UK National Kidney FederationMINUTES OF THE 32nd ANNUAL GENERAL MEETING HELD AT THE GOVERNOR’S HALL, ST THOMAS’ HOSPITAL, LONDON ON SATURDAY 26th MARCH 2010 AT 1.30 PM.
| Trustees Present: | Mrs M Higgins | Chairman |
| Mr R Cooke | Bristol KPA | |
| Mr K Modi | Lister Hospitals KPA | |
| Mr R Bradbury | SAKA | |
| Mr R Price | Six Counties KPA | |
| Mr M Abbott | Gloucestershire KPA | |
| Mrs S Lines | United Norwich KPA | |
| Miss T Sinclair | Wessex KPA | |
| Mrs B Morris | Lancs & South Cumbria KPA | |
| Mr A Sutton | Doncaster & Bassetlaw KPA | |
| Mr M Walker | Lincolnshire KPA | |
| In attendance: | Mr T Statham OBE | Chief Executive |
| Mr N Palmer | National Advocacy Officer | |
| Ms M Parkin | Office Manager | |
| Miss J Thorpe | Senior Office Administrator | |
| Mrs S Edwards | Accounts Supervisor |
Plus 21 Official voting delegates (as per register) and 18 non-voting delegates as per the Attendance Registers (attached)
A quorum of 30% of official representatives was met.
The Chairman welcomed everyone to the meeting and asked that a minutes silence be held in remembrance of Sam Wood Chairman, Young @ NKF who died in March 2011, Dr Ali Bakran NKF medical advisor and all those who had died since the last meeting.
Apologies were received from David Macdonald NKF Treasurer, Vivienne Dodds Walsgrave KPA, St George’s KPA, David Myers, Ewen Maclean Scottish Kidney Federation, Ray Mackey NEKPA, Frank Howarth NKF President, Keith Pennington Hope Hospital KPA, Jean Aplin Exeter & District KPA, Peter Spray Royal London KPA, Robert Dunn National Advocacy Officer, Deborah Duval Kidney Life Editor, Simon Lloyd Tyneside KPA. Anne Glover, Southport Kidney Fund.
It was proposed by Sandy Lines United Norwich KPA, seconded Robert Price Six Countries KPA and agreed unanimously that the minutes of the Annual General Meeting held on 27 March 2010 be approved and signed by the Chairman as a correct record.
Chairman, Marion Higgins presented the Annual Report for the year ended 31 December 2010 which had previously been circulated, commenting on the following items:
NKF had established a new working group “dialysis@home, it’s my choice” which had begun to ensure dialysis patients are given real information and choice. The Department of Health, Kidney Care had held several Roadshows around the country promoting home dialysis. NKF would now turn its attention to look into the situation for carers and what can be done to assist them.
NKF is making headway with the Department of Health to look at the possibility of harvesting organs from Accident and Emergency (A&E) units. NKF also has representation on the Transplant 2013 group who are monitoring the success of the Organ Donation Task Force.
The group had been re-launched after the election and consisted of 130 MP’s and Lords. A presentation had been given by Dr Donal O’Donoghue, Renal Tsar in November 2010 which will be followed by a presentation in March by Mr Chris Rudge, Transplant Tsar.
The Parliamentary Reception had been very successful and well attended by MP’s. KPA events had been held throughout the country.
NKF is hosting the UK version of CEAPIR patient survey aimed at improving the quality of renal treatment in Europe. Everyone was urged to take time to complete the survey. NKF would report back through KL on the results.
It was proposed by Roy Bradbury SAKA, seconded by Richard Cooke Bristol KPA and agreed unanimously that the Annual Report be adopted.
Marion Higgins reported NKF Treasurer David MacDonald had been taken into hospital that morning and she would read the report in his absence. She wished him well.
The accounts information for the year end 2010 is given on pages 9 to 22, comprising the statement of financial activities (the “statutory SOFA”) and the balance sheet together with related notes.
Whilst the “statutory SOFA” is given on pages 10 to 11 together with the related notes, a simplified version is attached to the financial statements. This simplified version – the ‘detailed statement of financial activities’ (pages 21 to 23) – is information additional to the statutory financial statements for a better understanding of the complicated statutory disclosures (which require that the incoming resources and expenditure be allocated over the various funds and activities as shown by the detailed breakdown in the notes).
As shown by the “detailed SOFA” starting on page 21 the headline figures for the year are:
Incoming resources in total are up by £130,914. Voluntary income has seen an increase of £115,739. Donations have again risen by £22800. Legacies have shown a rise of £94,019. KPA subscriptions have fallen below that recorded in 2008 and have almost halved since 2009.
Activities for generating funds – Other Fundraising - has risen to £26,573. NKF are grateful to its fundraising supporters for having chosen NKF as their nominated charity. Both sale of merchandise and the annual lottery have seen a decrease in income compared to 2009.
Total resources expended of £529,490, show a decrease since 2009 of £15,036. This can be attributed to a decrease in Roadshow costs, reduced production costs for Kidney Life and patient information leaflets. Parliamentary costs have seen an increase of £6671 which can be directly credited to the change of Government and subsequently the instigation of a new All Party Parliamentary Kidney Group. World Kidney Day has also seen an increase in costs.
Support costs have seen a decrease on 2009 of £6,244 which is mainly attributable to a renegotiation of charges relating to computer costs, telephone and service charges.
Net income of £115,605 as can be seen on page 23 is the figure shown on the “statutory SOFA” on page 10 as “net incoming resources for the year”. The “detailed SOFA” presents the breakdown of all items to that stage on a simplified basis.
Net movement of funds has seen a gain of £115,605
Total Funds as at 31st December 2010 were £1,676,713 compared to £1,561,108 at 31st December, 2009
The one year investment with the Abbey Bond and the Anglo Irish accounts are now closed and subsequently NKF has sought advice from an Independent Financial Advisor in order to ascertain the best possible solution for its investments, in what continues to be difficult times.
Global economic data has been positive but volatility will be caused by the crisis in Japan and the political issues now being seen in North Africa.
The UK has now received George Osborne’s “budget for growth” and will know UK inflation rose to 4.4% in February, which will again cause uncertainty in the markets and a possible rise in interest rates.
All charities will face obstacles in achieving their goals as support and donations may be harder to attain, but NKF will keep a watchful eye over its activities and investments to ensure growth and stability for the charity.
With regard to the balance sheet itself on page 11 and related notes, the major movement is the increase in cash at bank, which was money received on closure of the Abbey Bond, subsequently placed on a money market deal whilst awaiting advice from the IFA.
It was proposed by Denise Abbott Gloucestershire KPA, seconded by Jim Higgins Northamptonshire KPA and agreed unanimously to accept the Treasurers Report.
It was proposed by Tracey Sinclair Wessex KPA seconded by Roy Bradbury SAKA and agreed unanimously that KPA membership subscriptions for the year 2011/2012 be increased by 3% to:
| Individual membership | up to 150 | £231 |
| up to 500 | £648 | |
| up to 700 | £845 | |
| over 700 | £974 |
| Per Association | £73 |
However, during the year 2011/2012 no subscription shall be required from any KPA that participates in the NKF annual draw by permitting draw tickets to be circulated directly to their individual members, inside the magazine Kidney Life.
Timothy Statham reported many KPA’s sold NKF raffle tickets in lieu of paying a subscription. KPA’s then sent in a cheque to NKF HQ. In 2018 banks will stop producing or cashing cheques and signs of this could already be seen in the removal of cheque guarantee cards. Postal raffles would no longer be possible. Some may consider this a very serious issue and wish to take up a campaign persuade the Government to see the error of its ways in abolishing cheques. Timothy Statham asked KPA’s to discuss this issue with their fellow officers and then let the NKF officers know if it is felt that a campaign should be launched.”.
NKF request Foy & Co, Worksop, be appointed as Professional Legal Advisor to the National Kidney Federation. It was proposed by and Alison Mcquilkin York KPA seconded by Judith Sidaway. Dudley KPA and agreed unanimously Foy & Co be appointed as NKF Solicitor.
It was proposed by Robert Price Six Counties KPA seconded by Mick Walker Lincolnshire KPA and agreed unanimously N Williamson & Co, Accountants, Worksop be re-appointed Auditors for the year ending 31 December 2011.
The following were elected unopposed:
| Chairman | Marion Higgins | Northamptonshire KPA |
| Vice-Chairman | Kirit Modi | Lister Hospital Kidney Foundation |
| Treasurer | Ray Mackay | NEKPA |
| Secretary | Michael Abbott | Gloucestershire KPA |
The following were elected unopposed
| William Bradbury | SAKA |
| Richard Cooke | Bristol KPA |
| Sandra Lines MBE | United Norwich KPA |
| Barbara Morris | Lancs & South Cumbria KPA |
| Robert Price | Six Counties KPA |
| Tracey Sinclair | Wessex KPA |
| Alan Sutton | Doncaster & Bassetlaw KPA |
| Michael Walker | Lincolnshire KPA |
| Ewen Maclean | Scottish Kidney Federation |
The Chairman thanked all those retiring from the Executive for all their hard work. She gave special tribute to David Macdonald who had served on the Executive for a number of years and the last three as Treasurer. He had also served on the British Renal Services committee. She asked everyone to join with her to thank David for all his hard work and valuable contribution.
Marion Higgins thanked all the returning Executive members commenting it is a strong team and she was looking forward to working with them all again.
Frank Howarth was originally appointed as President in 2002 and the appointment has been renewed each year in recognition of his substantial contribution to the NKF. He has been and continues to be a tremendous asset to the Federation and the Executive Committee had no hesitation in recommending he be re-appointed for a further year.
Frank Howarth had agreed to serve as President for a further year.
The Chairman welcomed Professor Sir Netar Mallick to the meeting who would be giving a presentation on:
In January 1960 I joined the Urology Unit at Manchester Royal Infirmary (MRI) as a houseman. I had been working in Boston on cardiac bypass techniques for open-heart surgery and so when I found this unit had the only artificial kidney in the North West, I felt quite at home with the rather primitive but novel technology.
While the surgeons quickly became familiar with the machine, a Kolff twin coil, they took rather longer to familiarise themselves with the niceties if managing critically ill patients with acute renal failure and I learnt a lot, partly self taught. Some patients survived dramatic accidents or acute illness; that the technique had legs was obvious.
I completed training as a physician and did not meet an artificial kidney again until 1965. While I was working in the Professional Medical Unit in Cardiff, I took on the job of looking after the only Kolff machine in Wales, just at the time there was a push to create 20 units for dialysis of patients with chronic renal failure.
I found myself sitting on the National Committee in London, representing Wales. We got funding for one of these units and I designed it at Cardiff Royal Infirmary. It lasted at least 25 years, so not bad. One regular dialysis was available, transplantation followed and I participated as physician with the first transplants in Cardiff, undertaken by David Crosby.
I had been interested in the possibility of machine-operated peritoneal dialysis to replace the need for constant bag changes and with Lucas Aerospace designed and brought to market the Cardiff machine, a British first.
In 1967 I returned to Manchester, my parent University, to work with renowned renal service headed by Professor Douglas Black. I had expected to complete my training there and move on but I never left; others did and from 1973 found myself a young physician in charge of the service in MRI which had been the leading renal service in the UK for 25 years.
Young physicians need confidence and luck. They cannot afford to be too weighed down by the responsibility they carry or by the suffering they try to mitigate – but these have an inevitable, if covert, influence. In those early days of renal replacement, there were few patients and we knew them well. Nurses were then, as now a special breed. They were interested in the technology, however primitive by modern standards and courageous too. Hepatitis was a scourge and a serious out in Manchester meant that the hierarchy was suspicious and perhaps afraid of the risks that technological “advance” brought. Our staff knew the work was risky – we did not even have tests for hepatitis antigen though one was developed in Manchester quite quickly, and no vaccination. So we had to be scrupulously careful about hygiene – and were. No further hepatitis occurred in our units.
Then as now money was scarce and the government was put off renal replacement by the hepatitis scares. We struggled against sceptics and scarcity, but it was a joint effort. Patients were as much a part of the team as we were themselves and their families showing courage and tenacity in the face of illness and treatment unimaginable in its scope.
I did not realise it at the time, but it was adversity and the response to it which shaped me, as it did others. Alongside the courage and determination, of patients tackling their illness, putting up with dietary restriction, travel, long dialysis hours and having to learn to operate their machines. It was inconceivable that one would not do one’s best. It never seemed anything like the effort that patients and indeed the nurses put in, though I suppose it was challenging as one was forever struggling for resources and for help to keep patients and their long-suffering families afloat.
Yet many outsiders were generous. We received steady support and finance from charities in industry. AEI GEG was then a powerful organisation locally. The staff raised money year after year for us after we had treated one of their number. It was much later I learnt the organisers were in fact, the apparently fearsome, strongly left-winged, Union leaders. The Post Office too raised many thousands of pounds over fifteen years after a similar patient episode, but they were then at least rather moderate political.
Patients and their families generated heart-warming support locally and donations came in from many charitable efforts. We learnt as we went on. Transplantation had been early in Manchester and by the mid 1970s our results were stabilising and national comparison showed them to be in the upper quartile.
Two things helped here and both came from the same source. Mollie McGeown was a physician at Belfast. She published a paper showing it was necessary to use large doses of steroids to maintain the renal transplant, a conclusion I, a younger physician involved in every transplant had concluded. Her senior influence enabled us to persist with this same regime and patients benefitted.
She also published the results of her 100 transplants showing survival rates way higher than anyone else in the world could demonstrate. It was eventually clear that this was not a statistical outlier, but stemmed from the patient by patient care by a dedicated doctor and her team. Fortunately, we too had a strong bond between the physicians and surgeons and so had further basis for our approach, which paid off.
Steadily we developed our services with units in Manchester, Preston and Salford dialysing patients. And we helped set up dialysis for children which underpinned a particularly successful programme of transplantation in children.
All this took about a decade of effort, which was very rewarding. But patient numbers were growing, facilities still very tight and patient loyalty was to their own unit while dialysing, and then of course to our central unit if transplanted. We needed to bring all the renal patients in our region together to help us plan to make a case for facilities and to share experience. From those early years a rapport had been established between patients and staff and between the different professional groups which was unique. Nurses had much greater responsibility than in any other branch of medicine except intensive care, which itself had a strong renal element. Because of the continuous nature of treatment and the need for self help, patients were more involved in their own management and indeed, without such involvement would not have survived.
This is now a template for care in all specialties. I realised with surprise as I began to carry wider responsibilities, just how much of a lead our speciality had in this crucial field. It is these early developments which have shaped British renal services and will continue to do so.
Clearly, the life-stories of individual patients have profoundly influenced and encouraged staff; but what of the influence that patients collectively can bring to bear? Those dialysis and transplant services which have active patient groups – and I believe there are some 70 within the UK – benefit from fundraising efforts to provide equipment and research potential. They have also harnessed support from patients and families in pressing for resources or new facilities. And established patients take part in introducing new ones to the mysteries of Renal Replacement Therapy (RRT).
In the North West some thirty years ago, I was able to get a group of committed patients and families to form the North West Kidney Association, which covered the then very few renal centres and encompassed all the transplanted patients in the region. This has thrived and its influence has been felt throughout an area which contains about one sixth of the English population. It has been invaluable in defining the services needed and supporting the case for implementation. Through the NKF and its appointed representative, it assists individual patients in many ways. And it has always played a big part in the NKF itself.
With time and the maturing of large sub-regional services, strong unit based kidney patients associations have gradually taken over some of the over-arching role of the NWKPA which itself has had to adapt to the institution of care networks. And the proposed, profound changes to the NHS must induce uncertainty as to how the work of these valuable structures can be continued
Dialysis has never stood still, technically. Initially 10-14 hour sessions in hospitals or home two then three times a week was replaced by 4-6 hours or less – three times a week in hospital. And now we again experience home dialysis with longer or shorter daily sessions and increasingly portable equipment. Peritoneal dialysis, in which I have had a long interest, has waned or at least stabilised in popularity, again with major technical advances, some Manchester derived.
Alongside this, patient concerns have remained very much the same. What about work and family? Will my fistula be alright? Can I get away for a break? Can I vary my diet? Am I a trouble to the nurses and doctor? Do they like me? And many other clinical, social and personal uncertainties.
In busy services, patients may fear that their problems are too trivial to bother staff, or worry that, in raising them they might be a “label”. Senior staff may seem remote, those in regular contract seemingly indifferent.
And it can be worse after transplantation, often in an unfamiliar unit, with a different ethos. Moreover many patients are in the transplant unit for a short time and then under outpatient surveillance. It can all seem alien and disturbing.
In all these matter, KPA’s are an important, even vital bridge and probably cannot sufficiently address the fears and uncertainties of fellows, because these are so often unexpressed. But the very expression and the support that might be engendered is itself therapeutic. Medicine is always holistic and always a team effort and the patients advocate can be instrumental to the long-term success of seemingly technical treatment.
Mr Warham stated he would be interested to know what the future of renal treatment is?
Professor Sir Netar Mallick stated he did not have the answers. People are trying to produce a really good portable dialysis system. Some have been made in East Germany but there is no valued evidence for the rest of the world. At least one model is currently being trialled in Britain. The possibility of growing kidneys for transplantation is also being looked into. It may be possible to transform kidney disease genetically. The treatment of renal disease has seen great progress, but this could be put back by the changes to the health system. In 20 years both transplant and dialysis may well be on a totally different basis
The Chairman thanked Professor Sir Netar Mallick on behalf of the meeting for giving his time to provide a very interesting presentation.