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NKF In Touch with KPAs Information from The National Kidney Federation – supporting kidney patients, their friends & family

Date: December 2014 Issue: Seven

Welcome to the last edition of NKF In Touch with KPAs newsletter for

2014. NKF would like to wish one and all a very Happy Christmas and

prosperous New Year. Please forward any articles etc that you would like

sharing via the next newsletter to Andrea Brown andrea@kidney.org.uk

by 9th

January.

Contents:

Action Points

NHSBT Christmas Campaign – Page 2

NKF KPA Day 2015 – Page 3

Information

Statement from NHSBT – Page 3 - 4

World Kidney Day 2015 – Page 5

NICE new quality standard – Page 5 -6

Royal Derby KPA –Page 6

NKF Conference – Page 6

Kidney Life – Page 7

NKF Helpline – Page 7 NKF Fundraising – Page 8

Who NKF seeks to

influence:

NHS England

NHSBT

Department of Health

Government Ministers

Welsh Government

Northern Ireland Assembly

Scottish Executive

All Party Parliamentary

Kidney Group

Trusts and Hospitals

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Step by Step Guide - How to show your support NHS Blood and Transplant’s Christmas Organ Donation Campaign 2014

The Christmas Wishlist Print out the blank Christmas Wish list (ideally in colour) Fill it in with two wishes supporting organ donation and a third fun one of your own Take a ‘selfie’ holding up your wish list – making sure it’s easy to read in the picture – involve others and have some fun with it Share it on Twitter and Facebook, anytime from 9am on Monday 15th December up to Christmas Day When you tweet or share it – make sure to include the #donationwish and point people to http://www.organdonation.nhs.uk/campaigns/ to download and print their own wish list to follow your lead (these materials will be available to download from Monday 15 December). So that your wish list is easy to read in the photo, please: Use a black felt marker Write in large letters Keep the messages short For the first and second wishes we would love it if you picked a couple of our key messages from below. Feel free to personalise it if you can to make it more relevant to you and your social networks. Suggested organ donation messages: I wish three people didn’t die every day waiting for a transplant. I wish people talked about organ donation this Christmas

I wish everyone reading this joins the NHS Organ Donor Register today

I wish everyone on the waiting list this Christmas gets a transplant soon

I wish everyone who joins the Organ Donor Register tells their family

I wish everyone who supports organ donation tells their loved ones

I wish we ALL talked more about organ donation

I wish everyone in my community supported organ donation

I wish everyone on the waiting list a Happy Christmas and hope they don’t have to wait too long for a transplant I wish people didn’t have to spend Christmas worrying about not seeing the next one. The third wish is totally up to you. The Christmas Bauble For those who are into origami, we have developed another fun way you and your audiences could show your support to this campaign. Attached is an organ donation bauble template which will also be available to download from http://www.organdonation.nhs.uk/campaigns/ All you need to do is: Print off the template Cut out and create your own bauble!

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The idea is to put it up on the tree at home and have a chat with your loved ones about your desire to be an organ donor. Good luck!

KPA day 2015

28TH MARCH 2015 - PROGRAMME Millennium Room, Arden Hotel, Birmingham, B92 0EH

10.15am - 16.00pm 1015 – 1030 Registration and refreshments 1030 – 1115 Welcome and “What the NKF has done in the last year” 1115 – 1215 What my KPA does – Presentations from Addenbrookes KPA and another KPA 1215 – 1300 AGM 1300 – 1400 Lunch 1400 – 1445 Keynote speaker on proposed changes in Commissioning – TBC 1445 – 1515 Council Meeting 1515 – 1545 Updates Update on the new NKF Transport Group What can we do during Election 2015 1545 – 1600 Open Forum 1600 Refreshments and close

There will be a display area with NKF stands. All KPAs are encouraged to bring examples of any

documents they wish to display on the day. Please contact Andrea Brown at nkf@kidney.org.uk

so we can make sure there will be space for your display. Lunch and refreshments are served free of charge to all KPA delegates who attend.

To book you place please call 01909 544999, places are booked on a first come first served basis. Bookings close on 9th March

NHS Blood and Transplant statement about inquest into deaths of two transplant recipients after kidney transplant from the same donor 4 December 2014 The inquest into the sad deaths of Mr Stuart and Mr Hughes concluded today in Cardiff. These men died in December 2013 shortly after receiving a kidney transplant from the same donor. It is a sad and unique case and the cause of their deaths was found to be an extremely rare nematode that had been transmitted through the transplanted organ and was unidentified at the time of donation. The coroner recorded a

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narrative verdict and concluded that Mr Stuart and Mr Hughes died from the unintended consequences of necessary medical intervention. Over the last year, NHS Blood and Transplant has been working with all the parties involved to understand what happened in this tragic case. James Neuberger Associate Medical Director for organ donation and transplantation, NHS Blood and Transplant said: “This is a tragic case and our hearts go out to all the families involved. “Mr Hughes and Mr Stuart’s families are having to come to terms with the unexpected deaths of their loved ones following their transplants. We hope their questions have been answered during the inquest, and we have offered to meet with them to discuss any further questions or concerns they have. "We are all saddened by what happened. We want to save as many lives as possible through donation and transplantation and we do everything we can to make sure all donated organs are appropriate for transplant. The tragic deaths of Mr Hughes and Mr Stuart show that no donated organ is risk free and while we work hard to minimise the risk of transmitting an infection from a donor to a transplant recipient we cannot completely eliminate it. “It is not uncommon for organs from donors with meningitis or encephalitis of an unknown cause to be transplanted and the evidence shows that it is reasonable for transplant centres to use such organs for carefully selected patients. From an audit of the UK experience of using higher risk organs, we know that 52 donors with encephalitis or meningitis of an unknown cause across the UK donated 159 organs in the ten years to 31 March 2013 and these were transplanted with no transmission of infection. This case happened afterwards and makes Mr Hughes and Mr Stuart’s deaths all the more tragic. The cause of their infection was extremely rare, had only been reported five times in humans and had never been seen in transplantation before anywhere in the world. "Patients in need of a transplant depend on families being willing to donate their loved one's organs to give strangers another chance of life. This is what the donor's family in this case wanted to do and our thoughts are with them too. We urge people to continue to support organ donation and share their decision to be a donor with family and friends. At any one time there are around 7,000 people in the UK on the active transplant waiting list. “Lives are lost on a daily basis because of a shortage of organs for transplant. Last year, 456 patients across the UK died waiting for an organ transplant. A further 828 patients were removed from the waiting list. This usually happens when patients become too ill to receive a transplant and unfortunately many go on to die. If more families agreed to donate a loved one's organs, more organs would be available for transplant and more lives could be saved. “Enabling more patients to get the transplant they need and for as many of those to be as successful as possible is what motivates the donation and transplantation community every day. NHS Blood and Transplant has extensively reviewed the events leading up to Mr Hughes and Mr Stuart's tragic deaths. We carried out our own internal investigation and also commissioned an independent external Review of our internal investigation report together with those from Cardiff &Vale University Health Board and Public Health England, to see if we or others could or should have done anything differently. “We have been carefully reviewing all recommendations. While we have not identified a need to change the policies and processes in place around the offering of organs for transplant, we have been working hard with our partners to ensure that current guidance is readily available to colleagues working in organ donation and transplantation and have published a paper on the use of organs from higher risk donors to help surgeons in their decision making. We will now review the actions recommended by the coroner and see if there is anything more we can to do to improve the organ donation and transplantation pathway.

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“We will be publishing our reports as it's vital that we share learning with colleagues working in organ donation and transplantation. We continue to do everything we can to avoid a tragedy like this happening again in future." The reports from the NHS Blood and Transplant investigation and from the independent external Review we commissioned can be read here. http://www.odt.nhs.uk/odt/governance-and-quality/reports-on-incidents/

WORLD KIDNEY DAY 12th March 2015 Every second Thursday of March, we celebrate World Kidney Day (WKD) to raise awareness of kidney disease and highlight the urgent need for action to prevent and treat this serious health condition. Around 10% of the population suffer from some form of kidney damage, and every year millions die prematurely of complications related to Chronic Kidney Disease (CKD). World Kidney Day is celebrated worldwide, bringing together millions of people in over 150 countries and uniting them to produce a powerful voice for kidney health awareness. Every year, countless local and national events are organised by kidney charities, healthcare professionals, healthcare authorities, and individuals who want to make a difference. Since its inception in 2006, the global campaign highlights a particular theme every year, which for 2015 is: Kidney Health for All Once again the UK initiative is being led by five leading kidney charities including the NKF. If you're planning to hold an event on World Kidney Day 2015, please tell us about it by posting it on our Facebook page www.facebook.com/worldkidneydayuk or email info@worldkidneyday.co.uk. Further details are available through the UK website: www.worldkidneyday.co.uk where you will find support, advice and ideas for activities and downloadable material to help with your event.

Supporting people who need treatment for kidney failure The National Institute for Health and Care Excellence (NICE) has published a new quality standard which sets out how best to care for adults who need treatment for chronic kidney disease.

The new guidelines from NICE was released on 28th November 2014.

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The guidelines were developed with input from Patients and Clinicians and patient members from several Kidney Patient Associations who are integral members of the NKF had input into these guidelines sharing their own experiences and those of their patient members harvesting the widest possible field of need and experience of patient members not just our own views.

On a personal level I tried to include desensitisation with plasmapheresis as a gold standard that hospitals aspire to facilitate more live donations, this was considered but the panel felt that it was too early to be adopted nationally.

One success that the patients were able to influence was on patient transport. The guidelines are that no patient should wait more than 30 minutes for transport before and AFTER treatment. The panel found it useful to personalise this with real examples and I quoted a friend of ours who sadly died a few years ago. This young woman lived about 30 miles away from the unit and was wheel chair bound and only 25 when she died after suffering most of her life on haemodialysis. She often was collected at 0700 in the morning for a morning session and it was not unusual for her to arrive home at 2330. There were a million inventive excuses why this happened and I even fought for her to borrow an air cushion if she was in excessive discomfort after excessive delays. We hope this is an extreme example but it helped forge the guidelines. The next stage is to see the guidelines implemented.

The full standard can be viewed online at /guidance/QS72

(http://www.nice.org.uk/guidance/qs72).

Angela Beale, NKF Executive Committee member

Royal Derby KPA Royal Derby KPA has very recently become a full member of the NKF. Kirit Modi and Sandy Lines attended a meeting of the new KPA on 19 November 2014 to offer support from the NKF. Royal Derby dialysis unit has impressive facilities. The new KPA is fully supported by Professor Maarten Taal, the renal Clinical Director. The photo shows committee members of the new KPA with Prof Taal, Sandy and Kirit.

NKF Conference 2015 Plans for the 2015 Conference are underway; the theme will be “Living life to the full”. Full details of the venue and dates will be given in the next issue.

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Kidney Life changes Kidney Life magazine is an important means of communication to thousands of kidney patients, carers and others. It is available on the NKF web-site at www.kidney.org.uk . In its hard copy format, it is posted free of charge and it is important that this continues. We have taken steps to increase its circulation and I am delighted that this has gone up from 22,000 copies per edition to over 24,000 in the last few months. Our current target is to reach 25,000 by March 2015. However, the cost of Kidney Life to the NKF continues to increase. The Executive Committee has gone through the projected NKF budget in 2015 line by line and reluctantly and unanimously decided that, in order to avoid significant losses overall, we will reduce the number of editions of Kidney Life in 2015 from four per year to three per year. This is a temporary decision and will be reviewed in 2015, once we know more about our budget position. Kidney

Life will be published in February, May and September during 2015. Many thanks to everyone in KPAs for your help in updating membership lists regularly so that our data base for posting Kidney Life is kept updated. If you have any queries about this matter, please contact nkf@kidney.org.uk or kiritmodi1@hotmail.com .

INFORMATION FROM NKF HELPLINE Extract taken from the ‘How are Kidneys

Allocated’ leaflet available from NKF Helpline

The National Matching Scheme The transplant waiting list works on the basis of finding the “right” person for the “right” kidney when one becomes available. It doesn’t work on a “first come, first served” basis. In order to achieve the best survival for transplanted kidneys, there is a national kidney sharing scheme. Therefore, if kidneys are obtained in London, they could be sent as far away as Aberdeen or Cardiff. The matching scheme is run by NHS Blood and Transplant (NHSBT), based in Bristol. Everyone in the country waiting for a transplant is listed on their computer, with their tissue types. There are a set of rules which govern the allocation of kidneys and these are reviewed regularly by a group of transplant specialists. Major changes were made in 2006, with several ‘tweaks’ since then to provide a continual system of monitoring to try and get the fairest allocation of kidneys across the whole of the UK.

The scheme is complicated but, put simply, when a kidney becomes available, the NHSBT computer sees who on the list has the most points. Points are awarded on waiting time and tissue match and further points are awarded for age and how long they have been waiting and for people who are difficult to match. For less than perfect tissue type matches, waiting time is more important and after being on the list for 5 years they will get waiting time points.

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Donate £10 and send unlimited e-cards. Save money and time and help support NKF! Please visit www.charitecards.com/kidney for a £10 donation you can send unlimited e- cards to your friends, family and loved ones. There are 17 categories to choose from and 626 cards! You can send e-cards throughout the year for many occasions. It only takes a few minutes and will save you pounds!

Christmas Star

This is a picture of our lovely Christmas Tree we are proud to display your Shining Star messages. Thanks to everyone who has returned a Christmas Star. It is not too late to return yours (included in the latest edition of Kidney Life)) and have it displayed on NKF Christmas Tree.

Choctober Thank you so much to those of you who took part in Choctober, we

very much appreciate your support, you will be pleased to know that with

your help Choctober raised £6000! and money is still coming in. With

increasing demand on our services and costs snowballing your fundraising

will make a difference. We look forward to your support in the future – look out for our fundraising

events 2015 - Choctober 2015 is just 10 months away!!!

Draw winners – thank you to everyone that entered NKFs Winter

draw, below is a list of the lucky winners:

First Prize – I Pad - T Mallinson – Ticket Number 225610 Second Prize - £2,000.00 - W Sincock – Ticket Number 311346 Third Prize - £1,000.00 – Mr Locke – Ticket number - 198845 Ten £50 Prize winners – A Green – Ticket Number 300936, G Field – Ticket Number 199386, D Hannaford – Ticket Number 289598, D Abbas –

Ticket Number 222425, A Palmer – Ticket Number 36983, P Tarran – Ticket Number 295142, S Fudger – Ticket Number 324296, T Mallinson – Ticket Number 221643, I McDonald – Ticket Number 208739, Mrs Duffy – Ticket Number 244042