Kidney Care in the London Kidney Network

Information about Kidney Disease

How you can get involved in the London Kidney Network

Information about Kidney Disease

What is Chronic Kidney Disease (CKD)?

Chronic Kidney Disease (CKD) is when the kidneys do not work as well as they should. The word “chronic” means that the disease develops over a long time and will usually get worse as you get older. People may not feel symptoms with kidney disease until it is very severe. This is why it is important to know if you are at risk of CKD, and if so, to have a test at least once a year to check both your blood and urine for signs. 

Am I at risk of CKD?

The top causes of kidney disease are diabetes and high blood pressure. We cannot cure CKD, but there are medications and lifestyle changes that can help to slow down the disease for many people. For example, keeping blood sugars under control (if you have diabetes), and having good blood pressure is especially important – it helps to protect the kidneys, but also to reduce the risk of developing heart and blood vessel disease (which we call cardiovascular disease). 

It is important to stop smoking, as being a non-smoker is shown to lower the risk of CKD and heart disease. The other thing that reduces risk is eating a healthy diet and exercising regularly. 

What are the risk factors of CKD?

Age: The risk of developing kidney disease and also requiring Renal Replacement Therapy (RRT) increases with age, with a peak in the 75-84 year age band with a median age of 64 years. 

The burden of RRT service provision (in terms of numbers) falls mostly within the 45-74 year age band. The median age for the prevalent RRT population is 60 years.

Ethnicity: Crude incidence rates for RRT are higher amongst Black and Asian ethnic groups. Evidence for ethnic differences in CKD progression and outcomes is mixed. Evidence for poorer access to healthcare services in general for BME groups is reported.

Socio-economic status: Crude incidence rates for RRT are higher amongst patients who live in areas categorised as more deprived. Evidence from research demonstrates that those who are social deprived are more likely to develop CKD than their less disadvantaged counterparts.

Clinical risk factors: High blood pressure is both a leading cause of and complication of CKD. It increases the chance that kidney disease will get worse.

Diabetes is the leading cause of kidney failure, An estimated 40 per cent of people with both type 1 and type 2 diabetes will develop CKD during their lifetime.

Early-stage CKD is clearly a risk for developing more advanced disease as well as being a risk factor for AKI. Albuminuria is a risk factor for faster progression of CKD as well as renal failure and CVD.

Frailty is prevalent in patients with CKD and it is associated with an increased risk of adverse health outcomes.

Mental health disorders or more common among people living with kidney disease  which has consequences for their ability to adhere to treatment plans.

Heart failure is a significant risk factor for kidney disease.

My GP has told me I have kidney disease.

If a GP sees that someone is at risk of CKD, they will check their blood (for signs of reduced kidney function) and urine (for signs of protein, which indicates kidney damage).  People living with CKD can be managed by their GP alongside advice and support from the kidney specialists at hospital trusts. 

A GP may recommend certain medications to protect the kidneys and heart. As mentioned above, they will offer advice to stop smoking, eat healthily and exercise. 

Some people will need to see a kidney specialist to help manage their CKD. A GP can refer people to a hospital that provides specialist kidney care if needed.

I'm seeing a specialist Dr at the hospital for my kidney disease.

Your specialist nurse or doctor will be able to provide you with more information that relates to you and your health condition.  It is important that you attend the hospital appointments so that the team can help you to manage your kidney problems.  In some people with CKD, your team may talk to you about transplantation or dialysis, which are treatments for kidney failure.

Where can I learn more?

You can learn more about kidney disease and its management from our charity colleagues:

Additional useful links:

About Kidney Disease:

Managing Kidney Disease:

Healthy Lifestyle Information:

      I'd like to meet other people who have kidney diease.

      KPAs, or Kidney Patient Associations, support people with kidney disease and their loved ones at local kidney units.  They are run by the National Kidney Federations. 

      You can find out your local KPAs through their websites, or through the NKF website https://www.kidney.org.uk/kidney-patient-associations

      The KPAs in the London Network Group and their websites are:

      Patient Involvement in the London Kidney Network

      Why is the London Kidney Network involving patients?

      The LKN is committed to involving patients and public to influence the work we do.  We know that patient involvement and engagement leads to better health outcomes, and input on what is needed to improve healthcare from a service user perspective is vital. 

      Why is patient involvement needed?

      We need patient and carer’s voices and experiences to work with us to plan, deliver and evaluate kidney care services across London and Surrey Heartlands. We also need people who have experience of kidney disease to work with us to develop research and quality improvement initiative, service commissioning and health policy all of which help us in the aim to “Getting it Right First Time” [GIRFT]. 

      Patients can also help to develop, adapt and support the national quality standards for the involvement of service users and carers. 

      What can I do?

      There are a number of different ways to get involved with the work the LKN is doing which may include volunteering for a focus group on a particular topic relevant to you, completing a survey, providing a testimonial, taking part in an interview, attending a co-design meeting, being a member of a steering group or getting involved in a specific task and finish project.  

      How do I get involved?

      We are keen to hear from patients and carers who would like to get involved whether you consider yourself a lay patient or an advocacy expert. However big or small your input, it will be valuable and it will help shape the work we do. 

      Please email us at lkn.londonkidneynetwork@nhs.net and tell us a little about yourself, your interests and the experience you can bring.

      If you’d like to find out more about being involved in kidney work outside the LKN, contact our colleagues at the Kidney Patient Involvement Network  https://kpin.org.uk/

      What support will I get?

      If you are new to this type of role, support and guidance will be provided by the LKN Patient Involvement Lead. 

      Patient involvement in the LKN is a voluntary role, however, there may be future opportunities to receive payment for specific project commitments. Any travel expenses can be reimbursed.

      We will be happy to provide formal written recognition and acknowledgement of your contribution as a volunteer so that you have a record available for your personal use where this may be helpful to you.

      If you have any other questions about volunteering please do contact us to discuss via email us at  lkn.londonkidneynetwork@nhs.net