UK National Kidney Federation| PRESENT: | Mr M Hill | Co-Chairman (Meeting Chairman) |
| Mr G Lloyd | Co-Chairman | |
| Mr R Mackey | Vice Chairman | |
| Mr D Griffen | Treasurer | |
| Mr K Tupling | Secretary (10.30am) | |
| In attendance: | Mr T.F.Statham OBE | Chief Executive |
| Mrs J Bartlam | Office Manager | |
| Mr R Dunn | Advocacy Officer | |
| Mrs J Oldfield | Helpline Manager | |
| Mrs K Wright | Kidney Life Editor | |
Plus 27 Official representatives and 44 representatives as per the Attendance Registers. |
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A quorum of 30% of official representatives was met.
Apologies were received from Frank Howarth, President, John Powell, Southend, Michelle Harris, Exeter.
It was proposed by Lewis John Powell (SAKA), seconded by Shirley Griffiths (Basildon) and agreed unanimously that the minutes of the meeting held on 27 March 2004 be approved and signed by the Chairman as a correct record.
The report had been circulated prior to the meeting to allow time for members to read it and any questions would be taken. Co-Chairman, Mick Hill in reinforcing the statement in the report, called for a vote of thanks to the Worksop staff for their hard work both in the preparation and during the conference weekend.
Gordon Nicholas asked if a plan of action had been prepared to fight the three line whip imposed by the Government to vote down an amendment to change to “Presumed Consent”. The Chairman replied that whilst the NKF supported Presumed Consent it had been agreed to defer any action to a more opportune time after the General Election when it would be revisited with vigour.
A question was asked as to where information could be found outlining NKF’s support of Presumed Consent. It was explained that in 1999 the Council voted to support Presumed Consent and to create an official NKF Policy Statement to this effect. The Policy Statement appears on NKF website along with other Policy Statements and is produced when necessary for publicity purposes.
Tim Statham stated that the Three Line Whip was not an isolated incident. There was a general lack of Government will in support of renal services at other times. NKF Industry Partners and nephrologists also share NKF’s concern and the subject is to be discussed at a forthcoming industry partners meeting.
The Treasurer presented the half yearly annual report, commenting on the following:
Overall, the position was healthy.
Income
A total income of £310,922 is comparable with last year. The increase in funding from industry partners was pleasing.
Draw Income (£25,143) is down by £5800 compared to last year, but is comparable with earlier years. It is possible that the 25th Anniversary year gave rise to the increase last year.
Helpline income (£500) and Leaflet project income (£4,348) are down compared to last year. This source of income relies on grants from Grant Making Trusts and no large donations have been received this year.
Expenses
Expenses of £205,193 show an increase of around £30,000 over the same period last year. This is mainly due to increased staff costs as a result of employing 3 extra people for Helpline and Regional Advocacy Officer projects.
Other Meetings expenses have increased to £9974 compared to £5,388 last year as a result of the two Informed Patients Workshops which have taken place.
The increase of £1,000 in Parliamentary costs was expenses for All Party Parliamentary Group meetings which had been categorised to Other Meetings in the previous year.
Bob Price (Six Counties) commented that their KPAs banking policies were currently attracting higher rates of interest than those of the NKF and asked if NKF were considering changing. The Treasurer pointed out that the Federation was largely following professional advice by investing in low risk accounts. Mick Hill pointed out that NKF currently banked free of charge, but the large amount of NKFs banking activities would definitely attract bank charges with any other bank. These charges would be large and would counteract any increase in interest rates. He asked Bob Price to forward details of his accounts to the Worksop Office for consideration.
Other suggestions were given for banking but it was pointed out that there was a difference between personal and charitable accounts, which do not attract the same advantages. Mick Hill pointed out that a charity of NKFs significance was treated by banks as a business and charged on that basis.
Congratulations were given to Ray Mackey and his committee for producing an excellent conference.
Ray Mackey said everything had appeared to go smoothly with the conference. He thanked everyone for coming and said he hoped they had enjoyed it. He urged everyone to complete their questionnaires and return them to the Worksop office as they were important in planning for future years.
Conference 2005 would be held at the Hilton Hotel, Blackpool, 30 September to 2 October.
It was suggested that as 2005 would mark 10 years of sponsorship by Fresenius that they may wish to make this a special occasion. It was announced that Fresenius had agreed to sponsor the conference to the same level as this year so would be financially restricted and may only choose to celebrate by having a session dedicated to them.
The Chairman introduced Knud Erben and thanked him for attending the conference. Knud Erben expressed his gratitude at being invited and complimented NKF on a successful conference. He explained the work of CEAPIR and how it operated. From discussions at their General Assembly they had discovered that the same basic problems were common to every country. They were trying to work towards rectifying these problems through the EU Parliament. He gave a brief outline of the position in Europe and urged kidney patients to take responsibility for their care as they were the ones who could represent themselves best. Doctors and medical professionals could not be expected to represent patients’ rights. It was important for CEAPIR members to lobby the EU Parliament together to improve treatment for all kidney patients throughout Europe.
Chris Roberts (Lister KPA) said he felt there was a need to promote the organ donor card and that NKF should keep lobbying to improve the shortage of organs. David Griffen said that as the NKF did not engage with the public as often as KPAs so they should take the responsibility to promote the donor card.
Bob Price asked Knud Erben if the CEAPIR name was as obscure in other countries as in the UK and would it help to have a different name. Knud explained that the organisation’s name had been changed to European Kidney Federation but the majority of CEAPIR members wanted to retain their traditional Latin name also, which, if nothing else, proved a good conversation opener.
Ken Tupling said he believed the NKF should take the lead in promoting organ donation by encouraging the Government to consider getting the Next of Kin to sign the organ donor card at the same time as the donor. This would indicate that the subject had been discussed and may help staff in intensive care when approaching bereaved relatives. Ray Mackey supported this idea.
Other suggestions included:
Roy Bradbury pointed out that a new UK Transplant leaflet was available which gave guidelines on religious beliefs and organ donation. Mick Hill said NKF were working on addressing the shortage of organs all the time.
Mr White (Southport Kidney Fund) asked for advice on how to change their group’s name to Kidney Patients Association. It was explained the group would have to obtain approval from the Charity Commission and follow the procedures laid down by them. It may take a little while to achieve the change.
Ajodha Ramnarine asked if the NKF had developed a plan of action for supporting ethnic minority patients. He said he believed that NKF should have a national Kidney Day to promote the value of kidney care.
Simon Jenkins (NWKPA) said more attention should be given to people within religious groups who are not in favour of transplantation because organ donation is more difficult to accept for people who have reservations about brain stem death. There are also some difficulties on desecration after death but a focus should be made on the positive laws which say it is good to save someone’s life as this would be a more forceful line than focusing on desecration. Such positive laws should be looked for in every religion and these should be concentrated on.
Tim Statham announced the introduction of ‘Betsie’ on the NKF website. This is a new application built by the BBC for the benefit of visually impaired web site visitors to assist them view text more easily.
Sharon Orpen (Wordsley) congratulated the Conference Committee on a successful conference. She said this had been the best conference for a long time. The speakers were first class, but the venue was not as good as Blackpool.
Shirley Ramnarine (St Mary’s) asked why NKF did not make it more attractive for ethnic minority people to attend conference. She said they had been deterred from attending because there was not one session for ethnic minority patients. Trevor Waithe (Royal Free) disagreed that NKF deterred ethnic patients from attending. He said advertising went to all units and was included in Kidney Life. He pointed out that a number of ethnic minority patients from Royal Free KPA had attended. He felt ethnic minority patients were just not interested and the blame should not be put on NKF.
Dorothy Cobb, Charing Cross agreed saying it was easy to complete an application form in Kidney Life
Gary Lloyd pointed out there were 30,000 patients in the UK and only 400 came to the conference. He felt there was just general apathy.
Caroline Jones asked for clarification on the payment of holiday dialysis abroad and whether this could be taken up with the Department of Health. Mick Hill explained it had proved impossible to get the Government to draw up guidelines for payment of holiday dialysis in the UK and this had to be won first. Contact with the DOH had been made several years ago to try to get payment made for dialysis patients wishing to visit relatives in the South East Asia and Caribbean but this would require a change to the law to allow NHS money to be spent outside the UK.
Barbara Morris said the position was not clear cut and payments varied from unit to unit. The E111 can only be used in state run hospitals in EU countries. Tim Statham said the E111 is about to change to a health card and the Executive committee may like to consider launching a campaign for dialysis payment overseas to coincide with the launch of the card.
Bob Dunn pointed out the health card is out for consultation at the moment and this opportunity could be used to pass such comments.
Bob Dunn reported that the Department of Health do not have evidence that holidays are being restricted in any way. A letter will be sent to KPAs within the next week requesting information on what holiday allocation is given at their hospital. He asked KPA Chairmen to respond promptly.
Knud Erben said there were some units which would not accept E111 but he urged KPAs to ask their units to accept E111. Jean Aplin pointed out that one way around this was as in Crete where patients were asked to take their own dialysers to overcome the difference in cost.
Catherine Jones urged NKF to be forceful to fight for dialysis to be paid for all over the world. Mick Hill said NKF were already doing this.
Bob Dunn explained that NKF was trying to get away from the term Holiday Dialysis because people have to travel to other countries for different reasons and holidays are only one aspect. The recommended terminology should be “Temporary Dialysis Away from Home.
Bob Price said it was difficult getting responses from overseas units owing to language difficulties and asked if it would be possible to put a “Request for Dialysis” letter in different languages on the web site which people could download.
Shirley Griffiths (Basildon) asked if NKF could set up an international exchange system on the website between the UK and overseas countries to enable people to exchange dialysis slots.
Mick Hill said this and the Request for Dialysis letter should be investigated.
An explanation about holiday dialysis using a REDY machine was sought and Bob Price explained he had used one a lot, the last time being 3 years ago, but the machine was really for home dialysis patients who had been trained to dialyse themselves and the Redy machine is no longer manufactured.
Chris Roberts expressed disappointment in the Minister’s presentation.
There being no further business the meeting closed at 12.05 pm.
The National Kidney Federation is registered in England and Wales as a Company limited by guarantee (Company No 5272349) and awarded charitable status (Charity Number 1106735). Give as You Earn contributions No. CAF GY511.
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Page created: 7 November 2004
Last updated: 27 February 2011