NKF In Touch. Information from the National Kidney Federation supporting kidney patients, their friends & family. NKF Conference 2018

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1 NKF In Touch Information from the National Kidney Federation supporting kidney patients, their friends & family Date: DECEMBER 2017 Issue: FORTY THREE Welcome to the NKF In Touch newsletter for December Please forward any articles etc that you would like sharing via the next newsletter to Fiona Broomhead by 10 th January From all the staff at NKF Contents: Information NKF Conference 2018 Page 1 CEO Job Vacancy Page 2 NKF KPA Day 2018 Page 2 World Kidney Day 2018 Page 3 The Kernow decision on Dialysis Transport charging Page 3 Have your say on organ and tissue donation Page 6 Organ Donation fact sheet Pages 7 and 8 NKF Helpline Prescriptions, cold weather, diet and tips Page 9 NKF Fundraising Choctober 2017 Page 10 Santa Run Page 10 Christmas Draw Results Page 10 Trolley Key rings are back Page 11 Christmas Stars Page 11 NKF Weekly Lottery Page 12 The Three Sopranos concert Page 12 NKF events Page 12 Who NKF seeks to influence: NHS England NHSBT NICE Department of Health Government Ministers Welsh Government Northern Ireland Assembly Scottish Government All Party Parliamentary Kidney Group Trusts and Hospitals NKF Conference 2018 We are pleased to announce that the next NKF Conference will be held at the popular Hilton Blackpool Hotel from Friday 19 th to Sunday 21 st October. We are currently working on subsidising the prices considerably per person, thanks to our wonderful sponsors. We will have more details in the next issue of In Touch. 1

2 NKF seeks a new CEO to succeed Tim after his retirement The NKF (National Kidney Federation) is a federation of circa 60 separate Kidney Patient Associations geographically spread across the UK and we are recruiting for a Chief Executive Officer. The NKF is unique because, although there are a large number of kidney charities, we are the only national kidney charity actually run by Kidney Patients for Kidney Patients. Job Title: Chief Executive Officer Closing Date: 31/01/2018 Salary: Negotiable Accountable to: Chair of the Executive Committee Principle Role: The successful applicant will lead the NKF to achieve the charity s objectives as expressed by the Executive Committee. The CEO s role is to enhance and raise the Federation s impact, reputation and profile nationally. The CEO is also charged with leading, motivating and developing the staff to advance and implement organisational strategy. The CEO offers advice and recommendations to the Chair as to ways that the NKF can promote, the welfare of persons suffering from kidney disease or renal failure throughout the United Kingdom, and the welfare of relatives or friends who care from them. Further Details: Contact the Chair (David Marshall) in complete confidence, for the full job specification by chair@kidney.org.uk NKF KPA Day 2018 The next KPA day including AGM and Council meetings will be held on Saturday 7 th April. The day will start at 10.15am and finish at 4pm and will be held at the Glebe Hotel, Warwick. NKF will provide lunch and refreshments for each attendee (providing they have registered to attend). If your KPA would like to nominate someone to be a member of the NKF Executive Committee, please look out for the nomination and registration forms that will be sent to KPA Officers in January. If your KPA would like to speak at KPA day about what your KPA does, then please contact andrea@kidney.org.uk 2

3 Help us bring together millions of people across the world and unite with one powerful voice for kidney health awareness. We are encouraging individuals and patient groups to work together with renal/transplant units in hospitals all over the UK, to support the day by organising an activity or event. The aim is to draw public attention to the importance of maintaining a healthy lifestyle to keep the kidneys healthy, what can be done to protect kidneys before disease strikes, and to assist patients who already have chronic kidney disease. Following the global theme, there will also be a focus on kidney disease and women s health. Ideas for activities and downloadable resources will be available at Contact info@worldkidneyday.co.uk to register your interest and apply for a support pack The Kernow decision on Dialysis Transport charging NKF has now been shown a letter from Dr Iain Chorlton NHS Kernow Chairman, which sets out the revised decisions being made by the CCG following the outcry from patients (supported by the NKF and the All Party Parliamentary Kidney Group) to the threat of charging for transport to and from life saving dialysis treatment. Whilst the NKF is pleased that for patients in Kernow the threat of charging has been mainly lifted, we remain saddened that the principle of free at the point of delivery for health care patients has been lost in favour of individual assessment. Overall NKF believes this to be a retrograde step. Please read the letter overleaf (pages 4 and 5). 3

4 Sedgemoor Centre St Austell PL25 5AS 5 th December 2017 Dear colleague I wrote to you in November to update you on non-emergency patient transport and would like to take the opportunity to update you further. On 5 October, representatives from NHS Kernow, including the Chief Officer Jackie Pendleton and myself Dr Iain Chorlton, Chairman; a representative from Kidney Care UK; St Austell MP Steve Double, and members of the hospital s renal team including renal consultant Paul Johnston, met to discuss the impact of these changes on people who receive dialysis. This was a constructive meeting and a number of actions were agreed: During our consultation process, staff working at renal treatment centres repeatedly told us that they did not want to be involved in making decisions about who should be given NEPTS. We have agreed to work with Kidney Care UK and the hospital s renal team to develop a draft medical assessment for renal patients. This work will be clinically led by renal consultant Paul Johnston and once agreed this assessment process will be incorporated into the NHS Kernow non-emergency patient transport policy. Concerns were raised for people who do not receive pension credits and could be regarded as well off and as such would have to pay for their transport. It was felt that due to the frequency of travel the cost burden to this group could be significant. NHS Kernow is considering this point. The renal team will also work with the hospital s central booking office to ensure that any queries or bookings for renal dialysis patients would be referred back to them. As mentioned in our previous correspondence, the hospital trust applied a four week extension to the implementation of this policy whilst this work is undertaken. Of the 161 dialysis people receiving dialysis at Royal Cornwall Hospital at that time, we were advised that around 77 did not qualify for NEPTS on financial grounds. Most of the remaining patients would likely qualify on medical grounds and we are continuing to work with renal consultants and teams from the CCG to establish medical criteria to assess someone s eligibility. 4

5 The planned actions have not yet been completed and we are continuing to work with renal consultants on the development of the assessment criteria for this specific group of patients to ensure it is clinically evidenced, robust and transparent to support clinicians and transport booking staff to correctly assess someone s eligibility. As a result we have further extended the transition period to 15 January 2018 to allow completion of this important work. Once agreed this assessment process will be incorporated into our non-emergency patient transport policy. Our aim is to ensure equity for all people living in Cornwall that use non-emergency patient transport and as such we are also in discussion with Plymouth Hospitals NHS Trust. Please do not hesitate to contact me or my team if you would like more details. Yours sincerely Dr Iain Chorlton NHS Kernow Chairman Page 2 Kernow payment for Transport to and from Dialysis Madeleine Moon MP ( Chair of the All Party Parliamentary Kidney Group ) is to look into the possibility of drafting a ten minute rule bill to raise the Payment for Transport to Dialysis ( Kernow ) issue. The purpose would be to explicitly enshrine in legislation that transport is integral to renal dialysis treatment and transport to and from dialysis should be free. While this probably won t change legislation it can serve as a useful tool to raise awareness. 5

6 Have your say on organ and tissue donation We have launched a consultation about organ and tissue donation. This is because the government intends to change the organ donation system to an 'opt-out' system. This means people would be considered willing to be an organ donor after their death, unless they had opted out. We want to find out what people think of how the changes to the system should be made, and what else they think the government needs to consider. Please tell us your views by responding to our consultation. Have your say >> Click here to answer the D of H questions:- 6

7 4,753 people in the UK received a transplant in 2016/17 from living and deceased donors. This is a 20% increase over five years 1. 4,753 received transplants There was a 4% increase in the number of deceased donors in 2016/17 to 1,413, the highest number ever 1. 1,413 donors 4% 2016/ people died last year while on the transplant waiting list or within one year of removal. 50 of these people were Asian and 26 were black. A further 875 people were removed from the list, mainly because they were too ill to undergo transplant surgery % of families agreed to organ donation in 2016/17. 62% of families agrees to organ donation in 2015/16. The number of deceased donors in the UK has increased almost every year, however consent rates have remained relatively static at 60% for over a decade 1. 63% consent rate Three quarters of black and Asian people tell us they would consider or would donate some or all of their organs 2. Currently only 35% of people from black, Asian and minority communities agree to donate when asked in hospitals 1. More black and Asian lives would be saved if more black and Asian people donated. only 35% consent The number of living donors fell in 2016/17 by 3% to 1,043. There has been a gradual decline in recent years from a peak of 1,148 in 2013/14. Living donors make up 42% of all organ donors. Many black and Asian kidney patients often have to rely on family members and friends donating. In 2016/17, 17 black people became living donors, and 79 Asian people became living donors 1. The 1,043 living donors during 16/17 include 86 people who made an altruistic donation to someone they don t know living donors altruistic donors NHS Blood and Transplant surveys consistently show that 8 out of 10 people would consider donating their organs 2. In 2016/17 3,144 families were asked to agree to organ donation but 1,172 families said no, meaning only 6 out of 10 potential donors actually donated 1. consider donation agree to donation 1 Source: NHSBT data 2 Source: Kantar Research April

8 93% of families agree to donate if their loved one is on the NHS Organ Donor Register and if they are asked about donation by a Specialist Nurse in Organ Donation. Only 46.7% of people agree to donate if their relative s wishes are unknown. Only 27.5% of people agree to donate if a SNOD is not involved in the approach to the family % of all deceased donors were from black, Asian and minority ethnic communities in 2016/17. This figure was 4.3% five years ago. 22% of transplant recipients are black and Asian and 29% of people on the transplant waiting list are black and Asian. 232 black people and 487 Asian people had organ transplants during 2016/17 1. In 2016/17 white patients waited an average of 806 days for a white kidney transplant, an 806 days Asian patient waited Asian 962 days, and a black 962 days patient waited 1,074 days 1. black 1074 days 18% of the people who died waiting for a transplant in 2016/17 were from black, Asian and minority ethnic communities 1. 18% BAME NHS Blood and Transplant surveys show more than 80% of people support organ donation but only around 41% of people have ever talked about it. They are most likely to speak to a spouse or partner, and then to either a parent or a child 2. support donation talk about donation Only around 30% of black and Asian adults have had a conversation about organ donation with their family compared with around 41% of all adults in England 2. support donation talk about donation In April 2017 the top 5 barriers to organ donation were: (1) I don t want to think about death 18% (2) I worry my family might be upset 12% (3) I worry hospital staff might not try as hard to save my life 12% (4) I don t know enough about it 9% (5) I m too old, my organs would not be of use 11% 2. At September 2017/18, there were close to 24m people on the NHS Organ Donor Register, which is 36% of the population. This figure is rising. In England, there are nearly 20m people on the NHS Organ Donor Register, or 36% of the population. In Wales, 39% of the population is on the ODR. In Scotland, 45% of the population is on the ODR. In Northern Ireland, 42% of the population is on the ODR 1. During 2016/17, the overall family consent/ authorisation rates for organ donation were: England 62.6%, Scotland 63.3%, Wales 63.8%, Northern Ireland 65.2% 1. For the latest NHS Blood and Transplant Statistics, including weekly and monthly updates, quarterly updates by country, and annual reports including a BAME donation report, visit 1 Source: NHSBT data 2 Source: Kantar Research April The most common age group on the NHS Organ Donor register is 21-30, making up around 22% of all registrants. Only around 22.5% of registrants are aged over 50, despite the average age of a deceased donor reaching 51 in 2016/17. Recently around 7% of new registrants who have opted to give their ethnicity, have said they are from black, Asian and minority ethnic communities 1.

9 Helpline NKF helpline is free to call Information from NKF HELPLINE Prescriptions To all dialysis and transplant patients please remember to make sure you have all the medication you need over the Christmas period and to see you through to the New Year. Remember many health centres and chemists will be closed over the holidays. Check for opening times with your GP or Pharmacist. Cold weather With current cold spells of weather, if you are a dialysis or a transplant patient keep as warm as possible and try and avoid contact with people who have coughs and colds etc. Renal Diet over Christmas Christmas treats and mouth watering foods are everywhere and dietary restrictions are difficult. It is important you follow your renal diet. Treats are possible but please check with doctors or a dietician before eating or drinking something that is not good for you. Diet tips Christmas pudding, fruitcake and mince pies are all high in potassium (due to the dried fruit and nuts) so have a small portion of ONE of these foods. (ie. dessert spoon of pudding, one mince pie). Better choices would be trifle, meringues or apple pie with double cream. Try to keep to just one treat per day. Iced Christmas cake 2oz/50g (one small piece) 1 ordinary mince pie 10 Liquorice Allsorts 2 Chocolate Mini Roll 5 After Eights The foods listed above can be swapped for 1 piece of fruit or 1 portion of vegetables. This dietary information does not replace the advice of trained health care professionals and the NKF cannot accept any responsibility for inappropriate use of this information. Merry Christmas and a Happy New Year from the NKF Helpline. 9

10 Fundraising To date, this annual fundraising challenge has raised over 11,000 in donations and the money is still coming in! Should you wish to make a donation, donations can be made by Cheque made payable to NKF and sent to NKF, The Point, Coach Road, Shireoaks, Worksp, S81 8BW Bank Transfer to Lloyds Bank Plc, sort code , account no (remember to quote CHOC17 and your name) Telephone with a debit/credit card. Tel: Online Click on the link Your support is very much appreciated and makes a big difference to the lives of kidney patients and carers throughout the UK. Without donations and sponsors the NKF would not be able to continue its vital work. Santa Run On Saturday 9 th December in a very cold Battersea Park in London, 9 of our supporters took part in this year s Santa run and to date have raised 1,548 for the NKF. Christmas Draw Results Thank you to everyone that took part in this year s NKF Christmas draw, the winning tickets were picked on Wednesday December 6 th at the office in Worksop. We are pleased to announce the winners 1 st Prize 1,750 Mr M Emmerson Ticket Number nd Prize 1,250 Mrs J Birch Ticket Number rd Prize 300 Mrs J Osborne Ticket Number th Prize 200 Miss D Arnell Ticket Number th Prize 100 Mrs L Todd Ticket Number th Prize 50 Mr M Rumeckles Ticket Number

11 Trolley Key Rings are back NKF Trolley Key rings, great stocking filler. As we all know the new 12 sided 1 coin has been introduced and the old one is now out of circulation. Supermarkets across the UK are changing their trolleys to accommodate the new 1 coin. But, I hear you shout I have an old trolley key ring token. NKF to the rescue In July we offered the new 12 sided 1 coin trolley tokens and sold out with over 700 being sold. Great news we have more available at 1.50 (includes P&P) and you will be supporting the NKF by purchasing yours through us. To purchase yours and one for friends and family too please go to or call these will be delivered to you before Christmas. Why not add to your order one of our new fold away shopping bags? These are priced at 2.00 each Christmas Stars Thank you to everyone that has sent in their Christmas stars messages and donations. The photo shows the stars all displayed on our head office Christmas tree but if you would like to read all the special messages please visit 11

12 NKF Weekly Lottery For just 1 per week you could win up to 25,000 by playing the NKF lottery and help support kidney patients. For more details please visit =NKFUK_HEALT Felici was delighted to arrange the Three Sopranos Concert to support the NKF in Edgware in October The audience enjoyed this new concert greatly and we had our first standing ovation!" From the right; Margaret Johnson, Jennifer Carr, Zoe Jasco, Jessica Wiley and Kirit Modi NKF Events Thank you to everyone that has supported the charity this year, we really have seen an array of different events raising money for the NKF I am sure all those people who took part had a great time. Next year the charity have even more events to take part in, please visit if you do take part you will receive our full support and help with your fundraising. If you want to organise your own event we can help, just contact the fundraising team on or events@kidneynkf.com To unsubscribe from this newsletter please nkf@kidney.org.uk 12