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Support

Insurance

It can be difficult to find affordable insurance if you have polycystic kidney disease (PKD).

Nevertheless, there are a number of specialists who offer all types of insurance to those with pre-existing conditions such as PKD - but be prepared to pay higher premiums because of the high risk of claims. And always read the small print of any insurance policy to understand the level of cover and the exclusions.

The following refers to insurance in the UK only. You must declare that you have PKD if you are asked. Insurers may or will refuse to payout otherwise, or may cancel your policy and keep your premiums.

Life Insurance

Some insurers will just turn you down immediately, while others will exclude PKD from the policy. Your premium will vary depending on the type of life insurance, the size of the sum insured and also the risk of a claim – which may also be related to your job as well PKD.

Remember that life insurance premiums rise with age and is more expensive for an older person. But it is still possible to take out life insurance when you are in your 50s, and some firms will accept without medical or health questions.

Travel Insurance

There are insurers will insure you whilst travelling if you have PKD. It’s important that you understand what the cover provides and ensure that you are getting the right policy for your needs.

Try to arrange travel insurance well in advance but remember that to tell the insurance company if your condition worsens or you are waiting for results of important tests, because this may affect the policy.

UK Insurance Companies

We do not and cannot recommend any insurer or financial services provider. However, we are confident that the companies listed below can help you. They have access to a large panel of leading insurers so that you can compare prices and choose the policy that best suits your needs.

For every policy sold, some firms will give a donation directly to the PKD Charity at no additional cost to you. These firms already work with a number of charities like us on the same basis. But please note that we are not endorsing them as exclusive providers of cover.

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Benefits

Kidney Care UK offers a UK-wide advocacy service to kidney patients.

The Kidney Care UK Advocacy Officers are all either kidney patients themselves, have a family member as patient, or have a good knowledge of health services. Their role is to speak up for kidney patients and ensure their rights are respected and their views heard at all times.

They can help patients with difficult situations where an independent, friendly and knowledgeable voice will begin to resolve their problems, however big or small. They can provide appropriate advice, guidance and support. For example, helping check if you are listed for transplant or addressing holiday dialysis difficulties.

Health professionals and NHS managers also find them useful for hearing patient views and feedback.

Advocacy Officers are trained to listen, with sensitivity and compassion, and act with the utmost confidentiality at all times.

Find out who your local Advocacy Officer is by ringing the Kidney Care UK Helpline 01420 541424. Or visit the Kidney Care UK website Kidney Care UK website.

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PKD Online Groups & Social Media

The PKD Charity uses a number of social media channels and networks, and online support communities and groups, and recommends a few groups hosted by third parties.

Facebook

We have a public Facebook Page: Click here to Like the PKD Charity Facebook page.

The PKD Charity manages and moderates two Facebook groups:

PKD Charity UK Group (closed and for UK only members)

Parents of Children with PKD (closed and UK only members)

There is a trusted Facebook group for families and individuals affected by ARPKD:

ARPKD

PKD Yahoo Group

This group has been running for many years; the members are caring and well-informed. This Group is moderated by the charity. Find out more and join the PKD Yahoo Group.

HealthUnlocked Communities (UK only)

Large network of health and social care communities, linked to NHS England.

The ADPKD Community

The ARPKD Community

Twitter

If you tweet, follow the PKD Twitter feed for instant messages and news about research, events and fundraising.


For help and guidance online, please read the PKD Charity Policy on Social Media and Online Communities.

Medical disclaimer: Content published on social media and online communities is not meant as a substitute for professional medical advice. You must consult your GP, hospital consultant, pharmacist or other health/social care professional if you have any concerns about your health or social situation.

 

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Links

National Kidney Federation Kidney Patient Association

UK charity which promotes, throughout the UK, the welfare of persons suffering from kidney disease or renal failure and those relatives and friends who care

Kidney Research UK

UK charity funding research into kidney diseases.

The Blood Pressure Association

Provides information and advice on all aspects of blood pressure.

Royal Infirmary of Edinburgh Renal Unit

Provides information and advice on all renal aspects - for patients and healthcare professionals.

Contact a Family

Only UK-wide charity providing advice, information and support to the parents of all disabled children. They always have up-to-date information on all types of benefits.

The British Kidney Patient Association

Provides a range of grants to kidney patients

NHS Kidney Care

Works with clinical teams and commissioners of kidney care to transform the services available to those with kidney disease, in order to continually drive up the quality of care.

Specialist Insurers

 

Counselling Directory

UK counselling support network. Free, confidential service.

Counselling Directory only lists counsellors and psychotherapists who are registered with a recognised professional body or those who have sent us copies of their qualifications and insurance cover.

International PKD Support Groups and Foundations

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Books

Class Health books for kidney patients

Class Health has published books for the general public since 1989, especially for people with chronic diseases. They publish a wide range of books on CKD (chronic kidney disease) and kidney failure. There is FREE POSTAGE on all orders.

To buy online, please visit the Class Books website.

Food with Thought - a cookbook sponsored by Amgen for NKF - Kidney Patients UK

This kidney-friendly cookbook is available from NKF - Kidney Patients UK. Download it free from their website or £1.50 for a mailed hard copy. Details here.

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PKD Charity is a Member of

  • Fundraising Regulator Website
  • Visit PKD International website
  • Visit Ciliopathy Alliance website
  • Visit the Genetic Alliance UK website
  • Rare Disease UK Website
  • Specialised Healthcare Alliance Website
  • FEDERG Website
  • Visit EURORDIS website