer diagnosis.

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A recent survey undertaken by the James Whale Fund for Kidney Cancer has highlighted the urgent need for improved and earlier diagnosis of kidney cancer: an overwhelming majority of patients – seventy percent – found out they have the cancer whilst having scans for unrelated conditions.  Significantly, an early diagnosis is often the key to a successful outcome for people.

The Kidney Cancer Patient Survey 2015, which involved participants from across the UK, also highlighted the need for improved information at the time of diagnosis – a time when people are most vulnerable – as more than half the respondents were not satisfied with the information, verbal and written, that they were given:

 

  • Over half the patients surveyed wanted more information, even though they understood everything when diagnosed.
  • Just under half (forty-four percent) said they did not receive enough information about kidney cancer and the stage their illness was at.
  • Lack of information about financial help and benefit entitlement was identified by forty percent of respondents.
  • Eighteen percent said they did not understand everything and were confused.

 

Lack of information was also pertinent at the time of surgery and recovery, with twenty percent of people not content with the information supplied to them.  A lack of information on drug treatments and how to manage side-effects was highlighted by five per cent of respondents.

Conclusion

The survey’s key findings detail that the communication people with kidney cancer receive, falls far short of exacting standards expected. People deserve to be sensitively told when they have kidney cancer, receive information that will help them cope with such life-changing news and understand what their kidney cancer journey will involve at all points.

Strong campaigners of earlier diagnosis, the James Whale Fund is adding free doctor training in 2016 to their training portfolio. The aim of this course is to raise awareness and knowledge of kidney cancer, with the aim of improving early diagnosis rates.  The course, aimed at newly-qualified registrars and GP’s, can contribute to their continued professional development (CPD) points.

The Fund also calls for the government to:

  • Improve funding into research of a simple early diagnosis test of kidney cancer.
  • Explore the viability of automatic screening for kidney cancer from 45 years of age.
  • Give patients access to more life-saving and life-extending drugs across the UK; currently there is only one.
  • Promote awareness that kidney cancer is a silent killer and to look for the ten signs of kidney cancer:
  1. blood in the urine
  2. persistent low back pain
  3. pain in the side, between the ribs and hipbone
  4. a lump or mass in the area of the kidneys
  5. persistent high temperature
  6. night sweats
  7. high blood pressure (hypertension)
  8. tiredness
  9. weight loss
  10. loss of appetite

Nick Turkentine, CEO of James Whale Fund for Kidney Cancer said; “The findings of our survey show an urgent need for greater awareness of the symptoms of kidney cancer. For the government, this needs to be a priority for the general public and medical practitioners. For too long kidney cancer – despite being the eighth most common cancer in the UK – has been a low priority and generally the first people hear of the disease is when they, or a loved one, are diagnosed. Cases are on the increase, 10,000 every year with just under a fifty percent survival rate”.

He concluded; “When a diagnosis is given, in addition to it being communicated in a caring and compassionate way, it needs to be accompanied with material to help the patient understand what they are being told and which contacts can support them on their journey.”

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