Kidney Matters

Kidney Matters is the newsletter and Web address for the K.P.A. for all renal patients on C.A.P.D.or haemodialysis, transplant and pre dialysis, who are receiving treatment at the Q.E. or the satellite units.
The newsletter is paid for from the funds that the K.P.A. raise during the year. The purpose of KIDNEY MATTERS is to keep patients and carers informed as to the work of the K.P.A., provide information to patients on different topics, which we hope will be of interest and to provide a link for patients who may feel very isolated due to their condition.
We would welcome your comments and ideas on how we may expand and improve on this and continue to help the 2100 plus patients with renal problems treated at the Q.E.
If anyone would like to contribute an article to the newsletter or the web page. It could be about how you organised a holiday, Ideas on dealing with the condition of renal failure, coping with going back to work, success stories about receiving transplants, and how it changed your life. This would give hope to others who may feel very low at times and that the future looks bleak.
If you send your thoughts to the Editor the address is on the back page of the news letter or on the contacts page, we will include them in future editions.
The Newsletter is posted to all patients once a year when we send out the Annual Raffle tickets. On the other occasions we post it to C.A.P.D. and transplant patients and put copies in each of the dialysis units: Aston, Tipton, Hereford, Kings Norton, Woodgate Valley, Lichfield and the RDU at the Q.E. for patients to collect.
PLEASE look out for them.
Thanks for your support.

Local News

NOTICE FOR Q.E.H.K.P.A ANNUAL GENERAL MEETING

Notice is hereby given that the Annual General Meeting of the
Queen Elizabeth Hospital Kidney Patients' Association
will be held in the Faith Centre of the Queen Elizabeth Hospital Birmingham
on Wednesday 11th JULY 2012 at 7.30 p.m.
AGENDA

1.	Apologies for absence
2.	Minutes of the last A.G.M. held 11th June 2011
3.	Matters arising
4.	Chairman’s report
5.	Treasurer’s report
6.	Election of Officers and Committee
7.	Appointment of Auditors
8.	Any other business

For and on behalf of the Association Joan Ingram, Secretary Click here to download the nomination form.

Please return to the Secretary, or bring to the A.G.M.
Joan Ingram. Secretary Q.E.H.K.P.A.
6 Cremorne Road Sutton Coldfield West Midlands B75 5AW

U.H.B. Letter to all Dialysis Patients about the cuts in staff levels at dialysis units

U.H.B. letter dated 12th March 2012 to all Dialysis patients about the changes Fresenius have made to staff levels at the Dialysis Units.
Please click the line below to see the letter.

U.H.B. Letter to patients 12 March 2012

If any patient or carer has problems or comments about these changes could you please contact me Nick Flint on my email address flintnf@aol.com and I will ensure they are brought to the attention of U.H.B. The K.P.A. is very opposed to these cutbacks and we are supporting U.H.B. in their efforts to ensure patients receive the best possible treatment in a comfortable and safe environment.

U.H.B. Letter to all Dialysis Patients about the proposed cuts to staff levels in dialysis units

Dear Patient,

Re: Services provided by Fresenius Medical Care (UK) Ltd

You may be aware that Fresenius Medical Care (Ltd) UK recently announced plans to change staffing levels at several of the renal dialysis units they operate for University Hospitals Birmingham NHS Foundation Trust (UHB).

We understand how concerned many patients and carers are about these proposed changes, not least from the many letters and emails that we are receiving, and we have been working hard to establish the facts and bring you the most up-to-date information.

Correspondence from the company, which is legally contracted by UHB to provide an agreed level of service for our patients, stated that the review was as a result of NHS funding issues. We would like to clarify that UHB has made no changes to the level of funding provided to run these units and any implication that we have done so is wholly misleading.

On learning of the proposed changes we initiated urgent talks with the company and requested information about the planned changes to staffing:patient ratios. We will assess these carefully, by unit, to understand the implications for the care that you would receive were these changes to be implemented.

It is worth reiterating that Fresenius is contractually obliged to provide a standard of service that adheres to national guidelines and we will closely monitor the units under review to ensure these are followed and that the company’s full contractual obligations are fully met.

The Trust has worked closely with patients over the past year, measuring the quality of treatment provided in the satellite units and taking on board the results of the patient survey which so many people helpfully returned. We are determined that all of this hard work and time investment, by both the Trust and patients, is used to maintain and improve standards.

Please be assured that patient welfare is our primary concern and this will be the basis of all our discussions with Fresenius.

Further correspondence will be issued to keep you up to date with future developments.

Yours faithfully,

Kevin Bolger, Chief Operating Officer, UHB NHS FT
Paul Cockwell, Consultant Nephrologist, UHB NHS FT

K.P.A. Annual Draw Raised £3800

Congratulations to each and every one of you who bought and sold tickets to help us raise this tremendous sum.

The draw took place on 11th January 2012. Mark Thompson from U.H.B. drew the tickets together with a family member of a patient who visited our meeting.
The winning numbers are detailed below and all the winners have been notified.
A patient’s husband sold a record number of tickets - over £550, which is an amazing effort. Very well done and thank you.
The grand total from sales of tickets is a record £3849.
Thank you to the large number of patients, carers and friends who supported the Queen Elizabeth Hospital Kidney Patients' Association Christmas Draw again this year. We also thank those who made donations to our fund.

K.P.A. Grand Annual Draw Winners

Winners name	Ticket no	Prize	Winners name	Ticket no.	Prize
Mr Thompson, Walsall	11694	£300	Mrs Petal, Wylde Green	19139	£10
Ms Maslen, Rednal	24101	£150	Mr Firman, Bourneville	44200	RecipeBook
Mr Tamang, Handsworth	33907	£75	Ms Berry, Malvern	01164	Recipe Book
Ms Butler-Roscilly,Hereford	08259	£10	Mr Chanda, London	08999	Recipe Book
Mr Janagal, W.Bromwich	39506	£10	Mrs Sutor, Redditch	32332	Recipe Book
Mr Allbut, Oldbury	44826	£10	Mrs Giles, Oldbury	05033	Recipe Book
Mrs Carr, Leominster	00830	£10	-	-	-

The winning tickets were drawn by Staff members at the
K.P.A. meeting on 11th January 2012.
All the winners have been notified.
We would like to take this opportunity to thank all those who very generously supported
the Queen Elizabeth Hospital Kidney Patients' Association.

New Patient Information from the Q.E.

If you go to the new section "patient information" you will find a list of patient information leaflets. These have been produced by the Hospital they are free to download or you can obtain copies of them from the renal unit. There are more to come covering C.A.P.D., Medication, Pregnany and Kidney Problems.

World Kidney Day March 8th 2012

World Kidney Day
This year it is on Thursday March 8th.
The K.P.A., together with the renal unit at U.H.B., will be having a table in the Renal Outpatients area of the Q.E.
There will be patient information and details about the K.P.A.
So if you are in clinic on March 8th or on a ward or visiting a relative or friend, why not pop in, have a look and meet us.
Look forward to seeing you all on 8th March

Peer Support for Renal Patients

The Hospital, under the supervision of Dr Day, has started a Peer Support Programme for renal patients. The aim is to help patient, who would like to talk to someone who has first-hand experience of renal issues topics such as starting dialysis, being on dialysis, what it’s like to do home dialysis, PD, transplantation or just to talk about being a renal patient.
The Peer Supporters are all renal Patients. They have been fully checked out by the Hospital and given training to help and will treat any conversation with the strictest of confidentiality.
If you would like to talk to someone, just ask your Doctor next time you go to clinic or your dialysis unit, and they will organise it for you.
The Peer Supporters are there to help you and your family and carers.
There is more information about Peer Support and how to contact a Peer Supporter. Down load the information on the 'Patient Information' section of this web site.

K.P.A. Tombola and collection at Sainsbury’s

The K.P.A. has been very generously supported by Sainsburys Walsall for allowing us to have a Tombola and collection in their store on 4th July. It was a very successful day we raised £576. Our thanks must go to the customers at Sainsbuys for their generosity. Also Dawn and her Mum for organising the Tombola, and the members of the committee who turned out to support the day. We held another similar event on 10th December 2011. This was also very successfull event and we raised over £500.
It is hoped that we we have another event in July 2012. Details will be posted soon.
If anyone would like to help please contact a member of the committee.

TOMBOLA AT SAINSBURYS WALSALL

See the Diary for more details on the following:

Saturday 9th June 2012 and December 8th. If anyone would like to help on the day please contact a member of the committee.

Blood results at your finger tips

The Q.E. is part of “Renal Patient View” which allows you to view your blood results and transplant list status “on line”. The system is supported by the Department of Health and is a secure web site and can only be accessed by you for your results. If you would like to take up this facility, the forms are at clinics or contact the K.P.A..
It is a very useful addition to the service as your blood results are available about 36 hours after your blood tests. There is also a full explanation as to their meaning. It has an added advantage that should you be away from home and need to see a doctor, you can access your latest results for them to see.
You can see what it is like by going to www.renalpatientview.org and have a look at the demonstration.
If you go to the “links” on the home page you will find a direct link to the web page.

Contact the Clinic for the forms.

The K.P.A. would welcome more support from patients or carers

The K.P.A. has supported renal patients and the Hospital for over 35 years and it is hoped that this support can continue for many years to come, but we need more support from patients and/or families to enable us to offer ongoing help.
We meet at the Q.E. Hospital on the 2nd Wednesday of each month. There are over 2200 renal patients treated at the Q.E. and we only have at our meeting on average 15 to 20 people attending. So if anyone thinks they might like to help in any way, please consider contacting any of the committee members or just turn up on the night. You will receive a warm welcome and you won’t be pressured into doing anything. Any help will be very much appreciated.
We understand that you are all renal patients and it is sometimes difficult to deal with everyday things without volunteering for something else, but we are all renal patients and carers, so we know the problems.
I hope you will think about the K.P.A. and try to come along and meet us.

Look forward to seeing you.

Nick Flint Chairman

THE PRECIOUS GIFT SERVICE 2012

Sunday 1st July 2012 2pm
This is a very special service of remembrance and of thanks giving.
It is organised by the Donor Family Network.
The organization offers support to families whose relatives have been organ donors.
The service is for both donors and recipients of organs.
See the diary for more details.

Woodgate goes to Weston

On a fine and sunny day 52 Patients and carers set off for a day at Weston-super-mare. It was a very enjoyable outing and everyone had a good time.
Even the tide was in when we got there. A first for most of us visiting Weston, reported Dave Davies. It was particularly good as some of the patients find it very difficult to go on outings on their own, but to go with a party of friends and patients and to be supported by staff is very reassuring.
Everyone is looking forward to the next trip which is to see the Blackpool Illuminations.

Woodgate Valley Dialysis Unit.

The K.P.A. now has a Renal Research Fund.

Due to the recent passing away of Geoff Sharp, the K.P.A. has amalgamated a fund that Geoff ran for many years, The Birmingham Queen Elizabeth Kidney Research Fund. This is now being managed by the Q.E.H.K.P.A. This fund will be separate from the money already raised by the K.P.A. which is to support patients and the Hospital. When anyone wishes to donate money and wants to choose which fund the money goes to, we can do this for you. The K.P.A. Research Fund is supporting a 2 year project being undertaken by the Renal Research Department with the sum of £20,000. This will be used to help provide better resources to enable the research department to be more effective in collecting and distributing data relating to renal tissues used for annualising and testing.

Rounders Challenge Match

Birmingham Transplant Games Team

Liver Unit Team

Renal Unit Team

On a very wet and cold Saturday afternoon patients and staff turned out to play Rounders. It was hoped the weather would have been better but a very enjoyable afternoon was had by all.

Three teams of staff and patients turned out from the Hospital, The Liver unit, Renal unit and members of the Birmingham Transplant Games Team, who are all transplant patients at the Queen Elizabeth Hospital.

Each team played each other and the winning team at the end of the afternoon was the Renal Team. Very well done. Everyone enjoyed themselves and decided that they would take up the challenge again next year, but at a warmer time if possible. The event raised £285 which will go to the three charities, The Liver Unit, Queen Elizabeth Hospital Kidney Patients' Association and the Birmingham Transplant Games Team.

Mike Sharpe, Deputy Lord Mayor of Birmingham, presented the teams with medals which were donated by David Nix from the Donor Family Network.

Renal Staff take up the Challenge

A number of staff from the Renal Unit decided to support the K.P.A. by entering a 5K Fun Run held in Cannon Hill Park on Sunday 13th September to raise funds towards the cost of providing new Patient Information Booklets for renal patients at the Q.E. There was a good turnout and Dr Cockwell finished in 5th place. Very well done. The K.P.A. would like to thank all those who gave up their spare time to support renal patients.

Dr. Jo Adu retires after 25 years at the Q.E.

	Dr. Adu MA, MD, FRCP. He qualified from Oxbridge and trained in Guys Hospital London, moving to Birmingham in the early eighties. He is highly respected as an expert clinician and Nephrologist at the Q.E and nationally and internationally as a member of the kidney community. His research has been published in the most prestigious of medical journals and he is recognised as an international expert in the field of kidney disease due to S.L.E.(Systemic lupus erythematosus) He is also recognised for his tireless research in the field of kidney disease in the ethnic minority groups which is particularly important within the population of the West Midlands. Dr. Adu has held executive positions in the Royal College of Physicians and influential health organisations, The Kings Fund and the British Renal Association. Dr. Adu’s time at the QE will be most remembered for his absolute dedication to providing expert patient care and his human touch.
As a mark of his tireless service to patients with kidney disease for more than 25 years, the Queen Elizabeth Hospital Kidney Patients’ Association has presented Jo with a gift on behalf of all the renal patients and we hope he will enjoy using it. We would like to thank him for the dedication and commitment he has shown. We all wish him well for the future in his well earned retirement and may it be a long and very happy one. Thanks again from us all
	A presentation took place at the Queen Elizabeth Hospital on Friday 26th June. Jo was presented with a gift of cut glass from the K.P.A. on behalf of all the patients Jo has looked after in the many years has been at the Q.E. Jo is pictured with committee members of the K.P.A.

The Birmingham Transplant Games Team

As well as a second chance of an improved life, transplantation also gives us a second chance at other things. Before your transplantation you may have had an active life, including sports, or you may have chosen to exploit your new capability. One way of achieving this goal is the British Transplant Games a team from Birmingham has taken part in the games for a number of years now. Anyone who has had a Transplant is eligible to join The Birmingham Transplant Games Team. Some of the events are more challenging than others and if you qualify you could even represent the United Kingdom at the World Transplant Games.
The events that you can compete in are:-
Archery*, Badminton, Lawn Bowls, Cycling, Canoeing*, Darts, Fishing*, Golf, Snooker, Swimming, Squash, Sailing*, Table Tennis, Tennis, Ten Pin Bowling, Volleyball and Track and Field.
• Not at every event.
The British Transplant Games are not only a great sporting event, they also give the opportunity meet others who have undergone the same life changing event and, you can have fun as well.
This year, Coventry is the venue for The British Transplant Games and takes up the weekend of Thursday 30th July 2009 to Sunday 2nd August 2009. Above is a photo of the 2007 Team at the Gala Dinner at The British Transplant Games that took place in Edinburgh.

For more information see, www.transplantsport.org.uk Or contact The Team Manager via Gerald.Brown@sita.aero

Abe Lincoln visits Burntwood!

On the 4th July Gillian Moore organised an American Disco Night and Pig Roast in Burntwood. It was a great success, and Gillian raised £693 for the K.P.A. which is a fantastic amount. The pork was extremely popular and a queue was instantly formed with plenty asking for seconds. Gillian has had lots of requests for a Christmas ‘do’ so we will have to wait and see. The dancing went on til midnight and everyone said it was a great evening. Our thanks go to Gillian and all those who supported her. Well done.

Disco a swinging success

Gillian Moore from Burntwood contacted the K.P.A. and asked if she could organise a disco at a local school to raise money for the K.P.A.. This she did and raised Â£689 for the funds. It was the first time she had organised such an event and she was very pleased with the support from friends and family. Gillian enjoyed the event so much she said she would organise another later this year - watch this space. This is Gillian presenting the cheque to the K.P.A. and receiving a certificate of thanks.

K.P.A. takes to the canals

In September, the K.P.A. organised a canal-side fundraising and awareness event on the canal locks in Birmingham. The event was well supported by the committee members. If any renal patients or carers would like to help with future events, all would be very welcome. Please contact any of the committee for details.

	KIDNEY MATTERS
Queen Elizabeth Hospital Kidney Patients' Association