The National Kidney Federation in the UK
NKF is a small but highly effective national charity, established over forty years ago and still unique in several ways and the only UK support organisation run by kidney patients for kidney patients; providing the only national Helpline dedicated solely to renal patients, their families and carers; and are the UK’s largest producer and distributor of kidney related medical information leaflets. Right across the UK the charity currently supports 3 million kidney patients but only employ eight members of staff, one of which is a patient liaison officer – who travels across the country meeting with patients, families and groups to help improves the lives affected by this dreadful disease.
In addition, NKF campaigns tirelessly to persuade the government, the Department of Health and the NHS to provide improved treatments and the best possible patient experience for those with this very debilitating condition.
Some actions during year 2019
APPKG -The NKF continues to serve as secretariat to the All Party Parliamentary Kidney Group. At the heart of NKF’s work is campaigning and advocating to bring about a positive change in the outcomes for kidney patients and this group has a central role in bringing this about.
Annual Patient Event: Was held on 4th and 5th October 2019 at the Radisson Blu Hotel, East Midlands Airport. This venue was a new one to this event and proved to be very popular and fit for purpose. This important event enables kidney patients, professionals and carers to network and share and support each other in a relaxed atmosphere.
Kidney Life magazine: The highly rated and widely read NKF magazine is an important source of communication for patients, carers and medical professionals. The medical information often gives insights into new treatments and research and helpful information on managing chronic kidney disease.
Organ Donation – On 15th March 2019, the Organ Donation ‘Deemed Consent’ Bill gained Royal Assent and will be in place by Spring 2020. NKF have worked closely with NHS Blood and Transplant (NHSBT) with their opt out campaign and will continue to. NKF will be promoting the need for donation to be discussed more widely amongst friends and families, so that loved ones wishes can be acted upon.
Andrea Brown – Chief Executive – email@example.com 01909 544999
Jim Higgins – Chairman – firstname.lastname@example.org
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Kidney Care UK
Kidney Care UK are the UK’s leading kidney patient support charity, providing practical, financial and emotional support for kidney patients and their families and campaigning to improve care services across the UK. We help more than 100 patients every week and invest over £2 million every year to support kidney patients and their families. We believe that no-one should face kidney disease alone.
Kidney Care UK was founded in 1975 (as the British Kidney Patient Association) and has been at the forefront of supporting people with kidney disease for over 40 years. From our early days when we campaigned to introduce donor cards in the UK, we have worked hard to support and represent the interests of everyone affected by kidney disease. We are here for the young and the old, for those struggling to make ends meet, for families and loved ones and we fight tirelessly for the rights of kidney patients.
Aims & activities
To improve quality of life for those affected by kidney disease Kidney Care UK:
Provides advice, information, support and services:
We believe it’s vital that people have the best possible access to the support and information they need to live with kidney disease. That’s why we provide free access to advocacy officers working on patients’ behalves, financial support to help with money worries, a confidential telephone counselling service and expert patient information via our website and printed leaflets.
Patient Support and Advocacy —Supporting and representing patients
The national Advocacy Service plays a vital role in our patient support, providing advice and guidance on a range of non-medical issues, representing patients needing help to navigate the health and social care systems and acting as the vital link to signpost patients to the Charity’s and other organisations’ services. Welfare and benefit issues remain the biggest demand on the service at around 70% of referrals, with housing, employment, dialysis, transplant, transport and holidays making up the remainder.
Give financial support to kidney patients in need:
We deliver a responsive and flexible grants programme to support individual patients in financial difficulty. This can help struggling patients and their loved ones to have a much-needed holiday or respite break, help people re-train or buy essential goods for their homes
Make grants to renal units to improve care by funding staff posts, capital works and equipment/projects:
We respond to local needs by funding innovative projects, such as an interactive diet app to help children and their parents better manage their child’s renal diet and patient-centred service improvements as well as seed funding critical support roles, including young adults workers and psychologists. We build strong partnerships and worked in collaboration with others to deliver sustainable improvements in care services
Campaigning to inform policy:
By engaging with policy and decision makers at local, regional and national level we ensure patient views are represented and reflected in policies that affect them. Everything we do is about ensuring that the patient voice is at the heart of national decision-making. We have a Patient Advisory Group which actively supports us in all our work.
Fiona Loud – Policy Director – 01420 541424 – 01420 89438
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