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The largest kidney patient charity in the UK. Run by kidney patients, for kidney patients.

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NKF Business - Annual Report 2013


Annual Report of the Executive Committee 2013

January 2013 to December 2013



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Together we can - and together we did!


The 2013 Half Yearly report announced that during the year the name National Kidney Federation would give way to the shorter and snappier title of NKF – and it did, together with a brand new Logo, corporate image, and website. 


It also announced that a much closer working relationship was going to be established between the NKF and its KPA members – and that is happening.  The AGM ( 23rd March ) broke new ground by being located in the Midlands ( not London ) and by giving the day over to two way dialogue between the NKF and the KPAs who turned out in force despite absolutely dreadful weather.


That same day saw the election of Kirit Modi as Chairman, Ray Mackey as Vice Chairman, Michael(Bud) Abbott as Treasurer and Michael ( Mick) Walker as Secretary.  A brand new Executive committee was elected.




The new Executive Committee has worked well this year and I want to thank all members of the Executive as well as all staff for their valuable contribution this year. In particular, I want to thank my fellow officers, Ray Mackey, Bud Abbott and Mick Walker for their support as well as Frank Howarth, our President, for his helpful advice. The Executive established three committees: Finance and General Purposes, Fundraising and NKF Conference. I am most grateful to David Marshall for chairing the Fundraising Committee and to Tracey Sinclair for chairing the NKF Conference Committee. We also appointed lead executive members for specific areas. Many thanks to Tracey Sinclair and Mick Walker for leading on Young@NKF, to William Beale for leading on Green Nephrology ,  David Marshall for leading on Health and Safety and to Bud Abbott who led on Risk Management. The Finance and General Purposes Committee tackled our budget position by developing an annual budget, monitoring it rigorously every two months and ensuring we met our overall budget target for 2013. I am grateful to the members of the Senior Management Team, Tim Statham, Margaret Parkin, Nick Palmer and Pete Revell for their support and advice to the Executive Committee throughout the year.   



The issues we face


The NKF lost no time in establishing good working relationships with NHS England (replaces the renal department of the NHS, Kidney Care and central commissioning) and with the new Clinical director Richard Fluck (replaces Donal O’Donoghue who becomes a NKF Medical Advisor).


This was just as well considering how the notorious “Bedroom Tax” is adversely affecting kidney patients and how desperately our members need a clearer and more uniform structure for  dealing with dialysis away from a base unit. These issues, together with the need to expand Home Hemodialysis and the difficulties of suffering from PKD are being tackled head on by the NKF, assisted enormously by the brand new team of eight Advocacy Officers now uniformly sited across the UK and part paid for by the BKPA (British Kidney Patient Association) to whom we owe a huge debt of gratitude.  In all these issues we have had tremendous support from the All Party Parliamentary Kidney Group of MPs and Lords in Parliament – thanks in particular to Madeline Moon MP, Glyn Davis MP and Duncan Hames MP.


The benefits paid by the Government to kidney patients have altered.  The NKF was quick to reflect those alterations on its website, and the NKF thanks all those involved in bringing the information up to date. Patients should refer to this website www.kidney.org.uk for the latest help and advice. Taking Transplantation to 2020 Strategy


NKF worked closely with NHS Blood and Transplant (NHSBT) throughout 2013 and in particular made a number of submissions aimed at influencing the impending 2020 Strategy document.  The NKF welcomed the

strategy document when it was published, in particular the move away from Donation towards Transplantation, but was critical of the lack of detail and the restricted ambitions it contained.  Unless transplant numbers double, kidney patients will continue to die while waiting for a transplant, and the NKF believe that the strategy should have reflected that.  The NKF will look for the detail to emerge from NHSBT and the four governments and will continue to press for changes it believes to be right.






The expansion from three to eight NKF Advocacy Officers has been an enormous step forward for the NKF and a huge success.  Led by the full time Head of Advocacy, Nicholas Palmer, we now have part-time officers covering every region of the UK.  They have quickly become well known faces in the “renal world” and someone to be turned to when things aren’t right.  Closely monitored by Nick and also by the Executive committee, a three monthly report of their activities is submitted to the BKPA (the BKPA fund five of the officers). The BKPA also make available “hardship” grants which can be accessed directly from the BKPA or via the Advocacy team.  The Advocacy team has also introduced a quality assurance survey that is sent to recipients of the service.


Dennis Crane the Advocacy Officer for the North West is to retire in 2014 and an advertisement will be placed in Kidney Life later this year to source a replacement. The NKF is indebted to Dennis for all his hard work over many years






Mini Summit


The decision by Wales to press ahead with an Opt Out system for Organ Donation, together with the possible decision by Northern Ireland to follow suit in the future and Scotland’s decision to postpone a decision for at least two years coupled to England’s refusal to change at all at the moment, has highlighted the very real differences that encompass the four countries of the UK in many ways that impact on renal patients. The NKF needs to put suitable plans in place to ensure that we develop effective contacts at both civil servant and political level in all four countries  – the mini summit held in November between relevant members of NKF staff was the first step toward that goal.




Finance continues to be a real struggle, yet even in these difficult times we have made forward strides in reducing expenditure and even bigger strides increasing the income we get via our fundraiser Pete Revell, from legacies and from donations. We remain indebted to our Industry Partners for the support they give this charity during a marked period of renal product contraction.


During the year the NKF has benefited from receipt of legacies left to the charity by former patients and members of the general public.  This is a remarkably helpful way to help the NKF and this report urges all readers to consider this charity when making their will.


World Kidney Day


Many thanks to all KPAs and volunteers, for making WKD 2013 a success.  The demise of the Kidney Alliance meant that the NKF had to step forward with plans to ensure that the 13th March 2014 remains a WKD success in the UK.  Together with three other charities PKD, KRUK and BKPA plans are now being laid to ensure this happens and that the UK activity is properly led.


Kidney Health: Delivering Excellence


The NKF was fully represented on this group by Nick Palmer, and was pleased to support the development and publication of this important document.  The document is seen by some as the next step following the expiry of the Renal NSF. The NKF has now started working with others in developing a plan to implement some of the recommendations set out in this report.


Clinical Reference Groups


The NKF is pleased to report that it has representatives on both the Transplantation CRG (Nick Palmer) and the Dialysis CRG (Mark Davis).  The NKF is keen to ensure that patients are made fully aware of the service specifications and that effective monitoring takes place so that we have a more consistent provision of services throughout England.




Following a meeting hosted by Kidney research UK at which members of the Rare Renal Disease Association explained their current status and the levels of support their individual groups could rely on, the NKF determined that each of these groups should be encouraged to join the NKF and gain the support that the NKF could offer.




Issues affecting Black, Asian and Minority Ethnic patients


The NKF has been proactive in raising issues facing BAME patients. A national group, called the National BAME Transplant Alliance was set up to lead on these issues and has the support of NHSBT as well as the four governments. The NKF has worked in partnership with a number of KPAs and others and initiatives have taken place in Leicester, Watford, Manchester, Birmingham and Derby.  


Kidney Life




Kidney Life is such a remarkably good communication tool for the NKF that its circulation is to be expanded.- look out for little holders in renal units encouraging patients to fill in a form to obtain their free copy posted to their homes. Congratulations to its editor Deborah Duval who four times a year turns out such an attractive and informative magazine.




Whilst the Helpline continues to be an essential support service for patients and carers the NKF has noted a swing away from email approaches back towards telephone calls, however it is now also evident that many patients are discussing their conditions with others over social networking media and the NKF needs to monitor this carefully and interject whenever appropriate.




The Helpline creates and produces over 200 titles of medical information leaflets that are sent out to individual patients and renal units upon request.  This is a massive logistical task and the mechanical printer that has served the NKF well for twelve years is in need of replacement.  Thanks to Helpline grants payable to the NKF from supporters, the NKF has been able to place an order for a new and up to date machine.  This should prove to be worth its weight in gold.




Our year started with our presence at and contribution to the young adults residential weekend in the Peak District, where we met many of our young adult patients. There has been a new young adults strategy group set up (Tracey Sinclair `Exec Member` and Mick Walker are on the Group) with a sub group (Mick Walker `Secretary` on the working group of 11 people) to look at transition from paediatric units to an adult unit and we even had two very amusing young adults speak at the NKF Conference 2013




Health and Safety


Twelve months ago the NKF reviewed its health and safety practices, not only for HQ but for our remote workers such as advocacy officers.  The NKF used professional H&S advisors and over the last twelve months the executive together with staff have been working to resolve the recommendations made by Ellis Whittam. Several minor changes have been made and the NKF has introduced online H&S training modules for all members of staff to complete. Our next annual audit is due and we will once again ensure that the NKF takes the necessary action to comply with its legal obligation and protect members of staff and visitors.


KPA Newsletter


It is the NKF’s intention to establish an electronic Newsletter between the NKF and its KPA membership; this would be sent out via email and would be at regular intervals in order to keep KPAs closely informed in a timely manner.  It will be the first IT task after work on the NKF website is completed.


The Executive committee has further resolved to encourage more eligible groups and formal KPAs who are not yet members of the NKF to become members in order to strengthen the patient voice.


Annual Conference (formerly known as NKF Roadshow)


The feedback from this October Conference has been excellent, it appears to have been one of the best NKF conferences ever – thanks to Tracy Sinclair, Margaret Parkin and the rest of the Conference team for their sterling work. The Hotel however fell short of our needs and a decision has been taken to find a different venue for the Conference in 2014.






Following a badly researched programme about Transplantation in “Holby City” the BBC were publically criticized by NHSBT.  Following this, Eastenders who were also planning a Transplantation storyline asked the NKF for advice and assistance which we were happy to give, however the storyline strayed from reality in several respects and is still ongoing at the time this report was being prepared.




The NKF is sad to record the death of George Finch who as part time grants raiser did so much excellent work to raise funds for the NKF over a number of years.


The NKF is pleased to welcome Donna Blizard and Heather Mooney to the accounts team at NKF HQ




The next Annual General Meeting will be held on Saturday 29th March 2014 at the Arden Hotel , A45, near Birmingham National Exhibition Centre (NEC).


Ranulph Fiennes has stood down as a patron of the NKF, but we are pleased to announce that Nina Wadia (Eastenders actress) has





Joined Lawrence Keogh in the role of NKF Patron


Nina Wadia






I commend this report to you


Kirit Modi




































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