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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 of the Executive Committee 2012 - 2013

 

The NKF has achieved success on a number of fronts and can be proud of these achievements in what can best be described as an economically challenging year. In a time witnessing an increased renal patient need for the services the NKF provides, cut-backs within the NHS and in charitable donations have driven the NKF’s decision to expand its national appeal in the form of a new modern and up-to-date image and website, and a full time professional Fundraiser, whilst trimming all internal expenses considered not vital to the smooth running of the charity. This has been a difficult balance to achieve but the NKF is now in a strong position both financially and administratively to achieve its goals.

The Officer Team and Executive Committee

The AGM 2012 saw the re-election of Marion Higgins as Chairman, Kirit Modi as Vice Chairman, Ray Mackey as Treasurer and Michael (Bud) Abbott as Secretary. Sadly Marion had to step down from the Chair due to ill health part way through her third term. Kirit Modi took over these responsibilities as Acting Chairman, and will remain in this post until the AGM 2013. The full Executive Committee consisted of these four officers plus Alan Sutton, Barbara Morris, Bob Price, Ewen Maclean, Claire Lewis, Mick Walker, Richard Cooke, Sandy Lines, Tracey Sinclair, William Bradbury and a co-option William Beale. During the year Richard Cooke, Ewen Maclean, Claire Lewis and Sandy Lines stood down.

The NKF would like to place on record its thanks to its former chairman, Marion Higgins for her invaluable contribution during her two and a half years at the NKF helm.

Advocacy

The NKF made an application to the British Kidney Patient Association (BKPA) for funding during 2011. This application was successful and facilitated the appointment in April 2012 of a further five NKF Advocacy Officers to augment the three already in post. The NKF now boasts a Head of Advocacy (Nick Palmer), a full time Scottish Officer, a part time Welsh and Northern Ireland Officer and five other part time regional officers positioned throughout England. Each of these officers has undergone a period of intensive NKF training and is now working in the field.

Denis Cawdron retired as Advocacy Officer during the year. The NKF would like to place on record its thanks to him for his excellent service.

Campaigns

NKF-BME Transplant Summit

As a result of the 2011 ‘NKF - BME Transplant Summit’ held in the House in of Commons, hosted by the All Party Parliamentary Kidney Group (APPKG), the NKF published a Manifesto identifying four strategic challenges and calling for 12 specific calls for action. It has been satisfying to observe that this Manifesto triggered an immediate response by the Department of Health (DoH) and NHS Blood and Transplant (NHSBT) acknowledging these challenges and the need for action. As a result a working group has now been set up called the ‘National Black and Minority Ethnic Transplant Alliance’ (NBTA), co-chaired by Kirit Modi, tasked with monitoring the progress of the Manifesto’s calls for action.

Increased focus on Transplants

The NKF has submitted a detailed request to NHSBT putting forward the argument for more transplantation, and a change of focus away from the organ donor register (ODR) and towards more transplant operations. Kirit Modi also issued a press release in which the NKF expressed concern that the 50% target, promised by NHSBT, in increased organ donation, was unlikely to be achieved. It is hoped that the NKF submission will be incorporated into the new five year NHSBT strategy plan due to be published in April 2013.

Wales. Opt out versus opt in

The NKF has noted that Wales is to press ahead with its plan to change the ‘Opt In’ system of organ donation to one where people in Wales will be required to ‘Opt Out’ if they do not wish to donate their organs after death. A careful assessment of the number of transplant operations carried out once this shift in policy is instigated, will be required in order to gauge its impact upon organ donation.

Dialysis at Home

Dialysis at home is considered to be of benefit to the long term survival of kidney patients and offer them an improved quality of life. This method of dialysis will also offer cost benefits to the NHS. The NKF is frustrated by the clear lack of progress in offering this method of dialysis as an automatic choice option to all patients requiring dialysis, and will is continue to press for this improvement in patient care at every opportunity. The NKF plans a Home Dialysis Summit in the House of Commons (HOC) in January 2013, and meetings with Health Ministers to press home the urgency of this change in practice.

Note:

In order to prevent any confusion, the NKF now places on its website current ‘Lines to Take’ which is helpful to NKF representatives when faced with media questions.

The All Party Parliamentary Kidney Group (APPKG)

APPKG Officers are: Madeline Moon MP (Co Chair), Glyn Davies MP (Co Chair), Duncan Hames MP (Vice Chair), Lord Davies of Coity (Vice Chair), Rosie Cooper MP (Secretary). The group held a special meeting at which a presentation was made by the Polycystic Kidney Disease Charity (PKD). This was well received. Chris Van Roon has now stood down as Kidney Ambassador in the House of Commons, employed by the NKF.

Organisation

Image and Profile

During the year a subcommittee chaired by Ray Mackey was appointed by the Executive Committee with a remit of modernizing and improving the image and profile of the charity. This work is on-going. However the sub-committee has already produced a new logo, strapline and corporate image. A new webmaster has been appointed charged with a complete overhaul of the current website design and accessibility to information. A new website is due to be released in Spring 2013. Kidney Life is also to be modernized. Most importantly, whilst the legal name of the charity will remain the National Kidney Federation, the charity is now to be known as the NKF. The AGM in 2013 has also been subject to modernization in order to increase attendance by all Kidney Patient Associations (KPAs) and will be held in Birmingham.

The NKF’s goal is to increase and improve awareness of kidney disease by becoming a household name throughout the UK. To achieve this it needs the co-operation of its KPA members.

Worksop Staff

2012 saw the departure of Joni Thorpe , the Assistant Office Manage and the arrival of two part-time members of staff: Andrea Brown manning the Helpline and Tracey Hill in Accounts. Both Margaret Parkin and Sue Edwards have moved from full time to a four day week. A system of staff appraisal has been introduced.

Accounts and HR

Wright Vigar are NKF Accountants and Auditors, taking over from Williamson and Co. Ellis Whittam is the NKF’s Human Resources (HR) and Employment Law advisor

Business Plan

The Executive Committee also agreed a successor five year business plan called ‘Next Steps in Serving Kidney Patients’.

Finance

The NKF expansion plans have necessitated considerably increased expenditure at a time when income has been reduced for reasons outside of the charity’s control. For only the second time in its history the charity has spent more than it brought in, and had to draw on its reserves. The Executive committee is fully aware that this situation must be reversed as soon as possible, and that new income streams must be sourced and secured. It is expected that the NKF’s new Head of Fundraising, Pete Revell will lead these new initiatives.

The NKF remains indebted to the Industry Partners who supported it with sponsorship during 2012, and for offers to host and run training sessions for our Trustees. One of the partners also produced a renal cookbook with NKF support and in the NKF name.

Helpline

Calls to the Helpline are now free of all charge to callers. This essential service, working in tandem with the NKF Advocacy Officers, provides much needed support, advice and information to our patients, their family and friends. The Helpline distributes, on request, many thousands of leaflets and in excess of 200 uniquely titled NKF renal medical information packs.

Kidney Life

The NKF’s flagship quarterly magazine, posted free of charge to patients, continues to go from strength to strength. Our thanks must go to its editor Deborah Duval. Plans are well advanced for a new look in 2013.

Annual NKF Conference

After a two year period using the title ‘The NKF Annual Roadshow’ the NKF will now revert to using the title ‘The NKF Annual Conference’. The Roadshow held in October 2012 was considered by many to have been the best yet and the NKF is determined to build on its success. We aim to attract 400 patient delegates each year but recognise that rising costs (although heavily subsidized) threaten this goal. Thanks to Barbara Morris and her Conference team for all their work.

Finance and General Purposes Committee

The Executive Committee have established a new Finance and General Purposes Committee to assist its work. Several new NKF policies were introduced as a direct result: Complaints Policy, Appraisal Policy, and a Recruitment Policy. This subcommittee has also introduced various training sessions for staff and Executive Committee members.

Senior Management Team

During the year the Chief Executive established a senior management team to assist him with his duties. The team meets monthly.

Kidney online communities

The NKF established three new communities on its website (Early Stage CKD, Dialysis and Transplantation) where patients can message each other and answer each other’s questions. The groups have already attracted 503 participating members.

Young@nkf

The NKF is grateful to Executive Committee members, Tracy Sinclair and Mick Walker, who together keep a very active group of young patients in communication with each other via Facebook and Twitter. Plans are also being made to appoint regional leaders of young@nkf.

Other Organisations

The NKF continues to value its links with related charities and other renal institutions, and has vowed to work I partnership In this way whenever and wherever this is to renal patients’ advantage.

In conclusion

The current (we hope, temporary) financial difficulties must not cause us to delay our campaigning activity. Patients need to experience tangible progress, now. There is much work to be done.

I commend this report to you

Kirit Modi

NKF Acting Chairman