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MINUTES OF THE 33RD COUNCIL MEETING MARCH 2011

MINUTES OF THE 33RD COUNCIL MEETING HELD IN THE GOVERNOR’S HALL, ST THOMAS’ HOSPITAL, LONDON, ON SATURDAY 26th MARCH 2011

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 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 Register

A quorum of 30% of official representatives was met.

Marion Higgins welcomed everyone to the meeting.

572 APOLOGIES FOR ABSENCE

Apologies were received from David Macdonald NKF Treasurer, Vivienne Dodds Walsgrave KPA, St George’s KPA, David Myers, Ewen Maclean Scottish Kidney Federation, Ray Mackay, Frank Howarth NKF President, Keith Pennington Hope Hospital KPA, Jean Aplin Exeter & District KPA, Peter Spray Royal London KPA, Robert Dunn Regional Advocacy Officer, Deborah Duval KL Editor and Simon Lloyd Tyneside KPA.

573 MINUTES OF COUNCIL MEETING HELD ON SATURDAY 10th OCTOBER 2010

It was proposed by Judith Sideway Dudley KPA seconded by Sharman Maxwell West London KPA and agreed unanimously the minutes of the meeting held on 10th October 2010 be approved and signed by the Chairman as a true record.

574 MATTERS ARISING

There were no matters arising.

575 NKF ROADSHOW 2011 – Hilton Hotel, 7-9th October.

Barbara Morris Conference Chairman reported the theme of the Roadshow would be caring and sharing and will include stem cell progress, genetics, home dialysis patient empowerment, multi swap transplants, living well and a presentation on integrative health. A little light entertainment was included named Strictly NKF. There would be more for carers and as the title suggests sharing of information will be prominent. All modalities would be covered from dialysis to transplantation. She hoped more people would stay to enjoy the Sunday morning workshops which would include home therapies, home dialysis machine progress and a carers forum. KPA’s were asked to assist patients wishing to attend and encourage Peritoneal (PD) patients to go. Supplies could be forwarded to the hotel and a special room was set aside for day visitors, the possibility of a bag warmer would be looked in to. The price of the Roadshow would be similar to that of 2010 and an early bird price would again be offered. Booking by credit/debit card would be available for bookings of one or two people. Sam Wood Young @ NKF had strove to improve attendance of young people at the Roadshow and the programme had set aside time for them to meet as a group. Barbara Morris asked all KPA’s to continue her work and encourage young people to go. Timothy Statham stated he had a number of people who had contacted him with a view to continuing Sam’s role which would be looked into at the appropriate time.

In reply to a question raised by Robert Price Six Counties KPA Barbara Morris confirmed 2012 Roadshow would be held at Hinckley Island Hotel, Leicestershire.

576 WORLD KIDNEY DAY (WKD)

NKF had attended the Parliamentary reception in the House of Commons on 10th March 2011, which had been very well attended. Nick Palmer National Advocacy Officer stated Kidney Alliance had organised the day which had been extremely good. It would help raise awareness throughout the year not just for one day. The Parliamentary reception had been held the day before WKD in order to increase media attention on a national level, but this had not come to fruition. Locally WKD sought to bring attention to dialysis and transplantation and to build on this in the future. NKF would continue to work together with KPA’s throughout the year for better facilities and services for patients. Timothy Statham requested KPA reports and photographs should be forwarded to NKF HQ to be included in the next edition of Kidney Life.

577 ADVOCACY

The Chairman introduced Nicholas Palmer to the meeting who would be taking up the role as Regional Advocacy Officer following Robert Dunn’s retirement on 31st March 2011. Unfortunately, Robert could not be at the meeting due to family illness.

She continued by stating he had been very sorry not to be able to be at the meeting to say goodbye to everyone, but his place had to be with his wife who was currently very ill.

Bob had been with the National Kidney Federation (NKF) for 11 years. He had joined after retiring from an extremely busy and successful business career which took him around the world.

Bob knows all about kidney failure, having donated one of his own kidneys to his wife. We were extremely lucky therefore when the post of National Advocacy Officer arose and Bob was there to take on that role. Initially, he worked alone, but in later years has been supported by two regional officers.

Bob was never a person to stick to the prescribed hours and worked non-stop to develop his role. He worked tirelessly with the Department of Health, Government Ministers, NICE – to name but a few – and there is no corner of the Renal NHS that Bob has not explored. He has fought the NKF’s corner and that of the patient so strongly, bringing the NKF to the forefront of attention. His work with the Organ Donation Task Force (ODTF) is a testament to his achievements and the respect for Bob by these organisations cannot be underestimated. His work has quite rightly been recognised through his much deserved award of an MBE.

I know that Bob is happy to leave knowing that Nick Palmer will continue to develop the Advocacy services in a way he will be proud of.

If we all had a glass in our hands I would ask you to raise them, but without this – please join me in wishing Bob a long and happy retirement.

Timothy Statham stated he had found it most pleasing to work with Bob. He had interviewed and appointed him and always regarded him as his number two for whole of the 11 years he had been with the NKF. A superb man – and it speaks volumes for him when the Department of Health nominated him for the MBE, someone from an outside organisation. We are very sorry he is not here today.

Nick Palmer then gave a report to the meeting beginning by explaining how he had become a kidney patient.

The aim of the report is to illustrate work undertaken and progress made since the beginning of 2011 and relates specifically to his role as National Advocacy Officer and the wider strategic issues affecting advocacy across the regions.

He stated he was coming to the end of his first six months in the role and with the guidance of Bob had learnt a great deal. He stated he would continue to develop a good working relationship with his Advocacy colleagues who had been on hand to provide advice and information promptly and professionally. The team will continue to forge ahead helping the most vulnerable patients, while working closely with our NHS partners as the commissioning landscape rolls out.

Industry partners had also extended their support providing him with insightful knowledge that comes from many years in the business. Over the remainder of the year continued support, guidance and friendship will be vital as we face the challenges of a new era of the National Health Service (NHS).

Work to date had included meetings with Specialised Health Care Alliance (SHCA), commissioners, NHSBT patient groups and work on the salt/potassium problem. Consultations have taken place with a multitude of organisation including NICE and British Transplant Services and the Renal Association. Advocacy calls from patients have increased since the beginning of the year and are regularly passed to him via the Helpline.

The role of Advocacy will be explained in an article in Kidney Life and in Guys KPA magazine and he would continue to work closely with all KPA’s.

Meetings will continue with the Department of Health (DH) and one particular area of concern relating to temporary away from base dialysis will be raised. It is an unacceptable position to find patients could be expected to make up the shortfall for their holiday. Non mandatory home haemodialysis tariff will also need to be kept to the fore.

Futuristically, Advocacy and NKF will need to attain firm knowledge and understanding of the new health reforms planned by the Government and in particular regard to the GP Consortia.

Advocacy is also keen on working towards greater representation from the Black & Minority Ethnic (BME) groups to ensure the voice of all kidney patients is heard and represented.

He thanked Bob for all his efforts in making his early life in the NKF as smooth as possible, and felt everyone would wish him a happy retirement! The hard work will continue to meet future challenges head on.

578 OPEN FORUM

Sharman Maxwell West London KPA – stated they had several Haemodialysis (HD) patients without a fistula, and as the charge is being reduced this is going to be a big problem.

Timothy Statham NKF stated he was sorry to hear so many necklines were being created and so few fistulas. As the renal community know a fistula is by far a better means of access. The reason for the change in tariff made by the DH is to force hospitals to create more fistulas.

Marion Higgins Northamptonshire KPA stated that as a member of the Renal Audit Board on Vascular Access, this is a big concern. A fistula is proven to give better outcomes for patients. In some cases there is no alternative to a neckline but wherever possible a fistula is best access. Survey results will be available shortly and will be looked at again.

Timothy Statham NKF stated in order for a fistula to be created there had to be planning, operating time, theatre availability. Most hospitals already do this, but there is an option of not to bother with any of it and just take the patient into a room and do a neckline – a quick fix. But the outcomes should be looked at - there is no comparison between a neckline and fistula and it is the patient’s right not to be pressured into a neckline if there is any possibility of gaining access via a fistula.

North Staffs KPA – Stated the satellite unit had been taken over by Fresenius, Stafford had also been privatised and Crewe had been earmarked for the same. Had any other KPA’s seen this amount of privatisation?

Marion Higgins Northamptonshire KPA stated Northampton had been a Euromedic unit but was now being taken over by Fresenius.

James Warham Barts KPA – stated his experience of this had not been pleasant. He had been told he would be moved the following day for four weeks which had extended to 10. Treatment was lacking – temperatures not taken. His GP had taken action on his behalf.

Claire Abbott North Staffs KPA – stated the biggest worry was the staffing issue as Fresenius wanted to bring in their own staff.

Denise Abbot Gloucestershire KPA – stated she had dialysed in a Fresenius unit for nine years. Fresenius first duty is to its shareholders and to make a profit. They do not treat their staff as well as the NHS. There is no early shift due to a lack of staff. There are high numbers of staff from outside the UK – Fresenius has more control over them as they are contracted to work anywhere in the UK

Timothy Statham NKF stated there are a number of companies building dialysis machines and providing dialysis clinics. They are all there to make money and satisfy shareholders, Fresenius are no different to them, but are very large and dominate Europe. They are the most likely supplier to win tenders because of it. This creates a problem relating to choice. Many other companies can offer so much more of the holistic benefits that Fresenius will not offer. If choice is what is needed, patients must get involved at tender stage. Ensure patient representatives are involved in the procedure and who is awarded the contract. It is at this stage car parking and other facilities are considered. Information is available on NKF website.

Denise Abbott Gloucester KPA – Asked how patients may become part of the tendering process.

Marion Higgins Northamptonshire KPA– stated she had good working relationships with the unit and had been invited to attend.

Richard Cook Bristol KPA – stated they had a Patient Forum and were involved in the specifications for new build units. Ensuring there is a good market is the main issue. If choice is restricted and the market dominated this makes people vulnerable. He encouraged everyone to ask questions and get involved in what the hospital is doing.

Robert Price Six Counties KPA – referred to the withdrawal of cheques, and asked if the NKF would be able to process KPA memberships through the credit/debit card facility and a central core facility. Marion Higgins replied this would need to be discussed at a future Executive Committee meeting.

Tracey Sinclair Wessex KPA – asked if KPA’s would take a look at the NKF Facebook and Twitter pages, this is a good way for the renal community to communicate, and in particular young people. NKF would continue to monitor and update Sam Wood’s page on her behalf. Everyone was asked to use the facility.

Marion Higgins Northamptonshire KPA – Informed the meeting that a letter relating to the next Transport report had been issued asking KPA’s if they wished to be included. She thanked all those who had responded, stating KPA’s are needed to look at the audit and compare with the previous results. If it has not improved what is your KPA going to do about?

NHS Kidney Care report on patient stories relating to Home Haemodialysis had been very useful. A huge area of people who had been overlooked was the carer - your partner, your family. It is hoped to produce a booklet of care stories. She asked everyone to make enquiries, to see if people wanted to share their stories. The stories could be sent to the Helpline.

Denise Abbot Gloucestershire KPA gave thanks to the Chairman, Executive and the office staff for their hard work

There being no further business the meeting closed at 12.20 pm.