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NKF In Touch Information from the National Kidney Federation Supporting kidney patients, their friends & family

Date: August 2020 Issue: SEVENTY FIVE Welcome to the NKF In Touch newsletter for August 2020. Please feel free to share with your friends, family and colleagues. If you are receiving this newsletter from someone else and not the NKF, you can contact us and request to be added to our mailing list. If you have an article that you would like sharing via the next newsletter, please forward to Fiona Broomhead fiona@kidney.org.uk by 10th September 2020.

The NKF is a non – profit making charity that relies totally on donations and sponsorship to continue supporting kidney patients across the UK with vital services and we could not continue to offer our services to kidney patients, their families and carers without your kind generosity.

We would like to say a BIG THANK YOU for your continued support.

Contents: Action Point Page Social Distancing Lanyards 2 Urgent appeal for Covid-19 plasma donations 3 Information Welcome to all our readers 4 Autumn Issue of Kidney Life 5 Reminder for KPAs 5 Organ Donation Week 6 Healthcare Travel Costs Scheme 7 Standardised Outcome in Nephrology (SONG) 8 Pamela Isbell’s story 9 NKF Helpline Vitamin D 12 NKF Fundraising Virtual events 14 Choctober 2020 14 Weather Lottery 15 Amazon Smile 15

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

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Social Distancing Lanyards

We are getting new stocks in every week and if you have not purchased one as yet for just £1, please visit the NKF online shop. The NKF has designed a bright yellow lanyard to let members of the public know 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 sanitizer on the lanyard if they wish. Thank you to everyone that has bought a bright yellow lanyard from us, in fact we have sold over 14,000 of them. We are over whelmed with the uptake of the lanyards and the positive comments we have received from yourselves. Here are some photos shared by our wearers.

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Urgent appeal for COVID-19 plasma donations now to

help trial during any second wave

NHSBT need people who’ve recovered from coronavirus (COVID-19) to donate blood plasma, as part of a clinical trial to help with the national effort against the virus.

The trial will tell how effective convalescent plasma (plasma from people who’ve had coronavirus) is for treating coronavirus patients.

NHS Blood and Transplant is now urgently appealing for people to donate convalescent plasma. They need as many donors as possible to come forward now from the first wave of infections to enable as many donations as possible to be taken now.

What is convalescent plasma?

Blood plasma is a yellowish liquid that makes up about half your blood volume. After a virus, your plasma contains antibodies that are used to help fight infection.

More than 13,000 donations have been made so far. However the number of new infections has declined since the spring, meaning fewer people are eligible to donate. Comedian Hal Cruttenden, who has appeared on shows including Have I Got News For You, Bake Off: Extra Slice, and Live at the Apollo, has donated convalescent plasma twice, after spending 10 days ill with the coronavirus. Read about his experience in donating and the NHSBT appear by clicking here.

To find out more about convalescent plasma please click here.

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WELCOME TO ALL OUR READERS Welcome to the many new readers we have this month. Our In Touch newsletter is collated by members of the NKF team to bring you news, information and appeals between the issues of our Kidney Life magazine. We hope you enjoy reading the stories we share and if you have a story you would like to share with our readers, please forward to Fiona at fiona@kidney.org.uk together with any pictures. This In Touch newsletter is just one of the services the NKF offers to its members. We now move into the 6th year of circulating news and information by our monthly newsletter, which we have feedback from members saying they find it of interest. We very much hope you do too. This is free to all members who requested email communication.

NKF also provide a quarterly magazine, Kidney Life, to many more readers both electronically and a printed version. Kidney Life. This is a FREE magazine for kidney patients keeping you in touch with the latest news, information and events and is produced four times a year. Older issues are available to view online via our website www.kidney.org.uk. Please refer to page 5 for the next issue of Kidney Life.

Another service the NKF offer is a free call Helpline. Many patients and their carers/family members contact us with concerns they may have regarding their personal situation with kidney disease. Other patients call requesting information leaflets on renal information or making enquiries about benefits. Helpline also take calls from medical professionals requesting advice. Please see page 12 for this month’s input from our helpline advisers Stephen and Pauline.

Annually we hold a patients’ event. This is a very well attended weekend, which is of interest to all concerned with kidney disease. We have a social evening on the Friday with a quiz and buffet. On Saturday, we have a full day’s programme of information, speakers on different topics, and an exhibition from various companies and service providers. Unfortunately this has been postponed this year due to Covid-19 but we

have already made reservations for October 8th – 10th 2021, make a note in your diary.

The NKF is active in getting the best for kidney patients in the UK. We have an All

Party Parliamentary Kidney Group (APPKG) who get together to campaign for better services and treatment for kidney patients. The NKF is here to represent the interests of all UK kidney patients, both present and future. We are actively involved in representing patients’ interests to the government and the media. We campaign for more and better treatment facilities, we encourage

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the public to look upon organ donation positively and we provide support services for all UK kidney patients and their carers. The NKF is the national umbrella organisation for the Kidney Patient Associations (KPAs) throughout the UK. KPAs are the members of the NKF along with their individual members. The NKF is a charity run by patients for patients and it the largest kidney charity of this kind. We are a charity that is successful because of you and your support! We could not offer all the above without your continued support. This may be purchasing draw tickets, taking part in fundraising events, shop orders and Christmas card orders and/or regularly donations. If you would like further information on how you could support the NKF, please contact us on 01909 544999 or email nkf@kidney.org.uk.

Autumn Issue of Kidney Life out now!!

Our autumn issue of Kidney Life is available to view on-line now. Read about Shaemus (featured on this month’s front cover) and how he and his family take each day as it come. Also we have a story on how David received a transplant during the pandemic. For those who receive a hard copy of the magazine, it should be arriving through your letterbox next week. If you wish to receive a hard copy please contact us at nkf@kidney.org.uk with your full name and post address and we will pop you a copy in the post.

Included in the postal magazine is our Christmas card brochure and our Christmas draw tickets. Many of our readers view our magazine on line so if you wish to take part in our Christmas draw please contact us and we will pop you some tickets in the post. With many charity events cancelled this year we need your support more than ever so please take part in our draw and be in with a chance of winning £1,500 in time for Christmas

REMINDER FOR KPAs You will have recently received details of the professional indemnity insurance. Please send your replies at your earliest convenience to ensure you have protection. Should you require further information please contact Donna Blizard on 01909 544999 or email donna@kidney.org.uk.

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ORGAN DONATION WEEK 7 - 13 SEPTEMBER Organ Donation Week is always a highlight of the year – a wonderful week of activity to shine a light on the generosity of donors and the incredible impact they have on transplant recipients, and the opportunity to education, inform and inspire people, to help save and improve more lives. From 20th May 2020, the law around organ donation in England will be changing to allow more people to pass on more organs to save more lives. Adults, over 18, covered by the change will still have a choice whether they want to be an organ donor and their families will still be involved before organ donation goes ahead. More than 25 million people are already on the NHS Organ Donor Register and all the major religions in the UK support the principles of organ and tissue donation. By adding your support, you can empower others to save even more lives in the future.

Educating young people about blood, organ and stem cell donation It is particularly important that we educate young people about organ donation, so they are aware of how the legislation will affect them when they turn 18. From September 2020, blood, organ and stem cell donation will form part of the new Health Education module within the Personal, Social, Health and Economic (PSHE) National Curriculum for all secondary schools in England (Key Stage 3 and 4, aged between 11 and 16). Whilst some PSHE teachers may be able to incorporate the new subject in their lesson planning from this September, it will not be mandatory until summer 2021, this is great news.

This year will be different as we are restricted to workshops and displays because of Covid-19 but if you are doing anything during Organ Donation week, please let us know and send us pictures for the next issue of In Touch.

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HEALTHCARE TRAVEL COSTS SCHEME (HTCS) FAO: ALL KPA CHAIRS

Many patients who are on in-centre haemodialysis treatment, and either drive themselves in, or are driven in by their partner for their dialysis treatment, claim back their mileage under the NHS Healthcare Travel Costs Scheme (HTCS). To qualify for help with travel costs under the HTCS, you must meet 3 conditions:

At the time of your appointment, you or your partner (including civil partners) must receive one of the qualifying benefits or allowances listed on this page, or meet the eligibility criteria for the NHS Low Income Scheme.

You must have a referral from a healthcare professional to a specialist or a hospital for further NHS treatment or tests (often referred to as secondary care).

Your appointment must be on a separate visit to when the referral was made. This applies whether your treatment is provided at a different location (hospital or clinic) or on the same premises as where the GP or another health professional issued the referral.

What are the qualifying benefits and allowances?

You can claim help with travel costs if you or your partner (including civil partner) receive any of the following benefits:

Income Support Income-based Jobseeker's Allowance Income-related Employment and Support Allowance Working Tax Credit (WTC) with Child Tax Credit (CTC) WTC with a disability element or a severe disability element CTC but you're not eligible for WTC Pension Credit Guarantee Credit you receive Universal Credit and meet the criteria

You can also claim for help with travel costs if:

you're named on, or entitled to, an NHS tax credit exemption certificate (if you do not have a certificate, you can show your award notice) – you qualify if you get child tax credits, working tax credits with a disability element (or both), and have income for tax credit purposes of £15,276 or less

you have a low income and are named on certificate HC2 (full help) or HC3 (limited help) – to apply for this certificate, you should complete the HC1 form: claim for help with health costs (PDF, 218kb), which is available from your local hospital, Jobcentre Plus offices or the NHS print contract order line on 0300 123 0849

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Patients who are not in receipt of a qualifying benefit, but are on a low income, and whose savings are £16,000 or less (or £23,250 or less if in a care home, or £24,000 or less if residents in Wales) may be eligible for assistance with their NHS travel expenses. The current guidance for the HTCS written by the Department of Health was issued in May 2010. The NKF believes this guidance needs updating, especially with regards to the mileage rates that are reimbursed by each Hospital Trust. We would be therefore grateful if you would kindly contact your respective Hospital Cashiers Department, to find out what the current mileage rates reimbursed are under the HTCS – and then please directly email or ring our KPA Liaison Officer Mark Davis with the information. We thank you in advance for your assistance with this important issue. Mark Davis – mark@kidney.org.uk Tel: 07931 657 111

The Standardised Outcome in Nephrology (SONG) Initiative was launched in 2014 to establish core outcomes for research (clinical trials) in chronic kidney disease, to ensure that trials consistently report outcomes that are critically important to patients, family/caregivers, and clinicians. For SONG-PD (peritoneal dialysis), we completed a systematic review, focus groups with nominal group technique, an international Delphi survey, and a consensus workshop to establish a set of core outcomes: technique survival, infection, life participation, cardiovascular disease and mortality. We are now establishing the core outcome measures for each of these outcomes to ensure these are meaningful to patients and clinicians for research and decision-making. We would like to invite you to participate in the SONG-PD workshops, which will be held online using zoom videoconference (London/UK time). The workshops will be held (UK time): W1 Life Participation 12 noon Tues 8th Sept (one hour) W2 Technique Survival 12 noon Tues 15th Sept (one hour) W3 Infection 10:30 pm Wednesday 23rd Sept (one hour) The workshop will be limited to 60 patients, family members/caregivers, and health professionals to attend. To register your interest to attend, please visit: www.songinitiative.org/song-pd-workshop/ SONG-PD Expert Working Groups for Technique Survival, Infection, and Life Participation

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MY STORY, by Pamela Isbell In 1987 I had 2 young children aged 4 and 18 months. I was always tired but just thought I needed a break. We went on holiday to Majorca where the two flights of stairs to get to our apartment just left me exhausted and I had to rest between each flight. On our return journey home my ears popped during the flight and after a couple of days with no improvement I went to my doctors and was given a course of anti-biotics. After one week there was no improvement so was given a second course of antibiotics. A week later and there was still no improvement so on the Monday some blood was taken. The following day I received a phone call to say a blood specialist was coming to see me at home. Alarm bells began to tinkle. When he arrived he suggested I go into hospital for some blood tests. I phoned Mum and Dad to come and stay to help with the children for a few days. They ended up being there for 9 weeks. I had loads of tests done, scans, bloods, and lumber punch. I was sent home to await the results but before that time arrived I was in such agony I was banging my head on the wall and pleading with my husband to get me back in hospital NOW! An ambulance came for me and as they wheeled me into the hospital ward I began to fit. Next step was to give me Plasma transfusions every day for a week, after each one I just lay on the bed shaking. My mum came to visit one day and went home and told my husband that she would look after the children but she could not bare to see me in that state. During our holiday my husband, Dave, had been contemplating applying for a new job, the closing date being the day after we returned from Majorca. Unaware of the situation then he sent off the application. On 14th August he went for an interview. I was still in hospital that day, the doctors came on their rounds and told me I was to begin dialysis immediately. When my Dad came to see me later that day I just burst into tears and said I was going to be on a machine for the rest of my life! That night I was wheeled down to the dialysis ward with neck lines fitted. At first, I used to come out of the hospital with one eye covered as I had double vision. Slowly I got used to the treatment and after three months when doing her rounds the doctor suggested a reduction of steroids as I was beginning to look like a chipmunk. Dave got the job which meant us moving to Leeds which we did in October. As Dave was now required to be away from home quite bit, we had no family support so it was decided that CAPD would be the best way forward.

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I had the usual ups and downs with an average of one case of peritonitis a year. On Friday 13th July 1990 I went to my regular clinic appointment. At around 5am the next day the phone rang and a voice said "Hello Pamela, this is the renal unit". My initial reaction was how bad could my blood results be for them to be calling me at such a time. But then I heard the wonderful words, ‘We have a kidney for you it is being flown in from Dublin’!!! All hell broke loose, bags packed, phone call to mum and dad to come and look after the children and we all arrived at the hospital by 6am. Mum and dad collected the boys about 9am after a 120 mile dash up the M1. I was finally wheeled down to theatre about 10.30pm and have never looked back. It was not common in those days to be given information about your donor which is sad in many ways. This week was the 30th anniversary of my Transplant. I had ideas of how to mark this precious occasion but Covid-19 put a halt to that. I decided to cut my hair and donate it to The Little Princess Trust to make a wig for someone who had lost their hair to cancer. I cannot donate organs but this was something I could donate. I raised money for West Riding Kidney Patients Association and Macmillan Cancer Support. I raised £910 for the KPA and £182 for Macmillan and have a certificate from the Little Princess Trust for my hair donation. I was amazed by the support I got from friends family and even people I have never met. My husband did the hair cut as we are still having to isolate. It was done in our front garden and neighbours came along to give their support. This is my story I am not a writer but this comes from the heart. I will be eternally grateful to the family who made the brave decision to donate the organs of a precious loved one. Thank you Pamela Isbell a St James University Hospital renal patient. Pamela’s hair after the cut

Hair donated to Little Princess Trust

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Information from the NKF Helpline

Telephone (free to call) 0800 169 0936

THE UK POPULATION NEEDS VITAMIN D NHS Recommendations

In April 2020 the NHS issued a statement based on the recommendations from Public Health England (PHE) that we should all consider taking 10mcg/day vitamin D as a supplement to keep our bones and muscles healthy. This advice is largely due to the restrictions imposed by quarantine and lockdown and includes pre-school children, the elderly and those at specific high risk or vulnerable groups. Facts about Vitamin D Vitamin D is called the sun vitamin, also known as cholecalciferol and is one of 13 essential vitamins that are vital for our body to function properly. It has two important functions:

Vitamin D facilitates the absorption of calcium and phosphorus from food into the intestines, through the gut wall and into the blood stream. If your vitamin D levels are too low this reduces the absorption of calcium from the gut by up to 90%. Fighting infection – vitamin D plays an important role in defending your body against infection. It helps to maintain the barrier function of your skin and helps stimulate the immune response and activates the body’s defence against bacteria and viruses.

Vitamin D deficiency affects a staggering 50% of the population. This can be due to lifestyle factors as people now work indoors for longer hours, eating habits have changed and people now have different dietary preferences. Vitamin D deficiency is more common in the winter when the days are shorter and darker. Vitamin D deficiency affects all age groups, races and different ethnic backgrounds. People with darker skin have increased amounts of melanin in their skin. This absorbs more UVB and means that they need longer hours of sun exposure than people with pale skin to produce adequate vitamin D levels.

HELPLINE

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The elderly may not go outside for long periods and often have small appetites and eat less healthily. Also older people tend to cover their skin more with clothing whilst ageing reduces the natural ability to produce vitamin D in sunlight. Obesity is known to significantly reduce the production of vitamin D3 Chronic kidney disease is also associated with vitamin D deficiency as the kidney loses its ability to convert vitamin D. Hyperparathyroidism is an overactive parathyroid gland which results in an increased breakdown of Vitamin D. Some medications also lower levels of vitamin D as they accelerate vitamin D breakdown. Dietary restrictions such as avoiding eggs, meat and fish can result in poor vitamin D intake. You should NOT take vitamin D supplements if you have :

Hypercalcaemia Severe kidney disease Kidney stones Heart disease and/or digoxin Sarcoidosis Allergy to vitamin D, or any vitamin D products Other allergies – some vitamin D drops contain peanut oil, aspartame and other substances such as food colourings and dyes. Check the product ingredients carefully.

Drug interaction : Drug interactions may occur if you take vitamin D with :

Anticonvulsants Benzodiazepines Steroids Digoxin Cholesteryramine Actinomycin Imidazole The list is no exhaustive and you should always check with your doctor or pharmacist before starting to take additional medicines.

The kidney stops converting vitamin D to its active form when down to about 40% of normal function.

Extract from New NHS recommendation – UK population needs extra Vitamin D April 2020 https://www,ioebaccessgiverbnebt,irg/new-nhs-recommendation-uk-population-needs-extra-

vitamin-d/88657/

For an information leaflet about Bones, Calcium, Phosphate and PTH in Kidney Failure Contact the National Kidney Federation

Helpline on 0800 169 0936

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Virtual events

In this very changing world we are still seeing events being cancelled, including this year’s London marathon, if you are competitive - you can still compete against others and have a medal at the end to show friends and family. One of the most popular events is the Everest Challenge, have you ever wanted to climb Mount Everest? Do you like the sound of reaching 8,848m above sea level, the highest point on Earth, at an altitude where humans are not designed to survive and where aeroplanes cruise? That sounds very dangerous, expensive and difficult to do in line with social distancing but we have a solution – a big challenge for Isolation 2020. Can you climb the equivalent of

Mount Everest in 12 weeks? In this challenge, you can go out to the hills on your daily exercise or simply tackle the stairs a couple of times every day, achieve 8,848m of elevation gain before the end isolation, and this well-earned medal can be yours! How it works: 1) Sign up to your race 2) Complete your run 3) Upload your evidence to Virtual@runforcharity.com on completion 4) Put your feet up 5) Wait for the postman to drop off your medal! For more details of this challenge and other events please visit https://www.kidney.org.uk/Event/virtual-running-events Choctober 2020 Choctober is on its way! This October we would love you to take part in our annual challenge, it’s not running up a mountain or jumping out of a plane, we just ask that you give up chocolate for the month of October, it can’t be that difficult – can it? To sign up and receive a Choctober fundraising pack please visit https://www.kidney.org.uk/Event/choctober-2020

FUNDRAISING

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We need your support This year has, and still is a challenging year for our charity with limited funds coming in, but you can help, and be in with a chance to win £25,000 by taking part in the weather lottery. It’s just £1 per week. Please visit https://www.kidney.org.uk/join-our-lottery

Amazon More and more of us shop on line and if you do, you could help us raise money by shopping with Amazon. The NKF is now one of Amazon's chosen charities and will give the charity a donation every time you shop, all you have to do is to go to smile.amazon.co.uk and pick the National Kidney Federation. It will not cost you anymore but we will receive money from Amazon when you have made a purchase. Remember, always start at smile.amazon.co.uk and Amazon will donate 0.5% of the net purchase price. Please spread the word to all your family and friends.

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