© WKPA 2014

CYMDEITHAS CLEIFION ARENNAU CYMRU

WELSH KIDNEY PATIENTS’ ASSOCIATION

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

Don’t forget our See inside for details AGM

© WKPA 2014

We would like to hear from patients who are dissatisfied, either with their hospital transport or are unable to claim reimbursement for using your own vehicle to and from your units for your dialysis sessions. If this applies to you, please complete and return the form below and on page 3 as soon as possible. You can do this by:- a) post to Brent Roberts, Chair, 15, Spring Gardens, Rhosddu, Wrexham, LL11 2NX. (b) Fill the form in on line at www.wkpa.org.uk. (c) email to :- wkpa@hotmail.co.uk. N.B. This campaign will be on going so please do not hesitate to contact us with your experiences as, and when, they occur. The WKPA has over 1300 individual patients on its mailing list who receive Kidney Matters Wales to their home address. In addition, copies are sent to all the units in Wales. Please would those members who receive the magazine, let your fellow patients know about this request for specific examples of how hospital transport is failing patients, whether it be the transport or the fact that some members have problems with claiming reimbursement for using their own vehicles. Copies of this response form will be in the unit for other patients to complete this form. Please help us in our efforts to improve this vital part of your care plan. Read more on pages 4 and 5.

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

WE WILL LISTEN AND SEEK ACTION !

HOSPITAL DIALYSIS TRANSPORT — GIVE US THE FACTS Hospital dialysis transport has always been a major problem for patients. This fact is acknowledged by all involved in its provision - not least the patients! There are a substantial number of patients who are receiving a poor service. The WKPA is asking those of you who are experiencing poor hospital transport and those of you who use your own vehicles to and from dialysis, or are unable to claim reimbursement, to help the WKPA highlight this issue with the Minister for Health and those involved in providing the service You will notice the questions asked relate to where you live, your unit and the Health Board in which you live. This information is important as, should you live in an area covered by one Health Board yet dialyse in another, it could have an adverse affect on both your transport and any reimbursement you are entitled to claim. A good hospital transport provision is essential to the well being of patients on haemodialysis and is an integral part of their care package. Failures of the emergency ambulance service often hit the headlines, yet there are few examples that highlight the trauma experienced by dialysis patients, who rely on non emergency hospital transport, which often fails to provide a good service. The WKPA believe that dialysis patients should have a “dedicated transport service”. The Renal NSF Standard for hospital dialysis transport states:- “That all patients requiring long term haemodialysis have access to a facility and a transport system that keeps travel times to an average of thirty minutes or less for each journey” This is known as the 30-30-30 standard. WAST and Health Boards used to recognised this as the standard that measured how well ambulance dialysis transport was performing. However, the new “buzz” words in the Ambulance Service are “Key Performance Indicators” The performance of the transport service is now measured by these KPIs. This is a “loophole” that means failure to provide the 30-30-30 standard is not shown in ambulance performance figures. The failure of the pilot scheme at St Woolos; the failure of the providers to uphold the “Renal Dialysis Patient Transport Charter; and importantly, the failure by WAST and Health Boards to engage with one another to improve the transport provided to a substantial number of patients who experience a poor service; are the factors behind the WKPA’s aims to bring this issue to the top of the agenda for the NHS providers of this Service

continued on page 5

HOSPITAL DIALYSIS TRANSPORT, GIVE US THE FACTS, continued. The WKPA needs your help to do this. It will not be easy to change the mind set of the those in the NHS – however it is vital that we bring this matter to the forefront. Your committee is made up of patients and carers like yourselves. We have been through, or are going through the same problems you face. We are all volunteers and speak with the “patients voice” To do this we need your help. Please fill the form on pages 2 and 3 and return to the WKPA. This will be an on- going “battle” N.B. if you experience a problem in the future , let us know. Keep the facts coming– we need to build up examples where your hospital transport/ mileage reimbursement is failing you. The WKPA is writing to Mark Drakeford, Minister of Health to ask that Hospital Dialysis Transport be adequately funded to provide a “dedicated service” for hospital dialysis patients that adheres to the 30-30-30 standard

KEY FACTS WE ALREADY KNOW 1) The 2010 National Kidney Care survey states:- “No other medical condition requires such frequent travel back and forth for treatment - for months and years on end - like haemodialysis does. Patients have to make six journeys every week - Christmas and holidays included. Transport is therefore a significant component of the patient's experience and it is no wonder that it is frequently cited as the part that most needs improving.” 2) The 2012 National Kidney Care’s survey states:- “Despite high levels of overall satisfaction, there remain many examples of poor patient experience, particularly in the time taken to return home after a dialysis session. When providers use multiple drop offs, patients report 45‐minute journeys taking two hours, and having to sit in cold

vehicles for 20 minutes at a time while less able patients are helped into their homes.” 3) The WKPA HD satisfaction surveys in 2007 and 2012 in which questions on hospital transport were included, provide data that support the following conclusions:- Whilst many patients reported an overall satisfaction with transport provision, there are many problems with the Service. In particular there is concern over unacceptably long journey times to and from dialysis; waiting times of 30 minutes or more after dialysis. When compared with 2007, the 2012 survey shows an increasing number of patients rating transport as 'good or excellent'. However, significant dissatisfaction over Dialysis Transport remains a concern for almost 30% of respondents to the survey.

During National Transplant week, 7th — 14th, July, the Organ Donation Wales team took to the road to undertake a programme of over 50 talks and public drop in events across Wales. We were fortunate to have the amazing support of a number of organ donor champions who volunteered to attend events to share their own personal stories and to help put the legislation in context. We estimate to have spoken to, or handed out information to, in the region of 10,000 individuals across Wales over the course of the week whether this was in libraries, supermarkets, workplaces, hospitals or local authority offices. The anecdotal feedback from the events was overwhelmingly positive with many of those spoken to either having heard about or at least being aware of the legislation and its implications for organ donation consent in Wales from 2015. The vast majority of those we met, when asked, were also in favour of the legislation and its aims. However, this is not to say everyone was aware or indeed in favour, but we were able to share information and for those who were already clear on their desire to opt out, detail was provided on how to do so from next summer. The week was also the start of what we hope to be a partnership approach to the communications campaign going forward involving not only our organ donor champions but our communications colleagues across local health boards, local authorities and NHSBT. If you haven’t done so already please follow our Twitter feed @OrgDonationCYM or like our Organ Donation Wales Facebook page for the latest news. Remember “ It’s time to talk about Organ Donation” please chat with family, friends and colleagues about the soft opt out law. Source:- Organ and Transplantation, e — bulletin: July 2014.

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MORE PHOTOS ON PAGE 7

Photos on page 6, Brent Roberts (WKPA), Beth Shereliker ( Welsh Government ) at Wrexham and Katie Creagh-Barry (Cambrensis) with John and Gloria Owens (WKPA) at Asda, Gorseinon. Pictured above, Pat Vernon and Beth Shereliker (WG) at Wrexham library and Gloria and John Owens at Morrisons Swansea

RE - CYCLE BIKE RIDE North Wales had its own special cycling event to celebrate and which took place on the eve of National Transplant Week on Sunday 6th July. Congratulations to the 50 riders who took part in the RE - CYCLE event

between Wrexham, Glan Clwyd and Bangor. The volunteers included,

nurses, doctors, a donor family member and the general public.

Organised by The Betsi Cadwaladr Organ Donation Committee, the bike

ride was designed as a means to promote organ donation, celebrate life

and remember organ donors and their families. It is hoped the event will

become an annual fixture. More information from:-

www.recyclefororgandonanation.com or follow

https://www.facebook.com/ recyclefororgandonation.

Photos below courtesy recyclefororgandonation.

ORGAN DONORS RECOGNISED AT HOSPITAL

A special area honouring the memories of organ donors and recognising the important role they and their families play in saving lives across the UK has been opened at University Hospital of Wales. The hospital plays a vital role in providing transplant services for South Wales and has a team of specialist nurses to support families on organ donation issues. In the last six years 341 life saving transplants have taken place in the UK thanks to the generous decision of patients and families at Cardiff and Vale University Health Board. Families of organ donors joined staff for an emotional service at the Lakeside at UHW where a bench dedicated to those who have given the gift of life was officially unveiled as part of National Transplant Week. Andrew Mallet, who honoured wife Debra’s wish to donate her organs, was among the families attending the ceremony and encouraged others to talk about organ donation. He said: “It’s very important when it comes to things like this – a lot of people don’t really think about it.” Maria Battle, Chair of Cardiff and Vale University Health Board met with families who jointly cut the ribbon at the ceremony. She said: “It is really moving and humbling to come here to listen to these touching stories of people giving the gift of life. There is nothing more admirable for a family to do and on behalf of the Health Board and all those who have benefitted from the organ donation programme over the years, I would like to thank everyone here today and everyone who has played such an important role in this life saving service.” The service was one of a number of events supporting National Transplant Week and its core message around ‘spelling it out’ – encouraging people to make their views on organ donation known to their friends and loved ones. The bench will be joined in coming weeks by a cherry blossom tree and be a place for families to remember their loved ones.

On Thursday 10th July, a beautiful memorial bench to commemorate and remember organ donors was unveiled at the Lakeside area of the University of Wales Hospital in Heath, Cardiff. The event was arranged by colleagues

at the Cardiff and Vale University

Health Board. See photo left

Continued on page 9

Continued from page 9 Dr Chris Hingston, a consultant intensivist and regional clinical lead for organ donation, thanked Caerphilly Garden Centre for donating the bench to the memorial area and the Cardiff and Vale Health Charity for supplying the memorial plaque. He said: “I want to thank those loved ones and those that have donated. It is through the strength and courage of donors and their families that we are able to have this transplant programme in the first place. We have come a long way and that is evidenced by the fact that there are less people on the waiting list today.” “The bench is a great symbol and people can come and sit here and remember. It will also hopefully make people think about speaking about their wishes around organ donation with their friends and family and Potentially make a difference to someone’s lives.” Emma Bennett, Specialist Nurse for Organ Donation at Cardiff and Vale UHB, said: “The memorial means so much to myself and colleagues Susie and Angharad as we feel that donors and their families deserve recognition and to be remembered. “It is such a great honour and privilege to work with our families. Their courage and bravery to consider others at a time of such sadness never ceases to humble and amaze us.” Source and photo:- Cardiff and Vale University Health Board: July 2014

ORGAN DONATION MEMORIAL GARDEN PENPARCAU, ABERYSTWYTH

The week also saw the formal launch of a wonderful organ donation memorial garden in Penparcau , Aberystwyth. Plans for the garden have been led by Teresa and Alan Wilkin, whose daughter Claire died of a brain hemorrhage in November 2010 at the age of 34. Organ donation by its very nature marks a tragic end of life for one family but the gift of life for another. For Teresa and her husband Alan, the decision to donate her organs was a source of great comfort to the family. The new garden now offers a beautiful and contemplative area for the whole community and celebrates the lives of those who have donated. Source: Organ and Donation e-bulletin July 2014

Photo: courtesy Penparcau Community Forum

Pictured unveiling the plaque with Mark Drakeford, Minister of Health, is Rob Kendrick, patient at Merthyr who has campaigned for a new unit for

many years — Well Done Rob !

Health Minister Mark Drakeford officially opened a state-of-the-art renal

unit, in which the Welsh Government has invested over £2m in capital.

Built to replace the old unit in Prince Charles Hospital, which has been

experiencing maintenance problems with the fabric of the current

building, air conditioning and water supply, the new facility will improve

the patient experience in a number of significant ways, such as:

“It has more capacity than the older unit, an additional 17 stations,

allowing all suitable patients to be treated locally, rather than face the

need to travel. There will also be cubicles for increased privacy for

patients. The unit can provide local treatment for a wider range of

patients than the original unit, such as those with, or queried to have, a

blood borne virus. The space around each station has been increased,

reducing the risk of cross infection or contamination and making possible

the use of mobile hoists”

NEW UNIT OPENS AT MERTHYR TYDFIL

The unit also contains a self care area, which once in use will further encourage greater independence, a key factor in managing long term conditions such as Chronic Kidney Disease. It also contains a training area for home dialysis, providing a helpful transition between unit and home. Health Minister Mark Drakeford said: “Even in these financially challenging times, we are serious about investing in infrastructure, technologies and services to help support the NHS in Wales to deliver essential services to patients. At a time of such perceived uncertainty, we are committed to improving services in Wales to make them safe and sustainable for now and into the future. “We want to continue to modernise facilities and increase capacity for dialysis in a number of sites across Wales as part of a programme of development in renal dialysis care. “Above all else, this new unit has more space, greater opportunity for privacy, more light and is a welcoming area, all of which will help improve the patient experience.

Pictured top left : the new unit, and right, Rob Kendrick with his grandson, Joshua. Below: Left, Rob cutting the tape with Max Boyce and Right, Angela and Brent Roberts, Gloria Owens (WKPA) with Rob Kendrick.

Well done and thank you to the engineering students, lecturers and support team for donating to the WKPA. On 19th,June, a very hot Sunday, the group had a sponsored bike ride starting at Ystradgynlais Scout hut to Mumbles Pier and back. They raised a fantastic £1020.60 ! The proceeds were shared between the WKPA and FAST( a charity supporting a 2 year old child who has Angelman Syndrome.

PTA ENGINEERING NEATH PORT TALBOT COLLEGE SPONSORED BIKE RIDE 19.6.14.

Top photos: Students; Alexander Bentley, Joshua Davies, Thomas Fellowes, Alun Griffiths, Jordon Hale, Matthew Hopkins, Patrick James, Nathan Lupton, Rhys Morgan, Matthew Williams Lecturers; James Llewellyn; Chris Hughes and James Dean. Bottom photos: Support team; Cheryll Morgan, Steve Welch, Julian Hoile with lecturers enjoying a “halfway drink” and the students presenting the cheque for £510.30 to John and Gloria Owens of the WKPA. Photos courtesy of Cheryll Morgan and Steve Welch

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

Jean Jenkins retired in June 2014 after giving 34 years of dedicated service in the Nursing field. She has worked as a Chronic Kidney Disease Clinical Nurse Specialist for the past 10 years at University Hospital of Wales. She will be sorely missed by all her colleagues and patients. There will be a “huge gap” to fill. Jean was our public speaker; and carried this out with great panache. We wish her well in her future endeavours. Submitted by: Sister Nerys Thomas Chronic Kidney Disease CNS

SISTER JEAN JENKINS RETIRES AFTER 30 YEARS

© WKPA 2014

Printed for the WKPA by Chas Hunt Printers, Unit 2, Senlan Industrial Estate, Rhymney River Bridge Road, Cardiff CF23 9AF

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Colleagues gathered at Morriston unit to bid farewell to Dr Adesina who joined the team in 2005. Popular with both staff and patients Kunle will be sorely missed by all who knew and worked with him. Staff at the unit presented him with a painting of Mumbles and two signed prints of the Wales Rugby team. In his “ farewell speech” Dr Adesina emphasised the need for a close working relationship with staff and patients that is vital in renal medicine. He added he would carry the maxims that he had learned at Morriston into future ventures. Gloria Owens

Dr Kunle Adesina, consultant nephrologist at Morriston renal unit, pictured at his leaving do. John Reever (pictured), thanked Kunle for the care he has given patients at Morriston and wished him well for the future.

Welsh Kidney Patients’ Association CONFERENCE/AGM - 2014

At THE HI - TIDE, PORTHCAWL OCTOBER 18th - 2.00 pm

Speakers “Exercise on Dialysis “Clare Weekes, Renal Physiotherapist, Morriston

“Vascular Access” Lynn Davies, Elaine Saunders UHW

“Living Donation” .The Personal Journey. Introduction Helen Burt

Speakers: Bernadette and Mark Wilkes, Morriston

For catering purposes Could you please reply to :

Brent Roberts on 01978 366020 or 15, Spring Gardens, Rhosddu, Wrexham LL11 2NX

or Return the attendance form on page 16 of this magazine. Alternatively you can complete the form online, at www.wkpa.org.uk. Thank you. Should you wish to join the WKPA management committee, please complete the form on page 15 and return to Brent Roberts. (Chair)

Registered Charity No. 1050907 Run by patients for patients

Nominations for membership of the Association’s Management/Trustee Committee for 2014/2015

I agree to accept nomination as a member of the Management

Committee and Trustee of the registered charity.

Signed : ___________________________________________________

Nomination must be returned by Friday September 12th, 2014 to : -

Address : * ___________________________________

___________________________________

___________________________________

Telephone No : * ______________________________

Email : ______________________________

Proposer’s Name : * ______________________________

Seconder’s Name : * ______________________________

Name : * ___________________________________

Hon. Treasurer

Chairman Vice Chairman Hon. Secretary

Brent Roberts, Chair, 15, Spring Gardens, Rhosddu, Wrexham, LL11 2NX email:Carrington57@gmail.com

Should the nomination be for an Honorary Officer, then please insert a cross in the relevant box

* These sections must be completed

Tel. No. 02920 742735 & 02920 748455 Registered Charity No. 1050907

Welsh Kidney Patients’ Association Cymdeithas Cleifion Arennau Cymru

© WKPA 2014

©

CONFERENCE/ANNUAL GENERAL MEETING

Saturday October 18th 2014 at 2.00 pm

The Hi-Tide Inn, Macworth Road, Porthcawl

Afternoon Tea will be provided

I confirm my attendance

I will not be able to attend

Donation enclosed

I will require (number of seats)

(please inform asap for booking purposes) Name Address Telephone No. email

Please return the completed form by Friday 10th October 2014 to:

Tel. No. 02920 742735 & 02920 748455 Registered Charity No. 1050907

Welsh Kidney Patients’ Association Cymdeithas Cleifion Arennau Cymru

Brent Roberts, Chair, 15, Spring Gardens, Rhosddu, Wrexham, LL11 2NX Email:- Carrington57@gmail.com

© WKPA 2014

©