A diagnosis of kidney disease can sometimes feel isolating but, rest assured, you need never face kidney disease alone.
You can create a personalised support network of friends, family members, healthcare professionals, organisations, charities and patient groups that you can go to for help, advice and information – whenever you need it.
Support from your healthcare team
Don’t hesitate to speak to your kidney doctor or nurse if you have any queries or concerns about any aspect of your kidney disease. They can:
- give you more information about your condition and explain your treatment options
- tell you about potential clinical trials and research projects
- refer you to a dietitian (for advice on how to eat well and exercise regularly)
- refer you to a counsellor (for emotional support and mental wellbeing)
- refer you to a social worker (for financial support and benefits advice)
Support from family and friends
Talking to your loved ones can help you get used to your kidney disease and reduce worries on both sides.
You may find that involving them in your kidney disease self-management can help too, for example:
- asking them to come along to your doctor’s appointments or dialysis sessions
- exercising together
- creating weekly meal plans together
This can save you from having to explain things to them and it can help them to understand your condition better.
Support from healthcare organisations
You can get medical information, help and advice on all aspects of kidney disease from reputable UK sites.
- Think Kidneys - a national awareness programme led by NHS England in partnership with the UK Renal Registry
- Rare Renal - which has information about rare kidney diseases, patient support groups and how to join the National Registry of Rare Kidney Diseases (RaDaR) (which aims to speed up research by gaining a better understanding of how these illnesses affect people)
- Patient View - a site where you may be able to access your medical history, latest test results, letters and medicines, plus information about diagnosis and treatment
- Health Talk - where you can hear patients and doctors talk about kidney disease
- Lab Tests Online - where you can find patient-centred information about tests, diseases and conditions
Support from UK kidney charities
Kidney charities, including Kidney Research UK, can provide you with information on conditions, treatments and medications, and offer access to research projects, counselling services, helplines and patient forums.
- The National Kidney Federation’sfree helpline: 0800 169 09 36
- The Polycystic Kidney Disease Charity’s confidential helpline: 0300 111 1234
- Kidney Care UK's counselling and support services
- Kidney Voices our closed Facebook group for patients interested in research
- Kidney Patient Guides online forum
- Patient Info various kidney forums.
Patient stories
"I was offered one-to-one counselling. She’d come and sit with me while I was on dialysis to avoid me having to spend even more time in hospital – because time is very precious to me. I’ve got my family to think of and I work full-time."
James Fenwick
"Who could have foretold that two years later I would be the first person from Salford to take a holiday abroad with a portable dialysis machine for company?"
John Roberts
Support from local kidney patients
You may also wish to join a local patient group or an online patient forum such as the Kidney Care UK patient support group on Facebook. Your kidney doctor or nurse should be able to give you a list of patient groups near you. Alternatively, contact The National Kidney Federation which is the national umbrella group for local kidney groups.
If you are on the look-out for online patient forums it’s best to focus on closed groups that filter out any unsolicited advertising, sales or marketing messages. And try to keep things in perspective. Some people may have had very bad experiences in terms or their kidney health and treatment. But everyone is unique so don’t think that these problems and experiences will automatically happen to you too.
- Remember to double check any hints and tips with your kidney specialist or your nurse specialist at your kidney unit to ensure that the advice also applies to you and will be of benefit to you.
Support from other charities
You may also find it helpful to contact other charities for support and information about related conditions and issues including:
And don’t hesitate to call Samaritans for free at any time, from any phone on 116 123 if you’re finding it hard to cope with your kidney disease and need to speak to someone urgently.