KIDNEYLIFE SUMMER 2022 ISSUE
The magazine of the National Kidney Federation
Steve Light Artist Steve Light tells his kidney related story
Charity Nos. 1106735 SC049431
News
Your stories
Health
One Year On – Home Dialysis report
Roger’s Transplant Journey
Top 10 dietary tips
Page 04
Page 13
Page 16
Editor’s Note
Welcome to the Summer edition of Kidney Life Hello, I would like to introduce myself as the new Editor of Kidney Life, a new and very exciting challenge. I am currently working as a Ward Clerk at a satellite dialysis unit in Warwickshire, so I have a great understanding of how dialysis impacts the lives of so many. I will be working hard to continue to bring insight and articles that are helpful, informative and inspiring to the readers of Kidney Life. In this issue we have an update on the ‘Increasing Home Dialysis in the Context of COVID-19 in the UK – One Year On’ report, which really brings home how improvements for those choosing to dialyse at home will improve their experience and also encourage more patients to consider this as an option. The NKF campaign 'Meeting the Cost of Home Dialysis Treatment – Together We Can’ highlights the differences in reimbursement of utility bills between NHS Trusts and the need for an urgent review. Jeremy Crane, consultant transplant and vascular surgeon shares his third and final part in the transplant journey (page 10). Patient stories from Steve and Roger give a real-life account of their journeys, which many will identify with. Also included in this issue is are reports on NKF's KPA Day and World Kidney Day. World Kidney Day was a great success bringing the kidney world into the forefront and was celebrated across the UK.
In this ISSUE... YOUR STORIES
08 Steve Light’s story 12 Roger’s journey
NEWS 04 06 07 15 16
One Year On – Home Dialysis report Home treatment reimbursement KPA Day World Kidney Day 2022 Our NKF Webinar Series continues
HEALTH
10 Part 3, the final part of a kidney transplant journey 15 Top 10 dietary tips
FUNDRAISING 17 Get involved
PUZZLES
22 Word search / Spot the difference
As always thank you so much for your wonderful contributions, we would love to hear from you if you have a story to share.
Lisa Moulsher
Novartis supporting Kidney Life
Editor
NKF OFFICERS
Registered Office: The Point, Coach Road, Shireoaks, Worksop, Nottinghamshire S81 8BW T: 01909 544999 E: nkf@kidney.org.uk
Chairman – Jim Higgins – Northants KPA Vice Chairman – Brian Child – North East KPA Treasurer – Michael Sinfield – Six Counties KPA Secretary – George Palmer – Exeter & District KPA Honorary President – Kirit Modi Patrons – Lawrence Keogh and Nina Wadia
HELPLINE0800 169 09 36
NKF officers and executive members do usually belong to a KPA, but offer their services to NKF as individuals. As such, NKF recognises that views expressed by its officers and executive members are expressed as individuals and do not necessarily represent the views of their KPA.
All CALLS to the NKF Helpline are FREE of charge
Summer 2022
A message from our Chairman Dear All,
tion Enclosed in this edition of Kidney Life you will find the 2021 National Kidney Federa . charity the of work and es activiti the Impact Report, this report gives you an overview of although 2021 continued to be a very challenging time for the NKF due to the pandemic, come to have we far how of there were many barriers that the NKF faced, we are so proud patients and carry on our lifesaving support to patients. NKF have supported more kidney a national families than ever by introducing a campaign to increase home dialysis and with all of date to up Peer Support Service for dialysis patients. NKF kept the community with Kidney the latest information regarding COVID-19 and stepped up by joining forces exercise and on-dem and online Beam, an online platform for kidney patients’ with live, classes and so much more. their With the worrying situation of the pandemic still affecting events, the NKF held r Series. KPA Day and Patients’ Event online and even introduced an online NKF Webina on advice and tips ts patien give to The webinars are chosen by the kidney community ced introdu was ge anything kidney related. In June a brand new NKF fundraising challen ‘Best Foot Forward’ and it was one of the most successful fundraisers yet. kidney There is still a sense of uncertainty and worry surrounding the pandemic for sing this patients. The cost of living crisis is impacting patients’ lives, we will be addres during 2022. the NKF can It is an unclear and difficult time for us all, vital funds must be raised to ensure continue to support and campaign for kidney patients. l– If you are in a position to be able to help us in some way, we would be very gratefu you will find a donation form on page 19. Myself and the NKF would like to thank each and every one of you for your support. Best wishes
Jim Higgins
IMPACT REPO
RT
2021
NKF Chairman
READ SHAEMU
S’ STORY ON PAG
ES 8 & 9
Jim Higgins NKF Chairman HELPLINE 0800 169 0936 | www.kidney.org.uk | Summer 2022 | 3
News & Events
Home Dialysis Campaign Increasing Home Dialysis in the Context of COVID-19 in the UK – One Year On. In September 2020 NFK hosted a webinar discussing home dialysis during COVID-19 where it was revealed that those who dialysed at home were substantially at lower risk of contracting COVID-19 than those who dialysed in hospital. The national findings on home dialysis from the Getting it Right First Time (GIRFT report) and the impact COVID-19 has had on dialysis patients. There were also presentations from patients and carers on the benefits of home dialysis was also discussed. A national campaign to increase home dialysis in the UK in 2021 was introduced, NKF published a 28-page report which included seven recommendations on how the NHS can increase dialysis provision which can be viewed here:
Analysis from home dialysis data from 2020 provided by the UK Renal Registry showed centres with less than 20% (which is the UK target) of their dialysis patients that were dialysing at home, there is a long way to go before this target is reached in all centres. Analysis using the ethnicity of patients is also set out in the report. The overall progress of home dialysis from this data is disappointing. The NKF’s view is that this is the impact of COVID-19 on renal services, staffing challenges faced by the NHS and the impact of training staff and new patients. However, there is a great deal of support within the renal community to increase and improve the provision of home dialysis.
https://www.kidney.org.uk/recommendationsof-the-2021-home-dialysis-report The home dialysis campaign consisted of engaging on a national level with patients, government, representatives of the Renal Services Transformation Programme (RSTP), The UK Kidney Association (UKKA), Kidney Quality Improvement Partnership (KQulP) and renal Industry Partners. At a local level engaging with Clinical Directors of renal services and chairpersons of Kidney Patient Associations (KPAs). A home dialysis survey of kidney patients was also undertaken by the NKF in partnership with the University of Hertfordshire. A national Home Dialysis Peer Support Service for patients and carers has been established and a leaflet on home dialysis has been published.
INCREASING HOME DIALYS IS IN THE CONT EXT OF COVID19 IN THE UK – O NE YEAR ON
The full report and its findings one year on can be viewed at https://www.kidney.org.uk/home-dialysis-
campaign#Report
The purpose of the report is to share details about the campaign, to urge the kidney community to take further action and to share details of the NKF campaign for 2022.
4 | Summer 2022 | www.kidney.org.uk | HELPLINE 0800 169 0936
March 2022 Part 2
Summer 2022
The purpose of the report is to share details about the campaign, to urge the kidney community to take further action and to share details of the NKF campaign for 2022.
NKF launched its Home Dialysis Peer Support Service in 2021. The service is providing much needed support with a new patient information leaflet being published – ‘A COVID-19 Perspective on Home Dialysis’. Outcomes of surveys by NKF and the University of Hertfordshire are also shared with the impact of COVID-19 on home dialysis. The report has input from RSTP which is aiming for the delivery of best practice and reducing variation between units. COVID-19 has brought home dialysis to the forefront of our thinking as this has allowed home dialysis patients to receive treatment in the security of their own homes. However, this is not simply about COVID-19, home dialysis is a real and meaningful choice for those who wish to explore it. There are details of KQulP who launched a home dialysis improvement project DAYLife in 2019, which is a collaboration between the main players in the field. Responses from Clinical Directors, Department of Health and Social Care and the devolved governments show positive responses to the report.
The report shows the steps that need to be taken and the progress being made to increase the awareness, the service delivery and the great advantages of home dialysis. With the implementation of the findings of this report it's future looks great. NKF will report back on the outcomes of the report and how it is being implemented. Following the publication of this report we have received more data from the Renal Registry. The analysis shows the rate of home dialysis for patients on kidney replacement therapy at the end of 2020, across quintiles of deprivation. The quintiles are defined using the country-specific indices of multiple deprivation. Neighbourhoods within each country are ranked from most to least deprived based on the country-specific index. These ranks are used to group the neighbourhoods into quintiles separately for each country. Deprivation data was not available for patients treated at Scottish renal centres. For further information and full data list, please visit
https://www.kidney.org.uk/home-dialysiscampaign
The 2022 campaign realises that COVID -19 has had a significant impact on kidney patients and NKF has optimism that the 20% target of patients on home dialysis can be achieved. NKF would like to thank everyone involved in this report, full acknowledgements are in the online report.
HAVE YOUR SAY Have you got something important to say?
Please share your thoughts and comments by emailing nkf@kidney.org.uk
HELPLINE 0800 169 0936 | www.kidney.org.uk | Summer 2022 | 5
News & Events
Meeting the Cost of Home Dialysis Treatment –
Together We Can
Unfortunately many of us are more than familiar with the surge in utility prices that came into place back in April this year. To combat this the NKF stepped up to voice their concerns for home dialysis patients. Home dialysis should be a freedom of choice for patients to have their treatment within the comfort of their own home and to be reimbursed suitably to cover the costs of lifesaving treatment. With a nationwide NKF survey that took place in early 2022, large discrepancies came to light with regards to the reimbursement of utility charges for patients who dialyse at home. Therefore, the NKF took a stand to launch the ‘Meeting the Cost of Home Dialysis Treatment – Together We Can’ campaign. If patients could still afford to dialyse from home it would save the NHS a substantial amount of money, instead of an influx of patients returning to in-centre dialysis as they could no longer afford their treatment at home.
6 | Summer 2022 | www.kidney.org.uk | HELPLINE 0800 169 0936
A letter from NKF Chief Executive, Andrea Brown, has been sent to the Chief Executives of NHS Trusts, a copy of the letter has also been sent to the members of the All Party Parliamentary Kidney Group, Chairs of Kidney Patient Associations and Clinical Directors of Renal Services with an urgent request to review reimbursement for kidney patients who dialyse at home. For more information on the campaign and how you can help take a stand to support this move, please visit:
https://www.kidney.org.uk/meetingthe-cost-of-home-dialysistreatment-together-we-can
World Kidney Day 2022 Summer 2022
World Kidney Day 2022 It’s the topic that’s too BIG to ignore! World Kidney Day which took place on Thursday 10th March 2022, is a worldwide annual event. The event is one of the biggest events of the renal world. It highlighted just how big an issue kidney disease is and how it affects one in ten people worldwide. It not only affects those with the disease but also family, friends and carers too. Awareness of kidney disease is vital in moving forward and World Kidney day was a chance to get everyone involved and help us get kidney awareness The day was led by the Kidney Charities Together on the radar. Despite still being in the midst of Group which are: COVID-19, we still had a chance to celebrate this National Kidney Federation very important day. Kidney Care UK NKF would like to thank all those who shared their Kidney Research UK stories, pictures and all the other ways they showed Polycystic Kidney Disease (PKD) Charity their fantastic support. UK Kidney Association (UKKA) Please enjoy the pictures of how the day was Kidney Wales celebrated!
HELPLINE 0800 169 0936 | www.kidney.org.uk | Summer 2022 | 7
Your NewsStories & Events
Steve Light Steve Light was born in 1982 in Tunbridge Wells, Kent and grew up in Marlborough as a shy child, happy in his own company and losing himself in drawing from an early age. Steve now living in Swindon is a figurative and portrait artist having displayed his art work in many exhibitions using materials such as acrylics, watercolour, oils and marker pens. His work expresses the diversity of people, their stories and the problems we all share and indeed the quirks we all have or inherit too. His very interesting pieces are centred around body insecurities and health issues mostly CKD related, but all have the real message of hope and how important it is for kidney patients to express themselves in many varied ways. Steve’s first diagnosis came completely out of the blue after a random blood test for cholesterol and was told his kidneys were working at 30%. To be told this at a young age didn’t really affect Steve particularly as he had no symptoms even through his year on dialysis in 2009-2010. In December 2010 the phone call came to say a donor had been found – how amazing and shocking too! After multiple phone calls to Steve’s girlfriend (now his wife) he was asked to attend the hospital immediately.
Within 12 hours Steve had a new kidney and was in recovery starting a new chapter in his life with feelings he couldn’t begin to process. Amazingly within four weeks after recovery he was back at work as a freelance web designer. A wonderful life than started being able to do the things others could do. What followed was completing a 5k and 10k charity run, achieving a blue belt in Kung Fu, being able to holiday abroad and the icing on the cake was marrying his wife, Samantha in 2017. Life was getting back to some sort of normality. Four years later Steve began feeling out of breath and contacted his GP thinking asthma was the cause. The news came that the kidney transplant was staring to fail after 11 years which is the average time a kidney from a deceased donor lasts.
I started feeling weaker and weaker over the coming months and gave up my hobbies. Going from being relatively fit to not being able to walk came as a shock for me. Speaking to my psychologist really helped me gain perspective and the resilience to push through.’
Steve and wife Samantha
8 | Summer 2022 | www.kidney.org.uk | HELPLINE 0800 169 0936
Summer 2022
Gradually Steve found the strength and energy to once again paint and decided his first portrait would be based on a photo; one he took during one of his first dialysis sessions.
Steve’s health deteriorated due to spending much time in bed and suffering from nausea and low energy. Even through these times Steve held onto the hope that one day he was going to paint something to show his journey which amazingly he has gone onto do this and so much more. Finding the first sessions exhausting and emotional is something all dialysis patients will identify with, and the travelling a 90-minute trip to his unit in Swindon added to his exhaustion. Gradually Steve found the strength and energy to once again paint and decided his first portrait would be based on a photo; one he took during one of his first dialysis sessions. ‘I am hoping this reveals a sensitive side as an artist, a vulnerable side. Being able to expose the tough times through my art will hopefully uplift others, or at least provoke some kind of reaction that leads to a positive reaction of reflection.’ We see an extremely vulnerable but strong man who has drawn from his experiences in a way that has made a difference and will continue to do so. Steve's message is ‘we don’t all have to paint a portrait but need to be able to find a way to let feelings out; be it read a book, or watch a film you have been putting off, or even draw. Steve’s artwork can be seen at www.slartme. We recommended you have a look at Steve's website, we are sure you will find something that touches or inspires you.
If like Steve, you have a story or thought to share, please email us, as we would love to hear from you. kidneylife@kidney.org.uk
HELPLINE 0800 169 0936 | www.kidney.org.uk | Summer 2022 | 9
| A transplant surgeon’s perspective News & Events Health
PART THREE of a kidney transplant journey
AFTER MY KIDNEY TRANSPLANT - WHAT TO EXPECT By Jeremy Crane
This is part three in the series and we now look at what to expect once the transplant procedure is over and you have a new kidney. Some kidneys will work straight away and kidney function improves dramatically. This is of course the ideal. However, many newly transplanted kidneys go through a phase of what we call ‘delayed graft function’. This could last a few days or even many weeks. In this period as long as the kidney has a good blood supply then we don’t worry too much. Nevertheless, there might be reasons for this delayed function which can be treated and so occasionally a kidney biopsy is performed. This is a procedure under local anaesthetic and a small piece of your new kidney is extracted and examined under the microscope. It is a good way of ruling out rejection, viral illnesses and other issues that might affect the function of the kidney.
After the transplant you might find that there is lots of swelling (oedema) around the legs and groin area. This normally settles as the kidney starts passing good amounts of urine. For a straightforward transplant a hospital stay might be seven to ten days but if there are complications or if the transplant team prefer to keep an eye on you, as described above, the hospital stay might be up to a few weeks. This doesn’t mean however that you won’t leave hospital with a good functioning kidney.
10 | Summer 2022 | www.kidney.org.uk | HELPLINE 0800 169 0936
When we join the ureter of the kidney to the bladder during the transplant, to enable the urine to drain out normally from the new kidney, we place a ureteric stent. This is a plastic tube placed in the transplant ureter to maintain good drainage of urine. This will need to be removed a few weeks after the transplant via a small operation using a cystoscope. Most centres perform this three to six weeks after the transplant as a day case procedure under local anaesthetic. Once the kidney function is stable, overall you will feel better in yourself with more energy and hopefully gradually getting back to all the activities you would like to do that possibly dialysis stopped you doing. For those that have been on dialysis for long period of time, having a kidney transplant can be a transformational and a transitional experience. Often great friends are made on the dialysis unit, and it has become a framework of life and in fact, some might miss their dialysis unit despite that seeming counter-intuitive. Having a transplant is moving into a different phase of lifestyle and each transition is different and sometimes takes a while to adjust to. Feelings of being a little unsettled after a transplant can be normal and settles down. After a transplant, to ensure that your body accepts the new kidney and doesn’t reject it, you will start on longterm immunosuppressant medication. These medications dampen down the immune system. The ward pharmacist and nurses will explain to you how to take these medications and when to take them, so you feel ready when you leave the hospital. You might also start new medications such as antibiotics and anti-viral medicines. When you leave hospital, you will attend clinic appointments very often in the first few weeks, sometimes twice a week which will taper off as time goes by and your new kidney settles in. Your kidney function will be monitored very closely at these appointments. After a few weeks, you will only need to attend every few weeks and then every few months if all is going well.
Summer 2022
Jeremy Crane MD FRCS (vasc) Consultant transplant and vascular surgeon at the Hammersmith Hospital West London
The immunosuppression medication puts you at a slightly higher risk of certain cancers. Please attend all cancer screening programs that the NHS provide and any new skin changes that you might see, discuss with your doctor. It’s important to emphasise that the risk of getting cancer is still small but is slightly higher than the general population. There is also an increased chance of catching certain infections when taking immunosuppression medication. Most commonly these are chest and urine infections. Serious infections are rare but most of these infections can be treated fully with antibiotics. It is also important to have the flu vaccine when offered (this is not a live vaccine as we wouldn’t recommend taking live vaccines). In the week’s months and years after the transplant, if you don’t feel well, have a low threshold for contacting your local transplant team or pitching up to your local transplant unit where you can be investigated and looked after. Symptoms such as a high temperature, feeling sweaty and shivery, diarrhoea and vomiting, shortness of breath, chest pain, general fatigue, pain over your transplant or passing less urine than normal are indicators that you should get checked out. After a kidney transplant many patients want to pass on their tremendous gratitude to their donors’ family. A letter can bring great comfort to the family of the donor who have been through a tragedy. Please speak to your transplant team to find out how you can write this letter. It’s a poignant and lovely thing to do, expressing how, as a transplant community of clinicians and patients, we certainly don’t in any way take for granted the selfless and brave gifts that allow new leases of life to be lived to the full. Overall, it is important to look after yourself, take the medication as described above, eat and sleep well and if you are a smoker think about giving up! Hopefully the transplant will allow you a decent quality of life that you can enjoy and benefit from in the fullest way possible.
Overall, it is important to look after yourself, take the medication as described above, eat and sleep well and if you are a smoker think about giving up! Hopefully the transplant will allow you a decent quality of life that you can enjoy and benefit from in the fullest way possible.
Keep in touch @JeremyCraneMD www.transplantandvascular.com
HELPLINE 0800 169 0936 | www.kidney.org.uk | Summer 2022 | 11
NewsStories & Events Your
Roger’s
Transplant Journey Roger aged 73 from Devon shares with us his transplant journey when a donor came out of the blue. He also shares with us a special card from a friend sent following his transplant that he will treasure forever which perfectly describes Roger's experience. In the summer of 2018 Roger was preparing for his 70th birthday to welcome the whole family for a barbecue. He was feeling unusually tired but put this down to the stress of wanting everything to be perfect for his celebrations. A couple of weeks after the party, Roger's wife Marion (a retired Registered General Nurse) showed concern as to why Roger was feeling so tired and suggested he visit his GP for a routine blood test which he did. Following the blood test, Roger had a call from his GP saying it wasn’t the birthday build up that made him tired, it was because he was anaemic. Half an hour later Roger received a further call from a doctor saying his creatinine level was 570 and was asked if he could attend the Royal Devon & Exeter Hospital that evening. This is the first time Roger had the realisation that his kidneys were failing, he was diagnosed with Vasculitis which was causing the failure. This understandably came as a complete shock as 13 months earlier Roger's blood tests were completely normal. This was the start of a very difficult and emotional time.
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‘Over the next three months I was admitted to hospital three times, once after collapsing in the garden and being blue lighted to hospital. With my haemoglobin level down to six I was given a blood transfusion; this transfusion stabilised my blood level. My creatinine level remained between 400 and 500 mainly due to the medication I was taking.' Roger’s consultant told him due to his age the expected time to receive a transplant would be up to four years. He was given the choice of haemodialysis, peritoneal dialysis, palliative care or a live donor. Roger chose peritoneal dialysis so a peritoneal tube was inserted ready for when it was needed. Roger and his family had to prepare themselves for dialysis and all it entails. Roger's wife Marion and daughters Naomi and Nicola found out they were not the correct blood group to become donors, but unbeknown to any of the family, Roger's son in law Matthew, went to his GP and found he was the right blood group. Matthew asked Nicola the unexpected question ‘do you think your dad would have one of my kidneys?’ Nicola was completely taken by surprise and Roger became very emotional when they asked him as this gave him a second chance and of course he said ‘yes'. Matthew was giving his father-in-law a chance many don’t get, a truly wonderful act.'
Summer 2022
In 2019 we began the hopeful but scary process and after blood tests, and a psychiatric assessment, it was found that Matthew and I were compatible and while not a perfect match the consultant at Exeter and the team at Southmead, Bristol decided it was worth the operation and a tentative date was set for January/February 2020. However, at the request of Matthew the transplant was carried out on 19th December 2019.
‘The operation was a great success for me. (my creatinine level dropped from 500 to 99 overnight!) and I was discharged and home on the 23rd December, this was to be my best Christmas present ever.' Matthew had a few complications and was quite poorly, but managed to be home on 24th December and is now fully recovered'. What a fantastic Christmas for the whole family. Despite being on tablets for the rest of his life, Roger says ‘it’s a small price to pay for a second chance.' In hindsight with COVID-19 rearing its ugly head early in 2020 it gave Roger the chance to shield and recover properly.'
Roger expresses his heartfelt thanks firstly to Matthew for his selfless act and also the renal team at the Royal Devon and Exeter Hospital and the surgical team at Southmead Hospital Bristol for their excellent care. Roger has been given the chance of a new life and after his transplant received this very special card from a friend which perfectly sums up his journey.
HELPLINE 0800 169 0936 | www.kidney.org.uk | Summer 2022 | 13
NewsHealth Your & Events
10 Top
Dietary Tips We have put together ten top tips to help with your diet, some which you may not be aware of.
1 2
3
4
Avoid adding salt, or alternatives such as Lo-Salt in cooking and at the table.
5
Reduce intake of processed foods e.g. sausages, burgers, fishcakes and Quorn and try to cook from fresh where possible to avoid additional additives.
6
Eat a variety of foods from the five food groups: Fruit and veg, starchy foods, dairy, protein and fat to ensure a wellbalanced diet.
7
Aim for at least five portions of suitable fruit and vegatables a day. The following are kidney friendly and although may have a high water content do not count as part of fluid allowance: Apples, Blackberries, Cherries, Grapes, Peaches, Broccoli, Cabbage, Cauliflower and Lettuce
8 9 10
Try to eat regular meals and think of a meal plan to not only stay within your renal diet but also fit round your treatment. Your renal dietician can offer advice. Experiment with different types of herbs and spices to flavour food: All spice, Basil, Bayleaf, Chives, Cumin, Caraway are all safe for CKD patients. If you drink alcohol please drink in moderation. Maintain a healthy weight – your dialysis medical staff can help with this. Limit chocolate, Ovaltine, Horlicks and instant Latte/ Cappuccino. Drinks containing powdered milk will raise your Phosphate levels. Most importantly enjoy your food.
The NKF offers a cook book on healthy eating called Taste, which is available to buy at https://www.kidney.org.uk/shop/nkf-cook-book
14 | Summer 2022 | www.kidney.org.uk | HELPLINE 0800 169 0936
Summer 2022
Kidney Patient Association (KPA) Day
2022
This year's virtual KPA day was held on Saturday 9th April and was attended by KPA representatives and patients from across the UK. The day included latest KPA news and speakers from the renal world sharing new developments and interesting updates. GUEST SPEAKERS INCLUDED:
NKF Chairman – Jim Higgins Chair of the KPA Support Group – David Coyle NKF Honorary President – Kirit Modi NKF Helpline Advisor – Stephen Emmerson Renal Service Transformation Programme guests – Neil Ashman, Ahmad Saleem Ullah and Nitin Kolhe. NKF would like to thank all of the above speakers for presenting at the 2022 KPA Day. If you were unable to attend on the day, a video recording of the event is available on line at www.kidney.org.uk/kpa-day.
KPAs
David Coyle spoke about the NKF working group and what existing and new support the group will bring to the KPAs. David also discussed recent activity that has been happening with KPAs, including setting up regional KPA forums and webinars.
RENAL SERVICES TRANSFORMATION PROGRAMME (RSTP)
An update on the programme was given by Neil Asman, Ahmad Saleem and Nitin Kolhe on the need to improve patient experience and the benefits the RSTP bring to renal services.
PEER SUPPORT UPDATE
Stephen Emmerson, NKF helpline advisor gave an update on how the Peer Support services, set up in 2021, has been growing, the increase in peer support volunteers and the patients using this service.
HOME DIALYSIS CAMPAIGN
An insight was given by Kirit Modi, Honorary NKF President into the home dialysis campaign including the One Year on report (see page 4-5).
NKF AGM
The 2022 AGM was an important part of the day, during the meeting the following NKF officers and committee members were elected:
OFFICERS
Chairman –Jim Higgins – Northamptonshire KPA Vice Chairman – Brian Child – North East KPA Secretary – George Palmer – Exeter & District KPA Treasurer – Michael Sinfield – Six Counties KPA
EXECUTIVE COMMITTEE MEMBERS
Ross Aird – Lister Area KPA Caryl Bryant – Royal Free KPA Peter Constable David Coyle – Manchester Royal Infirmary KPA Kevin Lim Tarsem Paul – Lister Area KPA Nii Plange – Royal Free KPA John Roberts – Hope KPA Alan Wells Kirit Modi will continue as NKF honorary president.
HELPLINE 0800 169 0936 | www.kidney.org.uk | Summer 2022 | 15
News & Events
Our NKF Webinar Series continues... As an NKF supporter you may be fully aware of our webinar series that started at the end of last year. They have been a great success! Our bi-monthly webinars are chosen by patients for patients.
So far, we have covered… Healthy Eating for Your Kidneys
Vascular Access
Hosted by Kidney Dietitian and member of the Renal Nutrition Group, Joanna Pulman.
Opened by NKF Chief Executive, Andrea Brown, there was an introduction from Brendan ClarkeSmith MP, follwed by four speakers, Vascular Access Clinical Nurse Specialist, University Hospital of Wales, Clare Porter, Kidney Transplant and Vascular Access Consultant, at Churchill Hospital Oxford, Dr James Gilbert, Consultant Interventional Radiologist, at University Hospitals Birmingham NHS Foundation Trust, Dr Rob Jones and dialysis patient, Mr Norman Harding. The webinar was open to patients and healthcare professionals. Speakers explained what vascular access is, the treatment choices that are available and a patient’s view during renal treatment.
Help – I Need Somebody, Help A mental health webinar hosted by Renal Counsellor, Sharon Byrne and Chair of the Renal Psychological Therapist Group and Renal Social Worker Margaret Eyre.
Keeping Active with Kidney Disease Hosted by Consultant Renal Physiotherapist at King's College Hospital and Co-President of the UK Kidney Association, Sharlene Greenwood, Specialist Renal Physiotherapists at King’s College Juliet Mayes and Jakob Krampikowski.
We also have plenty more webinars coming up – stay tuned for updates! If you would like to view one of our previous webinar event recordings above, please visit our web page here:
https://www.kidney.org.uk/Event/nkfwebinar-series
16 | Summer 2022 | www.kidney.org.uk | HELPLINE 0800 169 0936
Fundraising Summer 2022
GET INVOLVED
There are many ways you can make a difference and raise money to support kidney patients across the UK.
WATER CHALLENGE
Thank you to everyone that took part in the challenge! We are collecting the sponsor money and will reveal the grand total in next months In Touch newsletter and on our website. Please email nkf@kidney.org.uk to receive In Touch.
2022 Spring DRAW Are you a lucky winner? The draw took place on Weds 4th May and all the winners are published on our website: https://www.kidney.org.uk/nkf-draw
Put your Best Foot Forward this summer for kidney patients
SIGN UP
NOW
This June, we want you to walk, run or dog walk 60,000 steps to raise vital funds for kidney patients. The challenge can be done over the whole month, a week or even a day! The 60,000 steps represent the 60,000 people in the UK who are on dialysis or have received a kidney transplant.
To sign up go to: https://www.kidney.org.uk/ Event/best-foot-forward-2022 or contact us on 01909 544999
The first 50 people to sign up and setup a JustGiving page will receive a free NKF pedometer to help you count your steps
Fancy getting involved in one of our fundraising events?
Check out www.kidney.org.uk/pages/events to see the full selection. If you fancy taking part in an organised run (anywhere in the UK) we can secure your place. For details of events or fundraising in general contact Pete on 01263 722287 or email pete@kidney.org.uk HELPLINE 0800 169 0936 | www.kidney.org.uk | Summer 2022 | 17
News & Events
SAVE THE DATE! 15.10.22
Annual Patients' Event 2022 We asked… you spoke… the event will be online again this year… The NKF are delighted to invite you to join us for our annual patients' event on Saturday 15th October 2022 (10am–2pm). Last year our online Patients’ Event was a major success, with a variety of guests, including professional and patient speakers. This year we will continue to have our event online, from a survey circulated in the last issue of Kidney Life, you decided that we should make the day an online event again this year, due to COVID-19. We aim to bring this event back face to face again in 2023. We have a variety of guest speakers lined up for you, which we will announce in due course. Make sure you save the date and keep your eyes peeled for further announcements! As usual, we will have lots of information about the kidney world and there will be opportunities to talk with other kidney patients and kidney specialists. Keep checking our website and social media for information on how to register.
www.kidney.org.uk
@KidneyNKF
18 | Summer 2022 | www.kidney.org.uk | HELPLINE 0800 169 0936
@NKF_UK
@nkf.uk
PICK UP THE PHONE
TO GIVE YOUR SUPPORT The National Kidney Federation (NKF) relies entirely on your support and donations to continue its vital work supporting kidney patients and their families. A regular donation from you will help support every kidney patient in the UK £20
Helps us with printing and postage costs to distribute our free of charge Helpline leaflets £10
Helps towards our campaigning to increase patients on home dialysis
£5
Helps us make Government changes in Parliament
£2
Covers the cost of your Kidney Life magazine
YOUR CALL HELP MAKEWILL DIFFERENC A E!
WAYS TO DONATE:
By Post
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Donate online
You can call us on 0800 169 0936 for a chat and to make a donation.
Or visit www.kidney.org.uk/donate
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If you are a UK taxpayer your donation will be worth 25% more at no extra cost to you.
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National Kidney Federation The Point, Coach Road, Shireoaks, Worksop, S81 8BW
Yes – I am a UK taxpayer and would like to Gift Aid my donations now and in future. I understand I must pay enough income tax and/or capital gains tax each tax year to cover the amount of Gift Aid that all charities and community amateur sports clubs claim on my donations in that tax year, and I am responsible for paying any difference. I will inform you if my tax status, name or address change or if I wish to cancel my Gift Aid declaration.
Charity Nos. 1106735 SC049431 Company No. 5272349 Registered in England & Wales
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News & Events
Kidney Patients Dialysis and Transplant Cards HELPLINE from the NKF Helpline 0800 169 09 36 The NFK have designed dialysis and transplant patient cards to keep in your purse or wallet to alert paramedics, doctors and nurses in an emergency letting them know you are a kidney dialysis patient or a post kidney transplant patient and to take care. The dialysis cards on the front have spaces to put your name, hospital and a hospital contact number, on the back there is information on where your access, fistula, Vascular Catheter or a PD catheter is positioned to alert paramedics, doctors and nurses if bloods need to be taken. The transplant cards on the front also have spaces to put your name, hospital and a hospital contact, on the back of the card is a list of do’s and don’ts if a patient is admitted to hospital. Linda and Stephen from the NKF Helpline have had a busy few months posting out dialysis and transplant card orders to patients and hospitals. ‘We want to say a massive thank you to everyone who has ordered them.' ‘Over 10,000 dialysis cards have been distributed from the NKF Office to renal units and patients around the UK. We have also distributed over 5,000 of the transplant cards.’ These cards are being offered to dialysis and transplant clinics but if you would like one sending free of charge in the post, please email helpline@kidney.org.uk with your name and address or contact the Helpline on 0800 169 0936. Both the cards are still in stock.
Feedback we have received about the cards: Dialysis nurse 'These dialysis patient cards will be brilliant for our patients.' Transplant patient 'Thank you NKF for producing and providing these - I think they're a fantastic idea.' Renal Unit 'Thanks for sending the dialysis patient cards so quickly! The patients love them.' Satellite Unit 'What a great idea these dialysis patient cards are! We would love to order a hundred for our patients.' Parent 'Please can I order a transplant card for my son, he is at University and this card will very useful for him to carry around.' The NKF helpline is the only free UK helpline dedicated to kidney patients with two fully trained experienced advisors. Open from 9am until 5pm Monday to Friday. Support can also be accessed through our Peer Support service which gives support to patients, families and carers either on or considering home dialysis.
Our advisors Stephen and Linda are waiting to help you on 0800 169 09 36.
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www.kidney.org.uk
Supported by
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www.kidney.org.uk 20 | Summer 2022 | www.kidney.org.uk | HELPLINE 0800 169 0936
Don’t
Summer 2022
Have a great holiday in the stunning Lake District whilst letting Lakeland Dialysis cater for all your haemodialysis needs in a relaxed and professional atmosphere. Situated in the Western Lake District, adjacent to the market town of Cockermouth we have been specialists in holiday dialysis since 2004. Regulated by the CQC we pride ourselves in offering: personal and professional care, individual appointment times, disabled parking and ground floor access. Treatment costs are met by the NHS For a booking enquiry or more information please contact us on 01900 822 888 e-mail info@lakelanddialysis.co.uk or look at our website www.lakelanddialysis.co.uk where you can access patient recommended accommodation as well as details of our own 4-6 berth static caravan which is situated on a quiet local park and only available to book for patients visiting the clinic.
HOLIDAY DIALYSIS IN NORFOLK Quiet, friendly, 2 bedded unit established 2011 Very experienced staff NHS funded Close to the beautiful Norfolk coast Covid precautions in place
TEL: 01485 545719 info@norfolkdialysis.co.uk www.norfolkholidaydialysis.co.uk
HELPLINE 0800 169 0936 | www.kidney.org.uk | Summer 2022 | 21
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22 | Summer 2022 | www.kidney.org.uk | HELPLINE 0800 169 0936
Go to www.d.holiday or scan the QR code to the left to browse your next holiday destination
Your adventure starts here! Book your holiday dialysis treatment in just 3 steps
Enter your destination and select the dates you wish to travel
Apply filters to your search, including treatment options, specific medical requirements and desired facilities
Select your clinic, register and book your slot (availability confirmed within 72 hours)
Explore clinics in our most popular holiday destinations Andalusia, Spain
Puglia, Italy
Caiscais, Portugal
orange Q2 dHOLIDAY adv .indd 1
19/4/22 1:11 AM
Carefree dialysis holidays in beautiful Mykonos!
Expert Nephrologists and Dialysis Nurses 24/7 Medical Support Baxter – Artis Physio Plus – Dialysis Machines Accepting EHIC/GHIC card
SEA DIALYSIS | Mykonos, Greece T: +30 22890 27350 | E: info@seadialysis.com | www.seadialysis.com
/seadialysis
Put your
best foot forward this June
Walk, run or dog walk 60,000 steps to raise vital funds for kidney patients To sign up please visit
kidney.org.uk/Event/best-foot-forward-2022 or call 01909 544999 The first 50 people to sign up and setup a JustGiving page will receive a free NKF pedometer to help you count your steps
www.kidney.org.uk NKF is a registered charity in England and Wales 1106735 In Scotland SC049431
