© WKPA 2014

CYMDEITHAS CLEIFION ARENNAU CYMRU

WELSH KIDNEY PATIENTS’ ASSOCIATION

Registered Charity No. 1050907 Website : www.wkpa.org.uk ©

THE HOSPITAL DIALYSIS TRANSPORT CAMPAIGN CONTINUES

As you will see on pages 2-3, the WKPA is committed to improving the hospital transport for HD unit based patients.

Please help us help you by sending details of how you have been adversely affected by poor service or lack of re-imbursement for using

your own transport. Tell us by any means you wish, write to the WKPA office, email wkpa@hotmail.co.uk or use the form on pages 2-3 Thank you

KIDNEY TRANSPLANT INQUEST UPDATE

As we go to press members will be aware of the on going inquest into the deaths of Darren Hughes and Robert Stuart, both of whom passed away

in December 2013, following transplant surgery. The WKPA sends sincere condolences to both families; and to the family of the donor.

DIALYSIS HOSPITAL TRANSPORT – TO AND FROM UNIT UNIT : HEALTH BOARD : NAME OF CITY/TOWN/VILLAGE

DO YOU USE YOUR OWN TRANSPORT ? YES

IF YES. DO YOU RECEIVE EXPENSES ? YES

IF YES, HOW MUCH DO YOU RECEIVE PER MILE ? IF NO, WHY NOT ?

NO

NO

DO YOU TRAVEL BY :

(3) TAXI (2) VOLUNTEER CAR (1) AMBULANCE

HOSPITAL DIALYSIS TRANSPORT-PROGRESS TO DATE In the last issue we asked those of you on hospital based HD who were having problems with their transport to and from dialysis, or who were having problems in claiming reimbursement for travelling in private cars, to let us know the facts. To date we have received twenty replies. Please keep the WKPA up to date on the situation on the ground. We need to have grass root members tell us what is happening so that we can bring these issues to the attention of the Health Minister, C.E.’s of the Health Boards, WAST and all concern in the provision of the hospital transport service. A letter has been sent to Mark Drakeford, Health Minister, with copies to WAST, C.E.s of all Health Boards, C.O.s of all C.H.Cs and to members of the WRCN.

A full copy of the letter can be viewed on our website:- www.wkpa.org.uk

At a meeting in October at the Assembly Brent Roberts, Chair, was told that there is “a window of opportunity” to improve this service. HELP US TO IMPROVE THE HOSPITAL TRANSPORT SERVICE

WE WILL LISTEN AND SEEK ACTION !

WKPA AGM/Conference Evaluation Summary-2014 A total of 27 responses were returned from a cross section of the renal community – carers (53%), professionals (7%), haemodialysis (15%), PD (4%), transplant patients (22%) and live donors (11%) and pre -dialysis (9%) - Many thanks to all. Of these,74% found out about the AGM through reading the magazine. All respondents recorded the presentations as the most enjoyable part of the afternoon, with 89% rating them as excellent. ‘Exercise on Dialysis’ and the patients' experience of 'Live Donation' seem to have stirred up greatest interest.. Response to the various questions aimed at evaluating internet use revealed that 74% had visited www.wkpa.org.uk. However, less than half of this number (33%) visited the Facebook page and less than a quarter (15%) visited the Twitter account while 19% had completed an online survey. Both the content and presentation of the website was classed as 'Good' by 70% and 78% respectively. In addition, comments received showed a very positive feedback. The venue and refreshments were rated Excellent or Very Good by 88% and 70% respectively. A number of constructive comments raised will be helpful in identifying areas for improvement and development in planning future events. Jan Williams (Committee member/Trustee)

BEQUESTS AND DONATIONS. The WKPA is run by unpaid volunteers. As a non-fundraising body, the Association relies on donations and grants which are the main source of its income. In the year ending March 2014, its total expenditure was £10,880.76; total income was £5,840.96. The downward trend in income has been evident for the past two years. Your committee makes every effort to keep the running costs as low as possible and total expenses for 2013/2014 were £971.72. All our funds are committed to helping renal patients in Wales either directly through the Welfare Fund or indirectly by lobbying for better

renal services and facilities in Wales It is important that we receive sufficient funds to cover our expenditure, therefore, if you feel you would like to support the Association’s work by making a donation, please get in touch with us.

Help us to help renal patients and their families in Wales.

10TH ANNIVERSARY CELEBRATION FOR THE RENAL AND DIABETES UNIT GLAN CLWYD HOSPITAL BODELWYDDAN

At the beginning of 2014 Dawn Oliver, Transplant Specialist Nurse, lead a 10th anniversary group from Friends of Renal Care and Diabetes group to arrange an event to be held on Sunday September 7th, 2014. The day arrived and what a lovely day it was, a large marquee in the grounds of Bodelwyddan Castle was our venue. The caterers arrived and on the menu was Hog Roast, buffet food and seven large cakes. All very good, as we had 550 people to look after; families, patients and friends. Entertainment was provided by the Trelawnyd Male Voice Choir and the Pickford Brothers, with added support from the Hospital Radio. A big thank you to all the medical team for their support. :- Jean Evans

Photos of the day submitted by Jean Evans

COME AND HELP MORRISTON RENAL UNIT CELEBRATE ITS 30TH ANNIVERSARY

“Honouring the past, celebrating the present, building the future” Staff, patients, family and friends (past and present) are welcome to come to the above event which will be held on Sat. March 28th,2015 at the MANOR PARK COUNTRY HOUSE, SWANSEA. Tickets for 3 course meal with live music are £25 inclusive of raffle ticket. Tickets ,which are NON REFUNDABLE , are available from the Dialysis Unit (contact Tony, Rhian or Gail) and Cardigan Ward (contact Beverley or Asia), Morriston.

ORGAN DONATION – AWARENESS CAMPAIGN During the week , 22nd – 26th September the team visited Fresher events across Wales with the theme:

“It’s time to talk to students about organ donation” The photos show the team (helped by members of the WKPA) at Swansea University where students were given advice on the new law.

(above) Gloria Owens Talking to students at the Freshers’ Fair at Swansea

University

CAMPAIGN PLANS FOR 2015 1/12/2014 marked a year to go until the introduction of the legislation and there is still much to do. A date for the diary is 19th January 2015 as it marks the start of next year’s advertising campaign. As in previous waves of publicity there will be TV, Radio and on line adverts as well as a number of new case studies who have agreed to assist the PR campaign and help raise awareness and understanding of the new legislation.

JOHN REEVER THANKS DONOR AND FAMILY

John, whose daughter Dawn, was married in Scotland on 10th, August, said “It was the proudest day of my life to give Dawn away. I owe it to my donor and donor family that I am here to see her wed.”

(above) John Owens (WKPA) and

Rob Donovan (WAG) talking with students at

Swansea University.

Don’t forget to join the Organ Donation on FB and Twitter

FESTIVAL OF FLOWERS AT ST. MICHAELS AND ALL ANGELS CHURCH ,CWMBRAN

( KIDNEY FAILURE AND THE GIFT OF LIFE) Lawrence and Meryl Evans’ church, St Michaels, decided to organise a festival of flowers in honour of all donors. After many years on dialysis, Lawrence received a transplant a few years ago. Sheila Morgan ,another church member, who sadly passed away in January had received a kidney from her husband Bill (many of you will recall Bill was secretary of the WKPA). Gwyn Harris, Vice Chair of the WKPA and his wife, Maureen attended the opening evening on September 25th. In Gwyn’s words “ the festival was enjoyable and colourful” Lawrence and Meryl who own a business in Cwmbran (Cane and Able) are pictured below presenting Gwyn with £482.70 from the sale of carrier bags at their shop. Below, Meryl’s arrangement reflects life post transplant and, in her words “a time where there is light and hope for the recipient but, also a time for reflection and thanks for another chance of life brought by the fantastic transplant teams and the generosity of donors and their families”

UPDATE ON THE BI-ANNUAL THANKSGIVING SERVICE The above service held in memory and thanksgiving to donors, their families and everyone involved in organ donation, is usually held in the Autumn. Due to the fact the Order of St John’s award for families of organ donors now takes place at this time of year, it has been decided to hold the Thanksgiving Service in Spring 2015. Look out for details of the Service on the WKPA website www.wkpa.org.uk and the WKPA FaceBook page.

WKPA CONFERENCE/AGM :- A GREAT AFTERNOON I have been to almost all the WKPA’s Conference/AGMs over the past 35 years and I must say that this year’s ranks amongst the best. The lively atmosphere was in no small way due to the excellent mix of presentations from the guest speakers. Renal illness is no “ride in the park” as we all know too well. The presentations given on the day contained harsh realities yes, but with a mix of compassion, humour and empathy. The nature of renal failure and its treatments mean that patients make strong bonds with each other, and it is this reason the WKPA’s annual meeting is always well received. Many thanks to our speakers :- Clare Weekes, renal physiotherapist, who combine her talk on exercise on dialysis with a wealth of humour; to Lynn Davies and Elaine Saunders, whose dedication to helping patients choose the best options for vascular access, was evident in the earnest approach to explaining the need to choose your type of access surgery wisely before starting haemodialysis ; to Helen Burt , live donor coordinator and her patients Bernie and Mark Wilkes, whose talk on the “journey” through the live donation process, was full of emotion and humour….. I am told it moved some in the audience to tears. Thank you to them all for sharing their knowledge and experiences. It is always good to see our friends from North Wales make the journey each year, especially this year as our new Chair Brent Roberts hails from Wrexham. So many thanks to Jean, Brian, Dawn, Julie and, last but not least , Angela, Brent’s wife who was a great help especially in the raffle, where Tom and Megan Casson proved to be a great hit! Thank you Tom and Megan for all your help pulling out the tickets. Many thanks to Chris John and Angela for selling the raffle, and to all of you who brought prizes:- Gloria Owens N.B. SEE FEEDBACK ON PAGE 4

Transplant patient Helen Jones from Glynneath with her mother Helena

Specialist nurses Dawn Oliver and Julie Williams from North Wales

PHOTOS OF THE DAY - SEE MORE ON OUR WEBSITE WWW.WKPA.ORG.UK AND “LIKE” OUR FB PAGE FOR MORE

NEWS

A huge thank you to our brilliant speakers:- Clare Weekes( renal

physio at Morriston). Elaine Saunders and Lynn Davies( vascular access nurses at

UHW). Helen Burt( Live Donor coordinator at Morriston) with Bernie and Mark Wilks, living

donor and recipient.

WKPA President, Prof. J. Salaman

Tom and

Megan Casson help Angela

Roberts in the raffle - many

thanks to them both - they did and excellent job - see you

again next year

Renal patient Martyn Connop presented a painting to the Depart. of Clinical Psychology and Counselling based at North Cardiff Dialysis Unit, Pentwyn Cardiff. The painting of the Snowdonia National Park is in oils and will be hung in the department for the enjoyment of both staff and patients. Martyn has had an interest in art and craftwork from a young age. He began painting over 20years ago. Initially he took classes in watercolour painting but over the years has also become proficient in the use of both oils and acrylics. At the time he first began painting he was diagnosed with renal failure. He received a kidney donated by his mother which lasted 18 years. He is currently on home HD and is being worked up to receive another live kidney donated by his sister. Martyn is married to Tina and has a daughter Katy who is following in her dad’s footsteps and has recently started at University. Martyn has a stall at Abergavenny Arts and Crafts Market on the second Thursday of every month selling his paintings and also a range of greetings cards including Christmas cards based on his original works of art. This will run up until Christmas and it will reopen in April 2015.Martyn thoroughly enjoys painting and says ‘This artwork will hopefully contribute to making patients feel more comfortable about using the service, and landscapes are particularly relaxing to look at. Art tends to give a ‘homely’ feel as often clinical areas can feel quite cold and unwelcoming.’ Continued page 11

MARTYN’S PAINTING GIVES A “HOMELY” FEEL TO UNIT

Martyn is pictured with his wife, Tina, presented the painting to Maria Nunan and Jan Woolweaver

Renal Counsellor, Maria Nunan and Department Secretary, Jan Woolweaver ,were delighted to receive the work. ‘This artwork will not only contribute to making the overall experience at the Renal Psychology service more pleasant for patients but will also show patients that life can still be enjoyable and rewarding with a chronic illness.’ The Clinical Psychology and Counselling Service is open to renal patients at UHW and its satellite units, and their families, at whichever stage of renal failure they are in. If you feel you would benefit from using the Service; speak to your specialist nurse or contact us directly on 029 20748455.:-Submitted by Maria Nunan, Department of Psychology UHB

A TRIBUTE TO MICHAEL PHILLIPS Sadly Mike Phillips passed away in August 2014. Mike was a Cardiff Befriender and was very active in this capacity. He regularly participated in Information Mornings and Support Groups held for pre– dialysis patients and their carers over the years. He often filled in at the “drop of a hat” when someone else had been forced to cancel. He commenced CAPD in August 2007. He had fascinating tales of where he actually carried out his bag exchanges-often on his boat and sometimes causing us nurses to close our ears, yet to Mike’s credit he never had an episode of peritonitis. When he spoke to pre-dialysis patients he showed them his file containing numerous pictures of him carrying our his bag exchanges on a makeshift drip stand with his grandson in various locations. Patients enjoyed looking at these, and hearing him speak, as he was a good example of making dialysis fit into his life, and in enjoying life despite his health problems. We shall miss Mike terribly. He was a true gentleman, a reliable and friendly Befriender who also donated generous sums of money to the Cardiff Pre-dialysis service via the Magor Churchmen's society. Our sincere condolences are sent to Mike’s family over his loss. May you rest in peace Mike. Submitted by Sr. Nerys Thomas UHW

IMPORTANT NOTICE If you have received a copy of this magazine addressed to someone who is no longer able to receive it, please accept our sincere apologies for this, and let us know. Similarly, if you see a copy of this magazine in your renal unit, or elsewhere, and wish to be put on the WKPA data base, please contact us. Write to the Editor, John Owens at 69, Harlech Crescent, Sketty, Swansea, SA2 9LL or Tel.01792 207962. Alternatively you can email clyne@owens76.freeserve.co.uk

Withybush Hospital’s new £7.8m renal unit opened its doors in September, and has started to treat some local patients as part of the first phase of opening. The 21 station, state of the art renal unit is a service that has been provided thanks to a collaboration between the WRCN, WHSSC, and Hywel Dda and ABM UH Boards. Bernardine Rees OBE, Chair of Hywel Dda UHB said: “I’m delighted that Pembrokeshire patients are now able to receive their treatment in such a modern facility without travelling far from home. “This development is excellent news for the people of Pembrokeshire and our renal patients who will directly benefit from this significant investment into Withybush Hospital.” Nicola Shaw, Regional Business Manager for Fresenius Medical Care Renal Services, who are commissioned to provide the service added: "We have been providing the service for the last six years and so were delighted to be selected to operate the service in the new unit. We know that patients have waited a long time for a permanent unit so at long last they can access a first class service and facility." Patient Hannah Whatley from Pembroke Dock, who has a genetic disorder which has resulted in the need for dialysis, had previously been travelling to Morriston and Glangwili Hospitals to receive her treatment. Mrs Whatley said: “The new unit is fantastic and the staff have been brilliant, nothing is too much trouble for them.” Carol Legg from Freystrop, who is also benefiting from being treated closer to home, added: “Previously when I was travelling to Glangwili Hospital I would have to be up at 5am to get my lift which was such a long day.” The facility includes consulting, training and treatment areas, together with seminar and conference facilities. Source: Hywel Dda UHB Pictured below with patients Hannah and Carol are Bernardine Rees, Mary Robson, Clinic Manager and Jonathon Johnson of Fresenius.

HAVERFORDWEST RENAL UNIT WELCOMES NEW PATIENTS

WELSH KIDNEY RESEARCH UNIT (WKRU) BID — SUCCESSFUL

A bid for funding submitted by the above unit to NISCHR (National Institute for Social Care and Health Research ) has been successful, meaning that NISCHR has prioritised kidney research because of the need to better understand and treat kidney conditions, and because of the expertise in this area in Wales. This excellent news for renal patients throughout Wales and will ensure continuity of Welsh renal research that has always played a major role in advancing diagnosis and treatment for renal illness /disease and failure. The WKRU brings together renal researchers from every unit in Wales. It has evolved from the All Wales Clinical Research Network with which the WKPA has been involved since 2011. Jan Williams and Gloria Owens, patient representatives on the WKRU, supported the current bid by providing valuable patient insight into renal research. We are thrilled to learn of this exciting update as there were bids from several sectors of medical research in competition for funding. Research is vital to ensure that treatment and practises available continue to improve resulting in better outcomes for renal patients. Many thanks to Dr Donald Fraser, PhD FRCP, Reader and Honorary Consultant Nephrologist at the College of Biomedical and Life Sciences, Cardiff University, who took the lead in collating the bid and many thanks to all the consultants and renal researchers across Wales who were involved in securing the funding. It is vital for patients with renal disease that excellent renal research in Wales continues.

DONATION FROM ALL SAINTS CHURCH, NEWPORT Members of the parish church of All Saints, Newport have collected donations from November 2013 and have donated £1210 to the WKPA. Thank you so much to all the church members for your tremendous effort and your support.

GIFT IN MEMORY OF MARGO JONES Many thanks to the family of Margo Jones for the kind donation of £374.50 donated to the WKPA . The money was donated in lieu of flowers. Margo’s daughter, Rachel Rowles from Blaenavon, praised the staff at Pentwyn for the care given to her mother. The WKPA sends condolences to Rachel and family on the loss of their loved one.

MANY THANKS TO THE CYMRAEG SCOOBIE CLUB

The Cymraeg Scoobie club based in South Wales raise money regularly for charity. They chose the WKPA as one of their members Emma Waters, pictured above second left ,is a transplant patient. A big thank you to all the members for their generous donation of £250. Pictured with Emma presenting the cheque to Chair, Brent Roberts are club members ; from left to right Clare Parsons ,June Chandler, and Mark Jones.

KIDNEY MATTERS WALES -IMPORTANT NOTICE At the WKPA committee meeting on 20th November, members were advised that Rob Wood of CHAS HUNT who prints this magazine is retiring. The WKPA would like to thank Rob and his staff, Sarah, Hannah and Bridget for the fantastic service they have provided the WKPA. We wish Rob, a transplant patient himself, all the best in his retirement and many happy days on the golf course. In view of the fact that we are changing printers and the need to ensure the continuing production of KIDNEY MATTERS WALES, the committee decided to take the next few months to review how changes can be introduced that will guarantee its long term future. To that end the next issue will be in summer 2015 The magazine is the WKPA biggest expenditure costing £4748.80 a year ; the largest part of this is the postage. The WKPA is able to send the magazine to any member who would prefer to receive it via email. There will be a News Page on our website where you can get news as it happens. The WKPA has a FB page and Twitter account ; you can access these on our website :www.wkpa.org.uk . Please follow them for updates on what is happening in the renal world in Wales. John Owens: Editor, Kidney Matters … Wales

PAULPOPHAM FUND SUPPORTS WKPA WELFARE FUND Joanne and Claire Popham have set up the Paul Popham Fund in memory of their dad who passed away in 2012. Many of you will remember Paul who was a popular member of the Cardiff Transplant team. A team of 23 runners took part in the Cardiff Half Marathon this year. (see photo) Their aim is to raise funds for the WKPA’s welfare fund.

In Joanne’s words on her “mydonate” fundraising page :- “The Fund has been set up in memory of my Dad to support people like him in Wales receive a better quality of life as a renal patient” Donations to Joanne and Claire can be made via the WKPA website www.wkpa.org.uk - click on Mydonate BT and click sponsor a fundraiser , type in Joanne Popham. Donations will be accepted until 5th, January 2015 - many thanks to the PaulPophamfund for supporting the WKPA.

DONATION IN MEMORY OF TONI AND LEE ROBERTS Penny Barter and Toni were best friends for many years. After Toni passed away in 2008,Penny kept in constant contact with Karen, Lee and Toni’s mum. In 2012 Penny was selected to run the London Marathon in memory of Lee and Toni, unfortunately she was taken ill and could not compete. The friends, relatives and shop owners of Newbridge, who sponsored her still wished to donate. To this end she collected £200 which Karen gave to Prof. Aled Phillips to be used specifically for the WKPA. Gregg Churcher of Abercarn Fitness Centre, also collected for the WKPA by joining in half marathon cycling events around Cardiff. Karen says a big thank you to Penny and Gregg for collecting much needed funds and also for remembering Lee and Toni plus helping others in similar situations. A BIG THANK YOU FROM THE WKPA TOO Submitted by Karen Roberts; Toni and Lee’s mum.

CAVEAT AND DISCLAIMER The Editor and Editorial Sub

Committee of the WKPA do not accept responsibility for any errors in

information published in Kidney Matters Wales, or for views and

opinions expressed by contributors.

Editor John Owens

Editorial Sub Committee D. Masters, J. Reever & A. Reever

Contributions should be sent to the Editor

email: clyne@owens76.freeserve.co.uk

© WKPA 2014

Printed for the WKPA by Pugh’s Colourprint (UK), Seaway Drive, Seaway Parade, Industrial Park, Port Talbot, SA12 7BR

We are here to help

NEW COMMITTEE MEMBER Hello Readers My name is Veronica and let me start by saying how privileged I feel at being elected on to the WKPA committee. Perhaps the first thing I should point out is that I am not a kidney patient but I am a carer for my husband, Graham who will need some form of dialysis in the very near future.

Why do I want to serve on the committee? Quite simply because I care. I was so impressed and touched by the support offered by WKPA at a pre - dialysis “educational event” organised by Morriston Hospital last year. It was immediately obvious to both Graham and I that the role undertaken by WKPA was invaluable and so worthwhile that I wanted to belong and help where I can. I have a long working career in the Public Sector and hopefully will be able to utilise those skills and knowledge for the good of WPKA. My hopes and aspirations as a Committee Member are ; in the main :- To fully understand Renal Failure and its associated issues for both the patients and carers alike. Proactively and successfully help in the representation of Renal

Patients/Carers views to the powers that be ( whoever they are)

My promise to all of you patients and carers alike is that I will do my best

and will always have your interests at heart.

Wishing you all a Merry Christmas and let's hope for a successful 2015

for all Renal patients and their families who look after them.

Kind Regards,

Veronica Carter