Andrea Brown, NKF Chief Executive 

Celebrating 45 Years of the National Kidney Federation

In 1978 there were a handful of Kidney Patient Associations (KPAs) across the UK. That year a letter from Brian Pearmain from Addenbrookes KPA in Cambridge suggested that representatives from the various KPAs should get together to form a national patients’ organisation. At the first meeting in a Kings Cross Hotel in London on 15th July 1978, Brian explained why he had been motivated to suggest a new organisation.

The KPAs were all aware of the British Kidney Patient Association which raised large amounts of money for kidney patients. However, in its campaigning and launch of the Donor Card it gave the impression that life on dialysis was intolerable and, though portraying life in this way certainly helped to generate funds from a sympathetic public, Brian felt that dialysis patients were being shown as helpless and probably unemployable. Brian and many of the people there had been on dialysis for several years and were all holding down full-time jobs or were fully occupied in one way or another. Remember that dialysis in those days entailed three sessions per week each of at least 10 hours duration and there was no EPO to combat anaemia.

Brian felt that a new patient-run organisation was needed that could speak for patients and truly represent their views.  Everyone agreed with him and soon a committee was formed with Chairman – Brian, Vice-Chairman – David Benoliel (Six Counties), Secretary – Ruth Lupton (Oxford), Treasurer – Ray Tennick (Whitley Bay). The NFKPA (National Federation of Kidney Patient Associations) was now formed and the inaugural meeting was held on 14th October 1978.

The KPAs grew rapidly and associations from all over the country joined the NKF. The NKF was run entirely by volunteers and all of them worked really hard to build a truly democratic body that represented all UK kidney patients.

From the very early days the NKF gained access to officials at the Department of Health and the Minister for Health. 

In 1980 the first patients’ conference was organised, at the Royal Society of Medicine in London. It was a revelation – doctors discussing cases with patients and treating them as grown-ups. Before this patients had only managed to ask questions when in hospital and were probably disadvantaged by having few if any clothes on!

Lady Caroline Chandos attended the meeting with her husband who was a dialysis patient at the time. Lady Caroline became the first editor of Kidney Life’s predecessor magazine Newsflash. She was instrumental in helping NKF get access to those members of the House of Lords who were interested in renal matters.

I have worked for the NKF for 11 years and have seen much change in our work in that time. The charity has gone from strength to strength to achieve its main objectives of being a patient support and campaigning charity. You can read all about the history of the last 45 years of the NKF, year by year below.

Please think about joining your local KPA if you are not a member, these wonderful local volunteer run groups are truly a magnificent asset for any patient. Have your say, have your voice listened to and be part of the future of your kidney journey.

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45 years and counting…
A year by year timeline of how the NKF has developed over the years

1978
A letter from Brian Pearmain from Addenbrookes KPA suggests representatives from various KPAs could form a national patients’ association. The National Federation of Kidney Patient Associations was formed and the inaugural meeting was held on 14 October 1978. Brian became the first Chairman. The association grew rapidly and other associations from all over the country joined. The Federation was run entirely by volunteers who worked hard to build a truly democratic body that represented all UK kidney patients. Access was gained to officials at the Department of Health.

1980
The first patients’ conference takes place at the Royal Society of Medicine in London.

1983
The new office for the NKF opens. At that time there were 34 member associations and 4 associate groups.

1984
David Benoliel becomes NKF Chair.
The NFKPA runs a major campaign to raise awareness of the benefits of transplantation.
Letter to PM, Margaret Thatcher urges her to bring renal treatment in the UK up to European standards. 
NFKPA video, renal failure awareness programme, wins an award.

1985
The NFKPA sends leaflets to GPs across the country to raise awareness of modern treatments and successes.

1986
Alan Baker becomes NKF Chair.

1987
Fred Tring becomes NKF Chair.
NFKPA lobbies Parliament to bring in American required request legislation.

1988
NKF Executive Committee meet Health Minister Edwina Currie to discuss issues affecting kidney patients.

1989
First issue of Kidney Life published. Sir Michael McNair Wilson, the only MP on dialysis, becomes President of NFKPA.

1990
Worksop office opens.

1991
John Powell becomes NKF Chair.

EPO is licensed by Department of Health, but they refuse to provide the £10m needed to improve the quality of life for 4,000 patients. Members urged to put pressure on doctors, health authorities and MPs.

1992
Change of name to National Kidney Federation with new logo created.
The first ‘National Transplant Week’ suggested by the NKF is held from 21st – 28th July. 
NKF sends renal equipment to the Bulgarian Kidney Patients Association, to help 2,600 patients with lack of supplies.

1993
NKF membership numbers increases to 54 KPAs.
NKF hosts the European Kidney Patients’ Association (CEAPIR) meeting.

1994
David Poulter becomes NKF Chair.
Later in the year Frank Howarth becomes NKF Chair.
Organ donor register is set up in response to pressure from NKF.

1995
David Poulter becomes NKF Chair.
NKF urges Department of Health to produce guidelines to prevent transmission of Hepatitis C.

1996
NKF takes action over a North West rationalisation plan to close a transplant unit and reduce dialysis hours. Renal review confirms service failures.

1997
Austin Donohoe becomes NKF Chair.

1999
Timothy Statham OBE, joins NKF as Chief Executive.
All Party Parliamentary Kidney Group (APPKG) formed. This group continues to this day and is managed by NKF.
NKF website and NKF Helpline launched.

2000
Ian McGeehan becomes NKF Chair.
Later in the year Jean Aplin becomes NKF Chair.
NKF launches Know Your Numbers card and joins BMA Transplant Partnership. NKF now largest provider of information leaflets for kidney patients in the UK.

2001
NKF tells Audit Commission 'Patient transport is in crisis.'
Kidney Alliance launches Framework for Planning and Service Delivery. Alan Milburn announces Renal National Service Framework.

2002
NICE report on home haemodialysis influenced by the NKF.
An additional Helpline Manager is appointed.

2003
Gordon Nicholas becomes NKF Chair.
NKF celebrates 25th anniversary at the House of Commons.
NKF wins clarification of living donor expenses – thanks to the action by the NKF, the Department of Health issued new guidelines on living donor expenses that establishes that they are not liable to income tax.

2004
Gary Lloyd becomes NKF Chair.
Later in the year Michael Hill becomes NKF Chair.
The NKF represents at this time all 37,500 patients in the UK suffering End Stage Renal Failure.
The NKF during this time employs seven full-time and three part-time staff.
NKF welcomes part one of Renal National Service Framework.
PM Tony Blair meets 10 transplant recipients to celebrate the tenth anniversary of the NHS organ donor register.
The influence of the National Kidney Federation continues to grow.

2005
The National Kidney Federation represents the 40,000 UK patients suffering End Stage Renal Failure (ESRF) and sets out to expand activities to include support for the 2.5 million Chronic Kidney Disease (CKD) patients stages 3 to 5.
NKF becomes member of the International Federation of Kidney Foundations.

2006
Quarterly e-newsletters are introduced in addition to the Kidney Life magazine.
The APPKG with the NKF launches its Transplant Manifesto entitled ‘More Transplants, Saving More Lives’. Altruistic organ donation becomes legal.
NKF appoints a Regional Advocacy Officer for the Midlands.

2007
Ken Tupling becomes NKF Chair.
Later in the year Ray Mackey becomes NKF Chair.
A strategy to improve organ donation is announced.
NKF merchandise becomes available.
NKF launches National Transplant Week at the House of Commons.
Novel anaemia treatments arrive in the UK.

2008
In September 2006 it became legal in England to donate an organ ‘altruistically’.
After a 10 year NKF campaign, Department of Health publishes Organ Donation Taskforce Report.
Downing Street responds to the NKF’s holiday dialysis petition.
The APPKG launches its dialysis manifesto at the NKF Annual Patients' conference.
The NKF office moves to Coach Road, Worksop, Shireoaks in Nottinghamshire.
The NKF Industry Partners Group is created with pharmaceutical and machine manufacturing companies to consider issues and find solutions to improve the quality of life for kidney patients.

2009
The NKF Helpline reaches its 10th anniversary.
NKF United - a group of football players in Leicestershire forms to promote the NKF.
A new position is appointed, NKF Head of Fundraising.

2010
Marion Higgins becomes NKF Chair.The NKF is now able to accept payment and debit card via the NKF website.

2011
NKF announces expansion of advocacy services and a National Advocacy Officer is appointed.
Sir Ranulph Fiennes and Lawrence Keogh become NKF Patrons.
APPKG third summit - ‘Transplantation and Organ Donation in Culturally Diverse Groups Including BME Groups.’

2012
Five new advocacy officers recruited.
A manifesto launches to improve kidney donation and transplantation within black and minority ethnic communities.

2013
Kirit Modi becomes NKF Chair.
New Kidney Life brand identity launched.
The NKF launches new logo and website.
First KPA day was held.
The APPKG calls for more home dialysis.
NKF welcomes the ‘Taking Organ Transplantation to 2020 strategy”.

2014
Nina Wadia joins NKF as patron.
Countdown to soft opt-out changes in Wales for organ donation.
NKF challenges NHS England’s threats to cut the tariff for dialysis and change commissioning arrangement for dialysis services in England.

2015
Jim Higgins becomes NKF Chair.
The NKF continues developing partnerships with a wide range of groups and individuals.
NKF victory for over 27,000 UK kidney patients persuading Government to shelve plans to remove dialysis provision from specialised commissioning.
A massive 106 MP strong APPKG met.

2016
David Marshall becomes NKF Chair.
Choctober fundraiser introduced.
A sponsored walk titled ‘Best Foot Forward’ is introduced’.

2017
APPKG discusses progress of research into ways to treat kidney failure and address the continuing fall in living kidney donation numbers.
Government announces consultation on organ donation opt-out.

2018
Timothy Statham, NKF Chief Executive retires.
GDPR changes.
A victory as transport charges dropped following NKF’s long battle. Kernow CCG drops plans to charge kidney patients for transport to and from dialysis. Joint efforts by NKF and APPKG.
The NKF teams up with Drugstars an app provider to remind you to take your medication.

2019
Andrea Brown becomes Chief Executive.
Scottish Parliament approve opt-out organ donation system, Wales now has highest consent rate of all UK nations.
TASTE! cookbook is published.

2020
Jim Higgins becomes NKF Chairman.
NKF supports patients through the COVID-19 pandemic via the Helpline.
NKF hosts a webinar with renal professionals and kidney patient representatives to explore dialysing at home during the pandemic.
Water Challenge makes its debut.

2021
NKF launches campaign: Increasing Home Dialysis in the Context of COVID-19. Due to the success of the sponsored walk 'Best Foot Forward' in previous years, the fundraising challenge was extended in 2021 to encompass the entire month of June becoming an annual fundraiser.
NKF publishes strategic plan 2021-2026.
NKF produces Patient Support Pack – a guide for new kidney patients starting dialysis.
Joint study with NKF and Kidney Research UK explores how well the COVID-19 vaccination protects dialysis patients.
Peer support service launches and the webinar series for patients and carers.
A virtual patients’ event is held in October due to the pandemic.
NKF webinar series launches.

2022
NKF teams up with new health and wellbeing platform Kidney Beam.
Meeting the Cost of Home Dialysis Treatment – ‘Together We Can’ campaign is launched.
Increasing Home Dialysis in the Context of COVID-19 in the UK – One Year On report published.
Kidney Patients Dialysis and Transplant cards are launched via NKF Helpline.
NKF Honorary President Kirit Modi presented with MBE.
NKF team up with England Transplant Football Association.
Parliamentary reception hosted by NKF and sponsored by Brendan Clarke-Smith MP, Chair of the All Party Parliamentary Kidney Group.

2023 so far
Jim Higgins retires as Chairman and is replaced by David Coyle.
Organ Utilisation Group report published.
National Kidney Federation Parliamentary Reception held a pre-World Kidney Day event.
NKF webinar series continues.