Press Release On this page you will find the latest press releases from the renal world. The content you will read are the views of the author and not always the views of the NKF. National charity launches campaign after discovering home dialysis could reduce the risk of catching Covid-19 The National Kidney Federation (NKF) has launched a national campaign to increase home dialysis across the UK so that patients who dialyse in a hospital or a dialysis unit can be kept safer from Covid-19. The charity is writing to many key members of the kidney communities including all clinical directors for their support. Data produced by the UK Renal Registry, covering the period until 25th November 2020, shows that 637 patients (3.1%) who dialyse in a hospital or a unit died from Covid-19 compared to 56 patients (1.3%) who dialysed at home. Honorary president of the NKF, Kirit Modi, said: "We are most grateful to the amazing support NHS staff continue to provide to kidney patients in these exceptional circumstances. We now know that kidney patients who dialyse at home are safe from Covid-19 compared to patients who dialyse in a hospital or a dialysis unit. We are urgently requesting hospitals to review their provision for dialysing at home and to offer it to more kidney patients. There is significant unwarranted variation in the provision of home dialysis across the UK at present. We are urging ministers of health in the four nations and the whole kidney community to take action now and help save lives." The NKF hosted a webinar in September 2020 which highlighted that there were substantially lower rates of both Covid-19 infections and deaths among those who dialysed at home. The NKF believes that increasing the proportion of patients having home dialysis could offer significant benefits to them, by reducing the risk of Covid-19 and other infectious diseases. This is mainly because patients who dialyse in a hsopital or a unit have a higher risk of infection; having to travel to and from their home for dialysis and having to spend hours in a hospital or a unit each time they dialyse. The NKF has published a 28-page national report which urges the kidney community to step up and increase home dialysis provision. It makes seven recommendations and the charity wants all adults in the UK to reach a minimum prevalence rate of 20% of their dialysis population on home dialysis by the end of 2024. The NKF is also requesting the chairpersons of its member Kidney Patient Associations (KPAs) across the UK to offer their support locally and to alert their local MP about this matter. The NKF will establish a peer support service for home dialysis patients and carer so that they have the opportunity to talk in confidence to patients and carers with first-hand experience of home dialysis. Click here to read the full home dialysis report. Local family climbing Ben Nevis to support people with kidney disease A mother and daughter from a York village are climbing Ben Nevis to support people living with kidney disease. Steph and Milly Marley, from Elvington, are undertaking the challenge for the National Kidney Federation (NKF). "When my daughter was born, she developed acute kidney failure due to birth complications," Steph said. "We very nearly didn't get to keep our beautiful baby girl." According to the Renal Registry, nine children in every million under the age of 16 start long-terms treatment for kidney failure. "Milly is a fighter and with the amazing care she received from the doctors and nurses, she made it. "She lived with chronic kidney disease until she was 15 and she needed a transplant." Milly received a kidney transplant in December 2018 after her dad was found to be a match, and after a year of post-transplant complications and prolonged hospital stays, is now stable and well and the York College student is looking forward to starting university this year. "She has the chance to live a healthy life and we are ever grateful to her dad for this gift of life that he gave her," Steph said. "Despite all the difficulties, I am so proud of what she has achieved. "We would like to thank Dr Eric Finlay and his team at Leeds General Infirmary for the care and support they showed Milly while she was in hospital." After the transplant, Milly was looking forward to getting back to normality. However, Covid-19 arrived in the UK forcing Milly, and thousands of other kidney transplant recipients, into a period of shielding. After being on their own journey, Steph and Milly want to help others who find themselves in a similar situation, and found the NKF's climb up Ben Nevis to be the perfect opportunity to give back. "This has been a challenging journey that we have been on together as a family. Now, Milly and I plan to face another challenge together - to trek up Ben Nevis." Steph said. Head of marketing and fundraising at the NKF, Pete Revell, said: "With everything that's happening in the world at the moment it is so nice to hear a story like this. Milly has conquered kidney disease with the help of her father and and now with the help of her mothers she is conquering Ben Nevis. "Their support for the NKF is amazing and much needed. Thank you." The mother and daughter duo have already reached their fundraising target of £1,200 and are determined to raise as much money as possible. You can support them at www.justgiving.com/marley-team. National Kidney Federation (NKF), requests review of of prioritisation of Covid-19 vaccination for patients receiving in-centre dialysis NKF wish to request urgent attention to move in-centre haemodialysis (ICHD) patients from priority group 4 to priority group 1 (equivalent to elderly people in residential homes) for receiving the Covid-19 vaccination. This will protect a large, unique and highly-vulnerable subset of patients within those who are clinically extremely vulnerable. During the Covid-19 pandemic, the highest risk group of patients for death from Covid-19 has been the 24,000 UK patients with end-stage kidney disease (ESKD) requiring in-centre haemodialysis (ICHD), in a hospital or a dialysis unit. They need dialysis treatment three times a week. Patients need to travel to and from the centre and have to spend around four hours for each dialysis session in the centre. They are, therefore, at a greater risk of exposure to Covid-19. Around three patients with kidney failure are dying of Covid-19 each day at present. The vaccine could prevent this, improve service delivery and protect the kidney transplant programme. Kirit Modi, NKF president, said: "The coronavirus vaccination will save lives and it is important that those most vulnerable get vaccinated first. Those who dialyse in a centre seem to have been forgotten in the prioritisation, announced by the government. We are requesting urgent action to add these patients to priority group 1." Linked UK Renal Registry and Public Health England (PHE) data indicates that there was approximately a one in five (20%) risk of death within 14 days for those ICHD patients who acquired Covid-19 in the first wave of the pandemic. The risks were high even among young dialysis patients. By 11th November almost 3% of patients (662) receiving ICHD in the UK had died of Covid-19, and approximately half of these patients were below 65 years of age. The median age of patients receiving ICHD in the UK is 67.4 years; therefore, the majority of patients receiving ICHD in the UK are not captured by the proposed prioritisation system until group 4. This patient group will not be vaccinated first in the current prioritisation, since only around 18% are aged 80 or more. Dialysis nurses already vaccinate their patients against hepatitis B and influenza. The whole population could be rapidly vaccinated against Covid-19 by dialysis nurses without impacting upon the national vaccination programme. Since the ICHD population is a large group of extreme risk patients whose risks are substantially higher than the current priority group 1 for vaccination against SARS-COV-2, the National Kidney Federation requests that they are added to this group without delay. Hospital dialysis patients face increased risk of Covid-19 Kidney patients receiving dialysis in hospital face an increased risk of contracting Covid-19, according to data published by the UK Renal Registry. The report shows that there were fewer than 4% of new infections with home dialysis patients, compared to 12% in those who dialyse in hospital. The number of Covid-related deaths were also higher for people dialysing in hospital, compared to at home. The figures came to light during the National Kidney Federation's (NKF's) webinar on home dialysis. The NKF are campaigning to increase the levels of home dialysis in the UK. Currently, only 7% of people on dialysis are dialysing at home, a figure which the NKF say needs to increase. Andrea Brown, chief executive of the National Kidney Federation, said: "Home dialysis has huge advantages for both the patient and hospital. "Home dialysis allows the patient to have a degree of freedom and the statistics show that in the current climate, dialysing at home is much safer than dialysing in a hospital." Brian Child, vice-chairman of the NKF, cared for his wife when she was dialysing at home. "Patients whose carers carry out the dialysis procedure for them are placing an enormous degree of trust in their carer. This can produce a very strong emotional bond between them which can be incredibly rewarding." During the webinar, Dr Graham Lipkin, president of the Renal Association, highlighted the impact of Covid-19 on dialysis patients and shared national findings on home dialysis from the draft Getting It Right First Time (GIRFT) report. John Roberts also gave a presentation on what home dialysis is like for a patient. "Home dialysis freed me from a hospital routine and allowed me to continue a busy social life. I was also able to take my own machine on holiday which meant I could spend more time with family and friends." The NKF's campaign will focus on increasing home dialysis in the UK in the context of the disproportionate impact of Covid-19 on patients who dialyse in a centre. Data published by the UK Renal Registry, based on information up to 7th October 2020 in England, shows that 2,443 (11.8%) of in-centre home dialysis (ICHD) patients contracted Covid-19 and 550 (2.7%) died from Covid-19. There are similar figures for those who dialysed at home. Out of the 4,306 patients who dialyse at home, 143 (3.3%) got Covid-19 and 50 (1.2%) died. The NKF has written to clinical leads of renal services and to all chairs of Kidney Patient Associations (KPAs) to request their support in encouraging more patients to dialyse at home. A report on the webinar, together with recommendations, will be published by the NKF in January 2021. Local family raise money to help son with kidney disease A family from Croydon has raised over £1,400 to help their son Tim, who was born with kidney disease. The Watsons took part in the National Kidney Federation's (NKF's) annual Choctober event, which asks fundraisers to give up chocolate for the month of October to support people with kidney conditions. Dad Jamie said: "Our Tim was born with kidney disease and was always going to need a kidney transplant at some point in his life. He is on dialysis and has been on the transplant list for over two and a half years. "Unfortunately, during the pandemic, he has lost two potential kidney transplants." Twelve-year-old Tim, who is adopted and on the autism spectrum, is not able to eat large amounts of chocolate because of the high potassium and phosphate intake. "Tim is normally allowed a very small chocolate bar a day and he loves his chocolate so this is a real test for him." Head of fundraising at the NKF, Pete Revell, said: "I have been amazed by the level of support this year; I really thought this year's Choctober event would suffer because of Covid-19, but I am pleased to say we are on track for the best Choctober ever! "A record number of people are taking part and we've received a record amount of fundraising. Thank you to everyone who has given up their favourite treat for 31 days and raised vital funds for the support of kidney patients." The family has raised close to £1,500 and patients Jamie and Jason are amazed at how much their children, Tim and Riley, have raised and are proud at how well they've taken to the challenge. "They have both done so well and we've not had a single moan! "We are very proud of the amount they have raised and it is way more than we ever expected." Chigwell woman raises money in memory of aunt A Chigwell woman has raised over £400 to help people with kidney disease. Amanie took part in the National Kidney Federation's (NKF's) annual Choctober event, which asks fundraisers to give up chocolate for the month of October to support people with kidney conditions. Amanie undertook the challenge in memory of her aunt Kanbir, who passed away in April after being diagnosed with kidney failure. "My aunt was diagnosed with kidney failure aged 32, and she sadly passed away this year. "Reflecting on the years she suffered and the sacrifices she made for me, giving up chocolate for a month does not even compare. "Without my aunt making lifelong sacrifices, receiving a kidney transplant and dialysis, me and my family wouldn't have got the extra 20 years we did with her." Some kidney patients are not able to eat chocolate because it is high in potassium and phosphate. Head of fundraising at the NKF, Pete Revell, said: "I have been amazed by the level of support this year; I really thought this year's Choctober event would suffer because of Covid-19, but I am pleased to say we are on track for the best Choctober ever! "A record number of people are taking part and we've received a record amount of fundraising. Thank you to everyone who has given up their favourite treat for 31 days and raised vital funds for the support of kidney patients." Amanie conceded that the challenge has been difficult, but she will be extending her chocolate ban until Tuesday 10th November, which would have been her aunt's birthday. "My first bit of chocolate will be my aunt's favourite, a Cadbury Wispa, on the 10th November, which is her birthday." Family raises money in memory of dad A family from Ealing has raised over £1,000 in memory of their father and uncle. Rupinder took part in the National Kidney Federation's (NKF's) annual Choctober event in memory of her father Baldev. Rupinder was joined in the challenge by her cousins Amar and Kiran. The event asks fundraisers to give up chocolate for the month of October to support people with kidney conditions. Rupinder said: "My cousins and I wanted to raise money for the NKF in my late father's memory. He prematurely passed away last year and was a renal patient who had chronic kidney failure." Head of fundraising at the NKF, Pete Revell, said: "I have been amazed by the level of support this year; I really thought this year's Choctober event would suffer because of Covid-19, but I am pleased to say we are on track for the best Choctober ever! "A record number of people are taking part and we've received a record amount of fundraising. Thank you to everyone who has given up their favourite treat fro 31 days and raised vital funds for the support of kidney patients." Rupinder said that Choctober was a great way to remember her father, as some kidney patients are not able to eat chocolate because it contains large amounts of potassium and phosphate. "Raising money for the NKF was a heartfelt way to remember him and to give something back to other renal patients who are living with this terrible illness, which affects every aspect of their lives as well as their families' lives - something I've experiences first-hand. The trio celebrated the end of their challenge with chocolate-covered French toast. Grandmother raises money to support grandson with kidney failure A local grandmother has raised over £700 to help her three-year-old grandson who has stage 5 kidney failure. Yvonne Flood, from Accrington, took part in the National Kidney Federation's (NKF's) annual Choctober event, which asks fundraisers to give up chocolate for the month of October to support people with kidney conditions. Yvonne's grandson Shaemus, has stage 5 kidney failure and has peritoneal dialysis for 12 hours every night and has regular check-ups at the hospital to maintain his health. This is the second time a member of Shaemus' family has taken part in Choctober. Last year, his older brother Sean raised over £800. Shaemus' mum Sarah said: "The impact of Shaemus' health has been devastating and at times, very hard to comprehend. His treatment is at the moment keeping him stable, but we face multiple challenges in the future. "He needs to be 12kg in weight and 90cm in height for a kidney transplant. He currently weighs 11kg and is 81cm in height. We worry a great deal about the major operation he faces and whether his respiratory issues will affect him in theatre and afterwards." Shaemus, like many other kidney patients, is not able to eat chocolate because of the amount of potassium and phosphate it contains. Yvonne said the challenge has been difficult, but is worthwhile to help Shaemus and others. "Shaemus is the reason I have done the challenge and as a person who loves chocolate, it has been quite a challenge but well worth it for the charity." Head of fundraising at the NKF, Pete Revell, said: "I have been amazed by the level of support this year. I really thought this year's Choctober event would suffer becauseof Covid-19, but I am pleased to say we are on track for the best Choctober ever! "A record number of people are taking part and we've received a record amount of fundraising. Thank you to everyone who has given up their favourite treat for 31 days and raised vital funds for the support of kidney patients." You can read Shaemus' story at www.kidney.org.uk/blog/shaemus-story. Local woman raises over £800 for charity A local woman has raised over £800 to help her husband who has kidney disease. Jacqui Chody, from Oxhey, took part in the National Kidney Federation's (NKF's) annual Choctober event, which asks fundraisers to give up chocolate for the month of October to support people with kidney conditions. "My husband John was unwell 5-6 weeks ago so we went to Hammersmith Hospital to see his nephrologist." Jacqui said. "I was sat in the waiting room and I saw a poster promoting Choctober and as a chocoholic, I thought this challenge would be perfect for me." John, like many people with kidney disease, is not able to eat chocolate because of the amount of potassium and phosphate it contains. Despite being a self-confessed chocoholic, Jacqui said she found the challenge quite easy. "I'm surprised because I haven't missed chocolate one bit! "The challenge has been great for me as it has helped me lose a bit of weight." Jacqui has been joined by her stepson, Jake, who has been providing her with support throughout the month. Head of fundraising at the NKF, Pete Revell, said: "I have been amazed by the level of support this year. I really thought this year's Choctober event would suffer becauseof Covid-19, but I am pleased to say we are on track for the best Choctober ever! "A record number of people are taking part and we've received a record amount of fundraising. Thank you to everyone who has given up their favourite treat for 31 days and raised vital funds for the support of kidney patients." Jacqui is already planning her next taste of chocolate, choosing to wait until she can attend a friend's party. "I was thinking of extending the challenge but I've decided the next piece of chocolate I will eat will be at a friend's tea party." Local schoolboy raising money to help kidney patients A pupil at Harewood Infant School is undertaking a challenge to help people with kidney disease. Six-year-old Thomas Davis, from Gloucester, is taking part in the National Kidney Federation's (NKF's) annual Choctober event, which asks fundraisers to give up chocolate for the month of October to support people with kidney conditions. Thomas initially signed up to give up five chocolate bars, but decided to go the whole month without chocolate and he has vowed to get as many donations as possible to help 'people with poorly kidneys'. Mum Anna said: "Thomas came home from school with letters and donation forms asking parents to donate to the NKF. After having a conversation with Thomas and explaining who the NKF are and what they do, he decided that instead of giving up the five chocolate bars that his class had decided on, he would give up chocolate for the whole month!" Some kidney patients are not able to eat chocolate because it is high in potassium and phosphate. Head of fundraising at the NKF, Pete Revell, said: "Thomas is a little star. He has no connection with kidney disease but still wants to give up chocolate and raise funds for people affected by this dreadful disease. I take my hat off to hom." Thomas has so far raised over £200.00 and is keen to continue fundraising. "As his parents, it was so heart-warming to see that he was getting involved in it, so I made him a JustGiving page and got friends and family to share it and we are amazed with the donations so far." Anna adds. "Thomas checks his page every day!" Fundraisers "hang up their boots" after raising £16,000 for kidney patients Janice Pound, 81, Brenda Minns, 87, and Beryl Smith, 89, are calling it a day after 12 years of making and selling crafts and managing car boot stalls, all to support people living with kidney disease. The trio, from Horstead and Norwich, started fundraising in 2008 after Janice's husband, David, developed kidney failure which was caused by the lithium tablets he was taking for his bipolar. He sadly passed away in 2011. They ramped up their efforts even more after Janice's daughter, Diane, had one of her kidneys removed due to a large kidney stone. Janice, Brenda and Beryl would manage craft stalls and sell the crafts they made. Janice decorated books, jewellery, bunting and even made Easter and Christmas cards. The highlight of their fundraising career was when they organised the annual charity day at Mannington Hall, and raised £3,000 for the National Kidney Federation, a national charity that supports people living with kidney disease. "Once a year we would go to Mannington Hall, home to Lord and Lady Walpole, for their charity day," Janice said. "In 2014, Brenda organised the whole day. The hall was opened for tours, there were charity stores, tearooms and craft sales. We raised £3,000." The trio would travel around Norfolk selling their handmade crafts, venturing to Cromer Carnival and to the Virgin Lounge in Norwich, where they organised a raffle and two quiz nights. Janice came into contact with Pete Revell in 2011, when he was the fundraising manager at another charity. When Pete moved to the National Kidney Federation (NKF), they remained in touch and continued to raise money. "I have been working with these lovely ladies for nearly 10 years, we have done many events together and it has always been such a pleasure." Pete said. "Over the years I have been amazed by the amount of money they have raised. They have told me they are going to hang their fundraising hats up and take things easy and they deserve to. I would like to personally thank them for their dedication to raising funds for kidney patients, and their friendship - they are my Norfolk craft ladies and always will be." After a remarkable fundraising career, Janice, Brenda and Beryl plan to retire when they hand over their final cheque to the NKF for £1,000, to take their total to £16,000 in just 12 years. "Once we got to £16,000, we thought we better stop now!" Janice said. Watch NKF liaison officer and kidney patient Mark Davis talk to BBC Midlands Today about the support we provide. Thank you to kidney patient Shashi Matharu and BBC reporter Laura May McMullan for the interview. This was broadcast on BBC1 during Organ Donation Week on Tuesday 8th September 2020. Vulnerable Patients – Covid-19 As the government makes changes to the guidelines on shielding and protecting people who are clinically extremely vulnerable from Covid-19, people are starting to think about venturing out of the comfort and safety of their own home. The National Kidney Federation (NKF) is selling highly visible lanyards so other members of the public are aware that the person wearing this is highly vulnerable and to be considerate with social distancing. The wearer will be able to clip a small hand sanitiser on the lanyard if they wish. Andrea Brown, chief executive of the National Kidney Federation, said: “This is a very frightening time, not just for kidney patients but for all vulnerable people. There are over 2.2 million people shielding in the UK alone. We have many kidney patients phoning our helpline for advice and support and many patients comment about their fear of taking steps to venture outdoors. We are hoping that by wearing this simple lanyard and raising public awareness about them, it will help many feel less anxious about going outdoors.’’ Organ donation law change to come into effect in England on 20 May WORKSOP, ENGLAND, May 20 – From 20 May 2020, the new law will be implemented in England and organ donation will move to a system of deemed consent (or ‘opt out’), known formally as Max and Keira’s law. Under the new law, all adults in England will be considered as having agreed to donate their organs when they die unless they record a decision not to donate (known as ‘opting out’) or are one of the excluded groups. Those excluded will be people under 18, those who lack the mental capacity to understand the new arrangements and take the necessary action; people who have lived in England for less than 12 months or who are not living here voluntarily and those who have nominated someone else to decide on their behalf. Even with the changes coming into effect, families will still be involved before any organ or tissue donation goes ahead. There is no deadline for recording your decision to opt out and you are free to register your choice at any time. This new system of consent for organ and tissue donation is a significant step to helping the 5,200 people in England desperately waiting for a life-saving, or life-enhancing, transplant. Andrea Brown, chief executive of the National Kidney Federation, said: “People are dying every single day waiting for a transplant. Around 80% of those waiting for a transplant need a kidney. The National Kidney Federation have been helping to campaign for a change in the organ donation law for a very long time. The introduction of Max and Keira’s Law is such an important step forward and will transform so many people’s lives who are living with kidney disease. We speak to patients daily, who have been waiting and hoping for a change in the organ donation law, as they have been on the waiting list for a transplant for a long time. This change will bring hope to a lot of kidney patients throughout England. Alongside the commitment of public education, support from the NHS and NHS Blood and Transplant, we’re looking forward to seeing more life-changing transplants. It’s important everyone has a conversation with their families about organ donation – so your loved ones know your decision.” The COVID-19 pandemic means that the number of potential donors has been reduced. Donation is not being explored if patients have COVID-19 as the risk of transmission to recipients is currently considered too high. The simplest way to record a decision is on the NHS Organ Donor Register website. However, it is also possible to tell a friend or family member or record it in writing. Type 2 Diabetics miss out on a recommended annual kidney test which can signal irreversible damage that may lead to fatal complications, survey reveals. - https://napp.co.uk/secondary_news/type-2-diabetics-miss-out-on-a-recommended-annual-kidney-test-which-can-signal-irreversible-damage-that-may-lead-to-fatal-complications-survey-reveals/ Support the National Kidney Federation This March in Honour of World Kidney Day The National Kidney Federation is there to ensure that all kidney patients and their loved ones lead fulfilled lives with quality care and choice. In addition to our brand new #KidneysMatter campaign, in honour of World Kidney Day, this March we have teamed up with My Favourite Voucher Codes in their charity poll where we’re up for winning 20% of their monthly profits. My Favourite Voucher Codes isn’t your average voucher code website. They’re committed to helping their users save money, but they’re also committed to raising money for good causes. Since 2012, they have raised over £57,000 for hundreds of charities through their monthly poll. This March, the National Kidney Federation are delighted to be one of four charities taking part. How is the Money Raised? My Favourite Voucher Codes is home to thousands of deals from the UK’s biggest retailers, and every time a user makes a purchase through them, the site makes a small commission at no extra cost to the consumer. It’s through this that the site is able to donate 20% of their profits to one lucky charity each month. In terms of the charity poll itself, the site nominates four charities to take part, who all compete for votes by visitors to the site. This is done via social media, on site promotion and general word of mouth. As a result of this friendly competition, at the end of the month, the charity with the most votes wins the donation. How Can I Vote? Voting for the National Kidney Federation is incredibly easy and completely free to do. From the 1st March, head over to My Favourite Voucher Codes where you’ll find the poll on the right hand side. Simply select the NKF and click the red button to register your vote. You can even share the poll via your social media to encourage your friends and family to vote too. There’s no need to sign up to anything, and you don’t even have to use any codes for your vote to count. However, if you’re looking to make an online purchase, it’s worth taking a look at what deals are available, as any codes used contribute to the final amount donated to the winning charity. While World Kidney Day is on the 12th March, the charity poll is running right up until the 31st March, so there’s plenty of time for you to cast your vote and get your friends to join you. The National Kidney Federation exists solely because of donations from our generous supporters, so a donation from My Favourite Voucher Codes will help us continue our work providing support to kidney patients and their loved ones across the UK. Cast your vote today! Thank you!