Patient education on advanced kidney care
There are a number of excellent kidney charities that provide easily understandable and up to date information about living with kidney disease and its management. Many of them are able to post you hard copies of information leaflets and can be contacted by telephone.
Information about kidney disease
The internet is not regulated and we recommend that you only visit the sites listed here. We recommend only relying on sites that are owned by an NHS organisation, nationally recognised society or ending in .org. If you have found other sites not listed, we recommend that you check them with your kidney care team as to their accuracy.
For information please click on the links below of reliable Kidney sites:
West London Kidney Patients’ Association is a charity run by kidney patients, their families, friends and carers with support from staff of the Imperial Renal and Transplant Centre. All patients within the West London units are automatically entitled to become members of the association
Kidney Charities These charities provide support and information covering all aspects of kidney disease. They are a reliable and up to date source of information. Polycystic Kidney Disease Charity NICE guidance Chronic Kidney Disease (CKD) These are some of the hospitals in the UK that have well developed websites containing a variety of patient information. Barts Health NHS Trust
There are currently three professional organisations/associations which help bring kidney care teams together nationally. These groups collect data, develop guidelines and provide a platform for the sharing of experience and research. There is an annual conference run called UK Kidney Week (UKKW) where work and research are shared among kidney care professionals. It is also possible as a patient to attend and present information at UKKW.
Association of Nephrology Nurses UK (ANN UK) The Advanced Kidney Care and Transplant teams run a series of seminars to help people with kidney disease to understand their treatment options. The seminars are currently run online, and patients will be sent a link to attend via email. There is also a leaflet entitled Treatment Options for Advanced Kidney Disease (available at the link below) which outlines the various treatments available.
Leaflet – published on Intranet ‘Treatment Options for Advanced Kidney Disease’ – ref 2389 review date December 2022
Baxter information page with videos on treatment choices Information about Kidney transplantation Information about home dialysis treatment options Information about Haemodialysis Information about access for starting haemodialysis and having a fistula or line inserted If you choose to have haemodialysis, whether at home or in hospital, you will require what is known as vascular access. This is a way of getting a small amount of your blood to pass around a haemodialysis machine. This can take the form of an arteriovenous fistula (Fistula or AVF) or a temporary line which can sometimes become more permanent. You can find information at our vascular access page or at Kidney Care UK. Patients starting haemodialysis can find more information on our haemodialysis page In some circumstances transplantation or dialysis may not be the best option or choice for you. You will be helped and supported by the advanced kidney care nurse specialist and your kidney consultant in coming to that decision. There is also the support of the Kidney Care Counselling team. When the time comes there are palliative care services to support you within the Trust and your local community. These teams will liaise to help you form what is known as an Advanced Care plan. This plan is sometimes completed via an electronic system called [Coordinate my Care [https://www.coordinatemycare.co.uk/], which shares your plan between your hospital team, General Practitioner and local Ambulance service.
Choosing not to have dialysis – Kidney care UK Your local consultant and nurse specialist will support you. Speaking to your family and friends can often help too. We also recommend speaking to other patients who can be contacted via the West London Kidney Patients’ Association. Sometimes, you may need the additional support of the Imperial team of counsellors and a social support worker, who will be able to support and advise you. Find out more about our kidney counselling service Kidney research UK decision making tool
Decision making tool – dialysis options (devised in the USA by patients)
Symptoms vary from person to person and can change according to your stage of kidney disease. The main symptoms are itching, nausea, lack of appetite, lethargy and tiredness and shortness of breath. Some people experience some, all or none of these symptoms. It is important that you discuss your symptoms with your advanced kidney care nurse specialist at your appointments, who will be able to give advice on managing your symptoms. Sometimes altering your medication or prescribing new medications can help as well as advice about lifestyle and diet. You can also find further information at the sites below:
10 Signs You May Have Kidney Disease It is important that your blood pressure is controlled. We encourage patients to take their blood pressure themselves at home. Home blood pressure readings tend to be more accurate as you are likely to be less stressed. Your blood pressure will be discussed at your appointment and it is important that you have your readings ready. Well controlled blood pressure can in some cases lead to slower progression of your kidney disease and reduce the risk of heart attack or stroke. Ask your kidney care team what blood pressure is ideal for you. You can find further information, including purchasing a correctly sized accurate blood pressure sphygmomanometer at the links below: Medicines for high blood pressure (PDF, 568KB) You may feel that you have become frail or have had an assessment that tells us how frailty has affected you. Information on frailty and kidney disease is available at the link below. Many patients find that as they become older they have more health problems and slow down so taking on a demanding treatment like dialysis, will not make their lives longer or better. Find out more about frailty and kidney disease The Imperial kidney care team has a supportive team of counsellors and a social support worker who will be able to support and advise you Find out about support from counsellors and social support worker Should I change my diet if I have kidney disease? The advanced kidney care nurse specialist team work closely with the dietician team to help you understand your particular dietary needs. The dietician teams are available at some education seminars and also provide a service across our clinics. You can find more information about diet at the link below. Visit our Kidney dietician page for more information
Where can I get information about Kidney research? Imperial college healthcare NHS Trust is world renowned for its research and has a very active team of Kidney Research nurses who work closely with medical colleagues in conducting research to understand and advance kidney care. Their pages can be found at Link to the kidney research team pages. In addition there is a national group called Kidney research UK who fund and champion renal research.
National Institute for Health ad Care Excellence (NICE)
Other useful NHS hospital kidney websites
Edinburgh renal unit
Guys and Kings ‘My Kidney’ Useful kidney patient videos
Professional Kidney Associations – national
Information about treatment options for kidney disease
Choosing not to have a transplant or dialysis
Help and support with my decision-making at this time
Further support resources:
Information about kidney disease symptoms
Information about taking my blood pressure
Emotional support for coping with dialysis
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