Tyneside Kidney Patients' Association

Registered Charity Number 518767

June 2010 Newsletter.

EDITORIAL
If you were a financial manager for our hospital Trust how would you use very limited funds to support patients with special needs?

Imagine that you are faced with a stark choice. You have funds to either pay for very expensive medication to give a few terminally-ill cancer patients extra months to live. Or you could use the same money to fund dialysis sessions away from the Freeman for haemodialysis patients. You can’t fund both.

Who should get the funds available? Cancer patients so they have a few more months to live? Or should haemodialysis patients with much greater life expectancy get funding to dialyse on holiday, or away for family reasons, or for educational purposes, or having to travel as part of their job?

  There is no easy answer.              Simon Lloyd 

With money you can buy a house but not a home. (Chinese proverb) 

KATY JONES
My name is Katrin Jones (Katy) and I joined the team at Freeman on 8 March 2010.

I am not a new face at the Freeman Hospital as I first worked on Ward 4 as a junior doctor in 1998.  My first  experience of Renal Medicine was so
impressive that I was inspired to pursue a career in it and, once I’d got my exams, I studied for a PhD at the Centre for Life under the supervision of Professor Goodship.  

I investigated the genetics of reflux disease and renal scarring between 1999 and 2002.  My Specialist Registrar post (2002 – 2008) was also in the Northern Region and I worked here and at Carlisle, Sunderland and Middlesbrough during my training.

In 2008 I started my Renal Consultant career in Middlesbrough and enjoyed working there.  I was shown the ‘ropes’ and supported through the challenges of being a new consultant by my older and wiser colleagues!  I fell in love with Newcastle as a medical student and was delighted when I was appointed to the post of Consultant Nephrologist with a special interest in transplantation last year.

In my spare time I enjoy walking and mountain biking (badly!), singing in a choir, cinema, eating and seeing friends. I love to spend time with my family, especially my little nephews!

 It’s early days for me back at the Freeman but I am managing to find my way around the smart and airy, new Renal Services Centre and am relieved to find lots of familiar and friendly faces are still here (both patients and staff).  I am also working on the Renal Transplant Ward (6A) and am watching the Transplant Institute grow by the day from my office window!

 I feel fortunate to have joined an organised, dynamic and enthusiastic team which is driving developments in renal care and look forward to playing an active role in these throughout my future career.

      With money you can buy a bed but not sleep.

DIALYSIS AWAY FROM BASE (DAFB)

There have been a lot of concerns and discussion since the number of sessions of haemodialysis patients can have in other units (DAFB) has been capped at 6 sessions/year. These concerns are shared by staff and the patients affected. The following facts have emerged in discussions:

1. The cap has been set by renal staff, not PCT commissioners, for funding reasons. The PCT will only fund dialysis under the Department of Health 2007 guidelines. The Trust has supported DAFB for the past two years on the understanding that the report being prepared by the Renal Tsar, with the help of the NKF, would change the policy. It has not been the case so far and staff have had to review this arrangement.
2. The year is the financial one i.e. April to March, not the calendar one.
3. In the last year nearly 2½ times as many patients had one or more DAFB sessions. Of these one fifth had more than 6 sessions. It appears as if DAFB might be increasing annually.
4. The charges for each dialysis session in NHS units vary from nothing in Salford to £380 in the most expensive unit. Consequently Newcastle, as one of the lowest cost units, has had to pay out more than has come in from patients doing DAFB in our wards.
5. The Newcastle Hospitals Trust has to make major savings and it is possible we could lose funding for any DAFB sessions. This should improve once the fixed tariff comes in. The Trust is keen to help patients have holidays where possible.
6. Funding for overseas DAFB sessions is only available for countries with a reciprocal agreement. In other countries such as India and the States patients will have to pay for dialysis sessions themselves. This is clearly laid down in the 2007 guidelines.

DAFB was discussed at the recent regional renal review meeting without reaching any satisfactory conclusions. Other renal units have not been affected by high charges for DAFB but they are concerned they could also be affected in the future.

The Renal Tsar Donal O'Donaghue is chairing a committee on DAFB charges. One of the NKF national advocates, Bob Dunne, is on the committee and he has provided further information. This year the recommended charge for a DAFB session is £144. This will become mandatory in every unit next year.

Why are charges in some units so high? Because they are adding on costs for medication such as EPO, tests and administration fees. At the moment there is no set level for these. The renal Tsar was at the Freeman recently and staff asked him about these extra charges and got no clear guidance.

 Can we do anything about the extra charges? The best avenue open to us is through the NKF, who have an influence on behalf of all kidney patient associations. We are considering putting forward a motion for the NKF council meeting at the October Conference to raise the issue and propose that the extra charges should be standardised. Will you support this?   Simon Lloyd/Pam Yanez 

With money you can buy a book, but not knowledge.

HOME DIALYSIS TREATMENTS- UTILITIES PAYMENTS

A review of the reimbursement paid to patients for utilities used during dialysis treatments at home is being undertaken. The purpose is to ensure that the patient receives reimbursement that is fair and relates to expenditure incurred during the course of their treatment.

  Home haemodialysis

A new system has been put into place that reimburses patients on a monthly basis, directly into a bank account wherever possible. Costs incurred for electricity and water (for patients on a water meter) have been calculated and patients will be paid a set amount per dialysis session undertaken. There is no requirement for any utilities bills to be submitted to the hospital. The payment of the quarterly rental for a telephone has been withdrawn as this payment started many years ago when many patients had a telephone installed purely for the purpose of emergency contact to the renal unit.

  Peritoneal dialysis

A review of reimbursement to patients on CAPD, APD or AAPD is under way and in the coming weeks patients will be informed of the new rates. Reimbursement will also be made on a monthly basis by number of days dialysis has been undertaken. Further information will be sent to all patients by the PD team.

  Pam Yanez, Directorate Manager 

HARROGATE SPRING FLOWER SHOW

Thirty of us had a really great day at the Harrogate Spring Flower Show. This year it was a lovely warm spring day that brought out the crowds. It was a real tonic after a very long wet winter to see such a feast of beautiful flowers.

Where else can you find chrysanthemums, carnations and other plants flowering out of season? They gave lovely displays as well as showing what the young plants for sale will look like later in the season.

Getting between the covered display areas was slow as there place was crowded but there were displays of spring flowers, alpines, bonsai trees and many other stands.  In addition a whole hall full of flower arrangements ranging from very small to very large.

The display on the left is part of one labelled “A Fresh Twist.” The varieties of plants and materials used in the displays were enormous.

The show also had a lot of commercial stands selling just about everything from garden sheds to jewellery and craft items as well as a wide range of plants. Several stands were selling folding trolleys including pink ones being sold to support breast cancer.

We all got back on the bus on time having enjoyed a really good day.     Simon Lloyd 

QUALITY IN RENAL CARE

Pam Yanez gave us a very good talk on the quality standards being used to measure the quality of renal care. She also explained why a limit has been placed on haemodialysis sessions away from the Freeman. She would like to enable to do more for patients but are concerned we could lose funding for these. 

  With money you can buy a position but not respect.

RENAL REVIEW MEETING

The renal review meeting between the PCT and staff from Middlesborough, Sunderland and Newcastle was held at the James Cook Hospital. Agenda items included:

• problems over funding for Dialysis Away From Base (DAFB) with concerns over extra charges above the dialysis costs.
• Progress over the new PCT centre in Morpeth. It is expected this will open, including the new satellite dialysis unit, early in 2012

PKD MEETING REPORT-Saturday 17^th April

On Saturday 17^th April 2010 I attended the PKD (Polycystic Kidney Disease) seminar at the Freeman Hospital. The day was well attended by between 80 to 100 people some of whom had travelled from as far as Leeds. The majority of the people who attended appeared to be have been diagnosed with PKD or had a family member who had been diagnosed. There were not many people like myself who has been on dialysis and has had a transplant.

The first talk from Dr John Sayer was a general overview of PKD and a guide to patients with the disease.  Very informative for people who did not know much about PKD. In the TKPA we are very lucky that we have several doctors speaking at our meetings about topics that were covered during the day.

The next speaker was Professor Ruth Goodship, from the genetics lab at Newcastle Centre for Life. She talked about the genetics and DNA profiles of the PKD gene. The development of science in this field is complex but interesting.

The next speaker was Martin Wilkinson whose wife spoke after lunch. Martin spoke about coping with long term illness and staying positive even though you could go through several ups and downs during the different stages of illness. He gave a very inspiring talk and had worked in many fields doing counselling work.

Dr Larissa Kerecuk from the paediatric unit at the RVI then gave an insight into children with PKD and how they are treated at the children’s unit. There were a lot of questions for Larissa from family members who wanted more information about at what age children can be diagnosed with PKD and if they did not have it at a young age what age would they be free of it not developing.

 We  broke for lunch when there was a chance  to speak to other people and hear their stories, which I found interesting as I had gone through all of the things they might have to face in the future. I was able to give people the positives about what they could encounter.

After lunch there was a short talk from Tess Harris about the work of the charity and how people could get involved. This was followed by a patient’s story by Justina Wilkinson who explained her journey from diagnosis, PD dialysis, transplant, transplant failure and back onto PD dialysis.  Justina offered to show people a PD bag exchange during the lunch break.

There was an option of two workshops, one on practical lifestyle tips and the other on surgical treatments for Liver and Kidney cysts. The latter which was given by Prof Derek Manas a top surgeon from the Freeman Hospital.

Prof Manas started by showing slides of actual kidneys and livers with PKD. He then went on to describe the pros and cons of surgery and at what stage it would be necessary. He was very down to earth and a lot of people had questions at the end of his presentation.

The final speaker was Dr Roslyn Simms who works between the centre for life and the hospital. She has funding to carry out research into kidney disease and is currently using zebra fish for her research.

Dr Simms identified about 14 current trials going on around the world into PKD, in this country, America, China and Italy. Most of these trials should be completed within the next couple of years. The results will be collated centrally and published and could lead to treatments preventing the development of cysts avoiding renal failure. The next 5 years should be an interesting time in research into PKD and at some point we hope there may be some sort of treatments.

On the whole this was a very well organised and supported day.   David Errington  

WALKER SHOW 22^nd MAY

In the marquee our stand was among the tom bola stands. Joan Longstaff was very grateful for all the help she got from Martin Graham, Alan Bond, Isobel, Cassie and Holly Stubbington and Mary Bullock.

There seemed to be fewer people at the show and £107 was raised on the day. 

With money you can buy a house but not a home.

PROGRAMME – FUN EVENTS

  FUN DAY AT PADDY FREEMANS – Saturday 26^th June

  SPONSORED WALK

Will you come and join in the Sponsored Walk that Alan Bond is organising on Saturday 26^th June in Paddy Freeman's from 10.00 – 12.00p.m.? Help us make this an enjoyable event that will raise as much as possible.

We can't use the Dene as there is so much development work going on. The walk will be on the paths round the playing fields and open area and is suitable for wheelchairs. 

  FUN AFTERNOON -Saturday 26^th June

Come and join us for a relaxed afternoon at Paddy Freeman's from 1.00 p.m. near the car park in Paddy Freeman's

Unfortunately the doctors can't raise a team to take us on at rounders (should we claim the Elizabeth Dickson trophy be default?) but we are planning some fun events as well as time to relax, enjoy the sun(If it shines). We will have our gazebo there so bring some food to cook on a barbecue and simply relax. You will also need to bring a chair.

  PARKING

We have arranged free parking for those doing the walk in the Multi-Store car park providing you display the permit on the last page. This will allow you to park free in Level 2 or above. 

 DOCTORS V PATIENTS CRICKET MATCH -Tuesday 6^th July 6.00 p.m.

The annual friendly challenge match between doctors and patients will be held at the Blue Flame Club starting at 6.00 p.m.

 Come and either play or support this event and enjoy the fun of this limited over game. It will be followed by a buffet and raffle. If you can play or want to learn come and join in.

TRANSPLANT GAMES -Bath 19^th to 22^nd August

Newcastle Transplant Games Team will be competing in a wide range of different events. If this is like the games organised there in 2006 these should be very well run.

The TKPA has given a donation of £200 to help the team with expenses. In doing so we wish those competing every success and hope they bring back a lot of medals and some cups.

  With money you can buy a clock but not time.

STANDS AT EVENTS

We are planning to hold stands at several events and so could you please help with one or more of them?

SOUTH SHIELDS FESTIVAL - Saturday 3^rd July

The South Shields Festival is a really good fun event. We have a stand where we will put up our gazebo and run a tom bola as well as other fund-raising events. So can you come and help us run it and also see how many potential organ donors we can enrol. We are hoping to be there before 10.00 a.m. so we are ready for the start of the event at 11.00 a.m. This will finish about 4.00 p.m.

TRANSPLANT WEEK, 5^th-11^th July

We have arranged to put up two stands promoting organ donation for the week. One will be near the main entrance and the other will be in the atrium of the Cancer/Renal Unit opposite W.H. Smiths. Each stand will have boards with adverts for organ donation and leaflets for those who want to become organ donors.

We don't normally man these stands but if you would like to volunteer to do so and encourage people to become donors please let me know so we can arrange details. Simon Lloyd 

WESTOE VILLAGE FETE – Saturday 10^th July

We are having a stand at this show for the first time. This is   known as a very good show and we would appreciate help in running it. If you can help please contact Joan Longstaff on the Friday stalls.
 

MEETINGS – Education Centre Room 137 Tuesdays

  Tuesday 13^th July, 7.00 p.m. General meeting - Peritoneal Dialysis probably being take by Mary Fitzpatrick 

  Tuesday 10^th August, 7.00 p.m. Committee Meeting – members only 

  Tuesday 14^th September Annual General Meeting – we are hoping to arrange a speaker on Skin Care 

  Our meetings are normally held on the second Tuesday of the month in the Education Centre of the Freeman Hospital. Normally they are held in the lounge rooms 137/138. Everyone is welcome t our general meetings with a speaker. Committee meetings are for members only. 

CHRISTMAS DINNER -Tuesday 7^th December

Last year we had our Christmas Dinner just before Christmas and a lot of people couldn't come because of other social events being organised in the very busy period. We have decided to have our dinner early in December on Tuesday 7^th so more can come.

Please put this date in our diary and come and enjoy a really good evening 

RESEARCH: A NEW TECHNIQUE FOR ASSESSING KIDNEY TRANSPLANT BLOOD FLOW.

As those of you who have had a kidney transplant will know the time immediately after the surgery is a crucial period. Part of the assessment to see how the kidney is working is to check the blood supply to the new kidney. This is currently done using a nuclear medicine examination in the medical physics department.

Also as part of the routine aftercare an ultrasound is performed to look for other complications.

We propose to try and combine these tests with a dye enhanced ultrasound scan. This involves a small injection of a marker which can be followed through the kidney by the ultrasound scan. This will give all the information provided by the nuclear medicine scan but is quicker, safer, cheaper, more portable and likely more accurate.

We propose that any kidney transplant patient over the next year or so undergo both of these tests so that we can compare the results and see if we should be using dye enhanced ultrasound instead of nuclear medicine after surgery. This would only add approximately 5 minutes to the ultrasound scan which is already being performed and if the patient is poorly we are mobile enough to visit them on the ward.

There has been some research suggesting that the way the marker passes through the kidney can also provide information as to the chances of the kidney encountering problems further down the line, such as acute rejection. We would like to assess this possibility as part of the research.

As current and past users of this service, I would be interested to hear if you have any thoughts or comments about this research or any thoughts about your own care in this area. Also, if you would like a more detailed explanation of the research please do not hesitate to contact me.

You can contact me directly at ben.stenberg@nuth.nhs.uk or telephone 0191 2336161 extension 26552. Or if you prefer to pass your comments on the Tyneside Kidney patient association, they can forward them to me. 

WHO CAN BE A MEMBER?

A kidney patient on regular 6-monthly checks has asked, “Who can be a member?” What's the position?

Our Association exists to support patients with Chronic Kidney Disease (CKD). That is patients who cannot recover after treatment.

We exist to support all adult CKD patients. This includes patients with poor renal function, those on dialysis or with a transplant. We also support patients who do not want dialysis and are on what is called conservative care.

Our membership is open to other interested people. This includes carers, friends and family. If you are a carer please note our focus is on supporting kidney patients.  There are other very good groups who support carers much better than we can.

We have been asked if we can support young kidney patients. We don't have the necessary skills and qualifications so only support adults over 18. If younger patients want to get involved then they can in the care of a responsible adult.

Membership application forms are available from Renal Social Workers, leaflet stands in renal outpatients and wards or direct from the secretary Simon Lloyd

  With money you can buy a clock but not time.

COCKERMOUTH TRAVELODGE

We have been given the following tip if you are planning a break in the Lake District and dialysing at Lakeland Dialysis. The Travelodge is currently charging £19 / night for a room and is only a ten minute walk away from Lakeland Dialysis 

ACKNOWLEDGEMENTS

We are very grateful to all those who have give us books and gifts to sell on the stall. We also want to thank:

• The friends and families who have given us donations in memory of: Joyce Alison Fitzgerald, Violet Milburn, and Doreen Lough
• Hopley Pharmacy in Ponteland, Station News in Gosforth and W.H. Smiths in the Freeman for collecting money in collecting tins for us.
• The local branch of Unite for their donation

This year the annual conference is being held at a new venue, Hinkley Island Hotel, Leicestershire. There is a very good programme planned and we would like to take a group to it and run a stall there about our Association and to sell wristbands.

If you would like to come we are planning to hire a car and drive down. Or you can travel separately and we will pay for your travel cost. We also help pay for accommodation.

If you would like to go please let anyone on the committee know. 

EMERGENCY WRISTBANDS

Wear a wristband specially designed for kidney patients so emergency services are made aware of your special needs.

We have had these specially made for us. There two sizes, 22 cm and 18cm. They are available from the Friday stall @£1 or by post @£1-50. Order forms are available in the leaflet holders of all he renal wards and in Renal Outpatients. 

COMMITTEE ELECTIONS

We elect the whole committee every year. There are 4 honorary posts: chairman, vice chairman, secretary and treasurer. In addition there are 4 posts for committee members. We need nominations for each post. So will you please help by completing the nomination form at the end of this newsletter? Nominations need to reach the secretary by Saturday 31^st July.

  Please note the following:

• Nominations must only be made with the approval and signature of the person being nominated.
• A person can serve in a committee post for three years.
• The list of candidates will be sent out with the August newsletter as we have to give 4 weeks notice before the A.G.M. Please print one off if you want to make a nomination.

 Nomination forms should be sent by 31^st July to Simon Lloyd, Carr House Cottages, Berwick Hill Road, Seaton Burn, NE13 6BX 

CONTRIBUTIONS PLEASE

We publish our newsletters every two months. If you would like to contribute information, renal friendly recipes, jokes (clean please), poems, puzzles or observations please let a committee member have them by the end of July 

  Website: www.tynesidekpa.org.uk

  National Kidney Federation: www.kidney.org.uk

  Telephone Helpline : (01661) 871 399 

FREE PARKING FOR MEETINGS

We have arranged for those coming to meetings to park free in Level 2 or above in the Multi-Storey car park providing a permit is displayed on the dash board.