Today, Monday 8 December, we’ve published our latest report which highlights that systemic changes are needed to ensure thousands of people do not find out they have chronic kidney disease (CKD) via the NHS App, without the support and context needed to come to terms with the diagnosis.
Despite NHS guidelines stating that ‘patients shouldn’t be receiving serious diagnoses through digital channels without adequate support or context’, our report provides evidence that far too many people are receiving their diagnosis in this way. Overall, almost 40% did not have the opportunity to discuss their diagnosis with a healthcare professional.
The communication gap in kidney disease diagnosis is further deepened by a common and concerning delay between doctors diagnosing CKD and patients then being informed. This is something we hear all too frequently on our Support Line, and is reinforced by our research which shows that only one third of our survey respondents (36%) found out they had CKD at the same time that it was diagnosed. For 20% of respondents there was a gap of one year between the diagnosis being recorded on their records and when they were told they have CKD. Shockingly, most of these people (84%) were in the later stages of CKD.
Fiona Loud, Policy Director at Kidney Care UK, said:
Our research found that in many cases there is a considerable delay between the diagnosis being recorded and the individual being told they have CKD. As well as missing out on opportunities for medication to help slow the decline in their kidney function, this robs people of time when they could be making lifestyle and dietary changes that could help prolong their kidney health. This report makes an urgent and compelling case that more needs to be done to make sure people receive a timely diagnosis, delivered sensitively and accompanied by useful information and support.
Kidney disease diagnosis must improve
The report makes recommendations to improve how people are diagnosed with CKD.
In order to improve how people are diagnosed with CKD we must ensure that:
- People most at risk of developing CKD – people with diabetes and/or high blood pressure – are told about their risk and are screened for CKD regularly. This currently does not happen consistently, despite being included in NICE guidance.
- People who are diagnosed with CKD are told about their diagnosis in a timely and appropriate way, ideally face to face, with the opportunity to ask questions about what their diagnosis means for them.
- People with CKD must not find out about their diagnosis via the NHS App without a discussion with a healthcare professional about what that means to them.
- People with CKD are provided with trusted information so that they can take control of their kidney health no matter what stage of CKD they are at. This includes links to trusted sources within the NHS App and on the NHS website.
- Governments must ensure that the pace of growth and development of AI in healthcare does not result in people accessing unsafe, inappropriate or misleading health information.
More than two thirds (68%) of respondents used the internet and social media to find the information they needed to help understand what their diagnosis meant. This highlights that people are looking for information especially where they don’t have the chance to talk it through with a health professional.
Sophie Randall, Director of the Patient Information Forum (PIF), adds:
PIF endorses the recommendations of this report. Our data show eight in ten people want information to manage their health and eight in ten people who use health charities feel better able to manage long term conditions. By 2029, the NHS plan promises a service that will be digital by default. To do this it needs to start meeting the needs of the public with its digital services. Only by providing information and support can we move the NHS from a sickness model to a prevention service.
It is vital that the information they find is accurate, and that programmes like Diagnosis Connect have a key role to play in ensuring people are directed to charities providing trusted and accredited information.
Kidney disease has not been identified as one of the first conditions to be included in this programme, something Kidney Care UK would like to see changed on behalf of those we support.
After launching our Bloody Amazing Kidneys campaign we have heard from even more people who have had poor diagnosis experiences. This must change. As the NHS implements their 10-year plan for England the shift to prevention brings new opportunities for improving rates of CKD identification and management. Moving from analogue to digital has huge potential for improvement, but as the findings of this report clearly demonstrate, it must have patient experience front and centre to avoid causing unintended harm or distress.Fiona Loud, Policy Director at Kidney Care UK
We’d like to thank the 1,311 people who responded to our online survey in October, the results of which informed this report.
As well as survey responses we received more than 800 additional comments, many sharing upsetting, traumatic and difficult experiences.
We’re grateful to everyone who took the time to share their experiences with us.