Thank you to everyone who completed our 2016 annual survey, we had 111 responses. Your opinions and experiences are invaluable to us: they enable us to shape the support we provide for you and inform us of areas of concern so that we can campaign for improvements.
This report highlights some of the major points that were raised by the results of the survey. If you would like to see the full results of the survey they can be viewed by clicking the image below.
- The route of diagnosis needs to be improved. We need to campaign for and support research into screening programmes.
Nearly half (43%) the people surveyed were diagnosed via an unrelated medical scan. These accidental discoveries of kidney cancer highlight the often hidden nature of kidney cancer and how much a screening programme could help.
19% of people were diagnosed via A&E, which may illustrate sudden and distressing onset of symptoms, where very often the kidney cancer is picked up at a very late stage. This result could also reflect on the stress that our general practice system is currently under due to a lack of funding and a low number of doctors.
Ideally, we would hope that a large number of people would be diagnosed via their GP, however, this occurred in only 38% of cases. We are currently working on ways that GP’s can improve diagnosis of kidney cancer. Kidney cancer often presents as a very vague collection of symptoms and quite often there are no symptoms at all which makes its identification at an early stage very difficult, if not impossible. A kidney cancer screening programme would be a much more effective way of spotting early stage cancers.
- Many people do not feel unwell prior to diagnosis.
70% of people said they did not feel unwell prior to diagnosis, of which 25% said they only felt unwell because of an unrelated illness. This is a huge proportion and probably why so many kidney cancer cases are difficult to spot and are often diagnosed too late. It is for this reason that a screening programme would make a huge difference.
- There are many vague and varied symptoms
Only 46% of people said they had blood in their urine and only 50% had a pain in their back/side/flank prior to diagnosis. These were the most commonly described symptoms, both of which could be caused by a variety of conditions and were only described by half of the people with kidney cancer. Kidney cancer is not an easy disease to spot.
- We need to improve the amount and quality of information given to patients. Many people want more information about disease stage and type and what this means.
31% of people don’t know what type of kidney cancer they have. Although we recognise that not everyone wants to know or they may be awaiting biopsy results, we feel this figure could be improved. When asked what type of information people would like to see more of, 41% of people said they would like more information on the type and stage of their cancer and what this meant for them. We will be working on providing this detail and questioning where the communication error is for these specific details.
- Not enough ‘take home’ information is being given to people in clinic
Nearly half (49%) of the people surveyed said that they were not given enough information about kidney cancer. In clinic the number of people who were given leaflets (46%), websites to view (8%) and phone numbers to call (26%) could certainly be increased. Often people need questions answering once they have returned home from clinic and had time to reflect. Providing people with details of charities that could help with information could be very useful to help answer questions that arise later. Only 70% of people were given a named clinical nurse specialist (CNS), the frontline person to contact during their care. A CNS should
be available to everyone.
- The information and support received both before and after surgery could be improved.
24% of people felt abandoned after surgery and wanted more contact with health professionals. 17% of people were not happy with the information and support received before and after surgery. Only 3% of people did NOT need or want any more support after having surgery. 53% of people said that emotional support after cancer was one of the most important issues to have an impact on people living with kidney cancer. The time after surgery and after being given the all-clear is a key time when we have noticed people need more support. We are looking to set up more Kidney Cancer UK support groups across the country and will continue to facilitate conversation and support via our careline (0800 002 9002), forum and Facebook support group.
This report only highlights a few of the issues raised by the survey. Please contact us via our ‘Contact Us’ page if you feel we have missed anything. Thank you very much to everyone who took the time to complete the survey. We always find the results very useful: they enable us to focus our support in areas that are important to you.