MARGARET NELSONTyneside Kidney Patients' Association
Registered Charity Number 518767
December 2009 Newsletter.
We have been producing our newsletter is two forms; normal print and large print but both have been in an A4 format. The small size of leaflet stands in RSC Outpatients means our newsletter gets bent over and doesn't look good. So we are producing an A5 booklet version to mail out and have on display. Those getting the newsletter by e-mail will continue to get it in the A4 format. Simon Lloyd
MARGARET NELSON
We want to pay tribute to Margaret Nelson who died the day after her husband John on 13th November, aged 57.
Margaret had been on haemo-dialysis for many years after losing a transplant. She never let dialysis get her down but did a tremendous amount to support others.
Margaret served on our committee as vice chairman. She was particularly involved in helping us through the problems we faced in 2006. Then in serving as one of our committee members helping to keep us right.
Margaret was very involved in fund raising with the hospital charity stall and in other fund-raising events. She always had an eye for a bargain and brought all sorts of different items to help us raise funds.
Margaret had been a member of the Samaritans for a time. She used her telephone skills to support people as part of our telephone Helpline team. She was very friendly and gave a lot of support to those she met on both Ward 22 and Ward 31 in particular. She also represented patients in discussions with the North East Ambulance Service seeking to improve the service.
Margaret shared the editorship of the Newsletter with Joan and wrote some very descriptive articles. She had a particular way with words. Not only that but she seemed to find humorous articles to help lighten up things.
Margaret didn't just support kidney patients. She was also very involved in Westoe Road Baptist Church in South Shields where she served as a deacon and was very active in visiting people.
Margaret leaves a big hole in the work of our Association but very, very warm memories of a generous person. Simon LloydHOME HAEMODIALYSIS
The Home Haemodialysis Sister Maria Love gave us a very detailed talk on home haemo. She had put together a very detailed presentation of how patients are prepared, trained and helped in doing dialysis at home.
Preparation normally involves working with both the patient and their carer, though there are some patients who dialyse alone without support very successfully.
Training is done in one of the individual bays in Ward 32.
The patient's home is assessed by the hospital estates department and either modified if suitable or a Portacabin is supplied for dialysis. Funding is available for the adaptation work. This currently includes fitting a water purification unit and the same sort of dialysis machine as is used in the renal unit.
Maria had comments from one of the couples on home haemo. The husband had been on hospital dialysis and had transport problems so his wife often picked him up to take him back home.
The husband had found that home haemo was:
His wife as carer commented that:
Maria also told us about the new American Nx dialysis machine that is being trialled at Leicester. This uses a disposable cartridge and is much smaller and simpler to use. It is more expensive at the moment but could revolutionise home haemo.
There is a two-page article in the current edition of Kidney Life about both the Nx and new Quanta machines.
MEETING WITH RENAL STAFF
We meet senior renal staff quarterly. Items discussed included:
IMPROVING TRANSPORT FOR HAEMODIALYSIS PATIENTS.
A joint meeting was held between North East Ambulance Service Staff (NEAS), John Tapson and Matron Julia Harding. Unfortunately our representatives couldn't attend.
There are very serious concerns about the poor service. The NEAS are going to consider three options:
MEDICATION SHORTAGES
There are major supply problems in getting repeat prescriptions for expensive pills. These include the immunosuppressants such as cyclosporin, tacrolimus and mycophenalate as well as EPO.
This shortage is the result of the devaluation of the pound. This has made our drugs cheaper than those produced in Europe. So our pharmaceutical firms are exporting the expensive drugs and there is a shortage. This totally reverses the previous situation when European drugs were cheaper, we imported many and there was a good supply.
The effect of this shortage is that pharmacists find it difficult to get drugs wanted on repeat prescriptions, as wholesalers no longer have them in stock. They have to order them direct from the manufacturer and this takes longer. Pharmacists are advising that if you are taking any of these expensive drugs you need to order them a week in advance. This will make sure you don’t run out.
Some GP receptionists do not allow patients to order repeat prescriptions more than two days in advance. If that happens explain the problem. If the receptionist won’t let you make a repeat prescription you can seek help from a pharmacist, your GP or your renal consultant.
I’m sure you don’t need reminding it is dangerous to be without your immunosuppressants.PILL DISPENSERS
Eleven years ago I got home after my transplant with a great big bag of pills. Most of these were in white boxes. So I sorted them out by labelling them morning, noon and night. Fine while I was at home but I lead an active life and don’t want to carry boxes of pills around. I bought one of the Danish Medios pill dispensers. It cast about £10 and is now somewhat battered and could do with replacing.
There is a large variety of pill dispensers so how do you pick the one that suits you best. You need to consider:
I think the Medios dispensers are the best I’ve seen. There are two sizes:
The small version costs £10-59. It has 7 pill cases. These are long with a sliding cover and come with 3 movable dividers. They are in a blue plastic case with clear plastic forming the pouch to hold the pills.
The big version costing about £16 which has 8 pill containers. Each day’s case has 4 fixed divisions and a sliding cover.
The pill boxes are very clearly labelled with times on the side and day on the sliding cover. It's easy to use as you slide back the lid to open a compartment and tip out the pills.
Simon
Lloyd
QUALITY
STANDARDS?
What are the standards of renal care we should expect to get? How long should we have to wait for transport to take someone home? Just two of the questions Pam Yanez will be answering in our meeting on 12th January in Room 137 in our meeting starting at 7.00 p.m. So why not come along and find out?
SANTAS
WANTED
Santas,fairies or others are wanted to help us go round the renal wards and give out a card, cracker and sweets as well as lots of good cheer. We are hoping to expand our visits if we can get enough volunteers.
What we are hoping to do is to go round the three haemodialysis shifts on Tuesday 22nd December and Wednesday 23rd, but also Ward 4A and 32 on the Wednesday evening.
We would like volunteers for about an hour on
If we cannot staff all of these we will concentrate on the Wednesday 7.00 p.m.
Please contact Simon Lloyd to let us know if you can help. We will meet in the atrium.
Please
let Simon Lloyd know if you can come for one or more of these
sessions.
DOCTORS V
PATIENTS DARTS COMPETITION
Wanted - Darts players to form 6 teams of 3 to take on the doctors. Tuesday 23rd February. Venue to be announced. Come and help us beat the doctors.
If you'd like to play please contact Dave Lee
SANTA'S 10 REASONS FOR A RISE
10.
The hours, the weather, the trend toward smaller chimneys.
9.
Nike won't give him a lucrative side-contract.
8.
Reindeer and elves have unionised, driving up his cost.
7.
New tax on flying sleighs.
6. Insurance for flying a
sleigh has tripled over the past two years.
5. Needs
extra cash to cover off-season gambling losses.
4.
Air traffic controllers demanding higher kickbacks.
3.
Cost of living increase at the North Pole.
2.
Children don't leave as many cookies as they used to.
1.
The Mrs. told him to.
MARY WOODS
Mary
Woods, who was one of the renal social workers, has recently retired.
Mary has been involved with our Association since she joined the
committee in 2002.
She had a wealth of experience, which she used in
helping kidney patients. Her quietly spoken words have helped many
people and we are all going to miss her helpful care.
DR NICK TORPEY
Nick Torpey will be taking up a new consultant's post in Addenbrooks Hospital near Cambridge at the beginning of February.
Nick came to us from Guys Hospital and has become a very well liked and appreciated member of the renal team while he has been at the Freeman. While at the Freeman he has had a specialist interest in immunosuppression that has played an important part in transplantation.
Nick also has a very clear way of explaining things both on a one-to-one basis and in technical presentations.
We wish him all the best for his future.Why
is getting Christmas presents for your kids just like a day at the
office?
You do all the work and the fat guy in the
suit gets all the credit.
SWINE FLU VACCINATIONS
The NKF and other health agencies are advising that all of us with a transplant are at risk because of our immune systems being suppressed to prevent rejection. So we should be vaccinated. Not only us but our partners or carers as well.
The vaccine comes in vials that make up 10 doses. These need using immediately and so GPs are holding group vaccination clinics.
If you are on immunosuppression you will need a second jab three weeks later.
TRANSPLANT
VOLLEYBALL COMPETITION 2009.
On the 21st November the annual transplant volleyball competition took place in Loughbourgh. There were 8 team entries, Due to injury and unavailability Newcastle did not take a full team, but David Lee & Dawn Fenton did compete, joining up with a partial team from Bristol. Graeme Appleby and Martin Graham also travelled down but Graeme was recovering from a knee injury and Martin was sporting a plaster cast after a wrist injury playing volleyball, which meant that they were unable to play.
The competition was friendly and competitive as usual. We played 7 games but didn’t manage to win any, but we had good matches especially against the top ranked teams, Cambridge and Wythenshaw, which both went to the wire.
A Gala Evening was held at the Hotel we stayed at, and included a 3 course meal which was served to a very high standard and tasted just as good. After the meal the medal presentations took place: 1st Cambridge: 2nd Wythenshaw & 3rd Northern Ireland, we all roared with pride as taking part is a great honour and achievement. A band called the Roosters provided the entertainment for the evening and played very well, with a wide variety of music to suit all tastes, and everyone was up on dance floor having a great time.
Overall the competition was a great success, meeting up with old friends and making new ones.
The plan next year is for Newcastle to host it so if anyone out there is interested in any aspect, playing, organising or knows of any venue for competition or accommodation or would like to be involved in any capacity please get in touch with Joyce Gill or Dave Lee. Dawn Fenton
HELP PLEASE WITH CHEQUES
We have had some problems with donations made out to "Kidney Patient Association" and having to return them to get the word "Tyneside" added. Could you please help us by making sure cheques are made payable to either TKPA or Tyneside Kidney Patients Association. Many thanks for all your support.
On Christmas morning a woman told her husband, “I just dreamed that you gave me a beautiful diamond necklace.
What do you think it means?”
“You’ll know tonight,” he said.
That evening just before opening presents, the husband came home with a small package and gave it to his wife.
Delighted, she opened it only to find a book entitled “The Meaning of Dreams."
ACKNOWLEDGEMENTS
Many, many thanks to those who have given us generous donations in memory of:
George Edward Adamson.
Mrs Sandra (Sandy) Musgrave.
Margaret Nelson.We
also want to thank those who have given us very generous donations of
items for the stall and raffle prizes.