EDKPA Newsletter Winter 2020

Exeter and District Kidney Patients’ Association

Winter 2020 issue In this edition . . . Editorial 2 Meet our latest committee member 3 You write... 4 Citizens Advice Exeter 5 Diet and COVID-19 6 NHS advice on COVID-19 8 The Art of Lockdown 10 Kidney Kitchen ~ Christmas Log 12 Christmas Carols for medical conditions 14 Christmas Humour 15 Renal Unit Services 16 NHS Peer Leadership Programme 17 Renal Young Adult & Transition Service 18 Kidney Care UK Report 20 Dialysis Action UK 21 Some more Tommy Cooper-isms ... 22 Christmas Quiz 23 Need Support? 24 What does the EDKPA do for you? 25 Subscription details 26 Join us! 27 Your EDKPA ~ who are we? 28

A cold and frosty morning over the River Stour near Sturminster, Dorset ➙ Visit our website at A PERFECT DAY http://www.edkpa.org.uk Daytime draws towards its close The EDKPA newsletter is provided by Shadows steal across the sky; Exeter and District Kidney Patients and its members. It is for information purposes Dusk now gathers in its cloak, only. It should not be a substitute for professional medical advice, examination, Lilac mists and night owl’s cry. diagnosis or treatment. ELIZABETH GOZNEY EDKPA Newsletter — Winter 2020 edition Editorial

Hello and welcome to our Christmas edition of the Exeter & District Kidney Patients’ Association’s Newsletter 2020. As usual at Christmas we have included a few more jokes than our other editions to help cheer us up, which I think we all need, particu- larly this year. Who isn’t suffering from a bit of Covid fatigue and who isn’t looking forward to the time when we can get back to “normal” again? As I write this we have just been "released" from the second lockdown and are now trying to understand the new rules and regulations of Tier 2. It’s important to remind ourselves that Covid remains with us and that it’s still essential to be vigilant. “Hands– Face–Space” ~ I’m not sure if anyone !nds this slogan useful, but the principles behind it are sound and are backed by scienti!c and medical advice. If you are unsure about your own position you should of course speak to your medical team. Gov.uk and the Kidney Care UK websites are regularly updated and the best place to look if you’re on the internet. Alternatively if you want to speak to someone in person the NKF free helpline (tel. 0800 169 0936) is always available during normal of!ce hours. Meanwhile the new digital patient record system was duly intro- duced at the RD&E on 10th October 2020. This means that up-to- date blood results are no longer available on Patient View. I know many of you will be disappointed by the delay in results being posted on the new Patient Portal (I know I am), but this is something we have raised with the Renal Department, so they know it’s a problem. It is early days yet and hopefully things will improve ~ I’m sure that in the end we’ll all get a much better service. As 2020 draws to an end, with all the pain and deprivation that came with it, we should still remember that we have the bene!t of nature. We all live in a beautiful part of the world and we should take advantage of this. I know it’s easy to say we should all take more exercise (and we should), but it’s not always easy when you’re feeling lousy as a result of kidney disease. However, even

2 EDKPA Newsletter — Winter 2020 edition ten minutes outside every day can make a big difference. Listen to the birds, watch the wildlife, enjoy the beauty of the sea and the ever changing clouds as they pass by. It’s certainly one of the things that I will associate with 2020 and in particular the birds and butter"ies that visited my garden this summer. When asked if you are a ‘glass half full’ or a ‘glass half empty’ person, perhaps the best answer is that you’re just pleased to have a glass to drink from! But I remain optimistic for the future. I’m sure 2021 will be better than it’s predecessor. There are a number of promising vaccines that look likely to be available shortly and they’re even working on a new drug to help give protection to NOT EVERYTHING people whose immune systems are suppressed. IS CANCELLED . . . ✓ Sunshine is not cancelled Christmas this year will be ✓ Love is not cancelled different, but let’s celebrate it as ✓ Relationships are not cancelled best as we can within the rules in ✓ Reading is not cancelled the knowledge that next year is ✓ Naps are not cancelled going to be much better! ✓ Devotion is not cancelled ✓ Music is not cancelled From everyone at EDKPA, we wish ✓ Dancing is not cancelled you a very Happy and Healthy ✓ Imagination is not cancelled Christmas and New Year ✓ Kindness is not cancelled (and keep washing your hands!) ✓ Conversations are not cancelled ✓ HOPE is not cancelled George Palmer, Chairman EDKPA

Meet our latest committee member

Chris Rolfe has recently joined the committee of EDKPA. Chris is presently a haemodialysis patient in the Torbay unit. Since retiring from partnership in Pricewaterhouse- Coopers, he has been the Honorary Treasurer for the Juvenile Diabetes Research Foundation and more recently a Trustee at Kidneycare UK. Chris has a wide range of interests, including silversmithing, target shooting, model engineering and playing the electric guitar ~ although not all at the same time! Chris lives in Torquay and is always happy to hear from people. He can be reached at [email protected].

3 EDKPA Newsletter — Winter 2020 edition You write . . .

Your opinions and views are important to us and contributions to our Newsletter are very welcome. Please use email where possible and send to: [email protected] or you can post your contributions to our secretary Jean Aplin at 13 Crowden Crescent, Tiverton, Devon EX16 4ET.

Dear George, I know that the new My Care system has been up and running for a short time, but the patient portal doesn’t give blood test results for two weeks after the appointment (as per hospital today) and there is no back history of results data on the system. The Patient View system is no longer being used. This is a very retrograde step and not in the interests of patients. Is there something that can be done about this please? (Name and address supplied) E-MAILED RESPONSE FROM THE MY CARE HELPDESK: Thank you for your message. We are sorry to hear of your frustration and dissatisfaction with the My Care Patient Portal. The system is in its infant stages and experiencing a few teething problems which will hopefully be ironed out shortly under its continuing development. There is a built-in delay in being able to review test results which is understand- ably causing anxiety with our renal, maternity and cancer patients. In the meantime, if you are worried about any of your test results, you should contact your treating team to put your mind at ease. My Care went live on 10th October, so only records from that date will be visible on the system. Your paper records will still be stored and can be requested by your treating team as part of your ongoing treatment. Your treating clinicians can request that parts of your historic medical records be scanned onto the system if they feel it is relevant to your ongoing treatment. With regard to instructions for use, there is a list of frequently asked questions on the RD&E website under the My Care Patient Portal Section which may assist. You can call our Help Desk on 01392 404664 if you are experiencing any dif!culties. We are currently compiling a list of concerns and issues which will be raised in future team meetings. In the meantime, if you have any concerns or wish to make a complaint, you may raise this with our PALS service. We apologise for any inconvenience, stress and frustration that this is having on you and your ongoing treatment. (My Care, The Patient Portal Helpdesk)

4 EDKPA Newsletter — Winter 2020 edition Dear George, I have been a transplant patient for over 35 years now and have been looked after extremely well throughout all of that time, including whilst on pre-dialysis, haemodialysis and CAPD…and it doesn’t stop there. I was recently in hospital for a heart operation in Derriford and transferred back to the RD&E, where I was looked after so well by the cardiac team (and have been extremely lucky, given the current circumstances all staff have to work under). While I was on the cardiac ward, I was visited by the renal unit virtually every day to ensure my kidney function was okay and also the (new) drugs were not having any untoward effects. Going through what was a tough time, it was so good to see some of the old faces from the unit and great to feel that I was being looked after so well from all angles. I have now been discharged and am so grateful for the treatment and additional support I received from the kidney unit. Nick P.S. The unit dietician kindly dropped off some supplements on her way home, too!

Citizens Advice Exeter

EDKPA funds a service by Citizens Advice Exeter to provide free expert financial advice on all aspects of claiming state benefits to which our members may be entitled. They have a specialist advisor with knowledge of the issues experienced by patients suffering from all forms of kidney disease. This is an area which has become increasingly complicated due to the ever-changing rules and regulations brought about by the pandemic. The changed times means that most interviews at the moment will be carried out by telephone or video, but the service is very much continuing and is in fact busier than ever! We receive quarterly reports from the CAE so we are aware of how many patients are being advised and the financial outcomes of cases that are resolved. These are, of course, only general in nature because the details of each case remain confidential. However, for the six-month period up to 30th September, our advisor saw a total of 20 clients and for those cases that were completed during this period there was an average financial gain of £6,880 per client per year with a total gain of £61,916. These are very significant sums, which goes to show how many benefits may be going unclaimed by people who don’t take advantage of the service. If you would like an appointment please contact our secretary, Jean Aplin, by email on [email protected] or telephone 01884-254260 or 07936 069988 (mobile). Alternatively you can use the contact form on the EDKPA website https://www.edkpa.org.uk/contact-us/. Nick Wood

5 EDKPA Newsletter — Winter 2020 edition Diet and COVID-19

What can I eat to boost my immune system? A healthy balanced diet can support your immune system to work at its best, but there are no ‘super foods’ which can boost your immune system above this. Avoid taking any additional foods or supplements labelled as ‘immune boosting’ when you have kidney problems as your body may not be able to process them in the usual way and they could cause harm. To support your immune system: • Include at least 5 portions of fruit or vegetables each day. These can be fresh, frozen, dried or canned. Aim to have at least one portion with every meal. Try to limit fruit to two portions if you have diabetes. • Eat regular meals with wholegrain cereals, breads, pasta, rice or potatoes for energy. • Ensure you are eating foods high in protein ~ beans, pulses, meat, !sh, eggs and other proteins with two meals per day. Choose lean meats and avoid frying where possible. • Include some dairy and alternatives every day for calcium. *Your Dietitian may advise different foods/portion sizes depending on your blood results.

Fruit and vegetables Starchy A reminder of foods the Eatwell Guide which forms the basis of a healthy balanced diet . . . ➤

Oils and spreads Protein-rich non-dairy foods Dairy and alternatives

Will Vitamin D help? The main role of vitamin D in the body is in working with calcium and phosphorus to maintain healthy bones, muscles and teeth. There may be other wide-ranging bene!cial effects of vitamin D, but there are no large studies to suggest that taking vitamin D can prevent you from catching COVID-19.

6 EDKPA Newsletter — Winter 2020 edition Vitamin D is mostly formed in the body through exposure of the skin to sunshine. From October to March the sun radiation in the UK is not strong enough for our skin to produce enough Vitamin D. Many people with kidney problems are already prescribed vitamin D, we would advise you to discuss with your Dietitian, Consultant or GP before taking any supplements. How to stay active while self-isolating and improve your mood It is understandable that many people are struggling with their mental health as a result of the limitations of the COVID-19 pandemic. Eating regular meals and staying active can help to improve your mood and can be incorporated into your daily routine. Have a look at Kidney Beam (https://kidneyresearchuk.org/?s=kidney+beam) or Kidney Care UK (https://www.kidneycareuk.org/about-kidney-health/living-kidney- disease/exercise/)for some exercise videos to do at home. MIND also have some great tips on their website: https://www.mind.org.uk/information- support/coronavirus/coronavirus-and-your-wellbeing/ Local support If you are struggling to get to the shops, have food delivered or are in financial difficulty, the following local support groups may be able to help: East Devon Community Support Hub ~ 01395 571500 (Mon–Fri 9am–5pm). Exeter Community Wellbeing ~ 01392 265000 (Mon–Fri 9am–5pm). Torquay, Paignton & Brixham Community Helpline ~ 01803 446022 (Mon–Fri 10am–6pm, Sat 9.30am–12.30pm). North Devon Community Support ~ 01271 388280. Some money-saving tips • Write a shopping list and avoid shopping on an empty stomach! • Special offers are not always the cheapest option; they are just cheaper than normal for that brand. Compare the unit price instead. • Seasonal fruit and vegetables are often less expensive. • Look out for fresh food price reductions, but use within date. • Take a packed lunch if you are away from home at mealtimes. • Make homemade soup with leftover vegetables and a low salt vegetable stock. • Try the store’s own brands as they are often cheaper. • Reduce your meat portion and add extra pulses (beans, lentil, chick peas) to classic dishes. E.g. baked beans in a cottage pie. Malnutrition If you have lost weight as a result of a COVID-19 infection or reduced food availability, please contact your renal dietitian for further advice. ~ article prepared by Laura Kyte, renal dietician

7 EDKPA Newsletter — Winter 2020 edition NHS advice on COVID-19

The following is a letter that has been sent out to all our Haemodialysis patients. Similar letters have been sent out to all patients on immunosuppression, peritoneal dialysis and those that are pre-dialysis with stage 5 kidney disease. The guidelines referred to in the letter can be found online at gov.uk and also at http://www.edkpa.org.uk. Further advice for people who are clinically extremely vulnerable which applies from 2 December now we’re in Tier 2 is available here.

IMPORTANT: PERSONAL Dear Haemodialysis patient, Important advice to keep you safe from coronavirus We are writing to let you know about government advice for people who are thought to be clinically extremely vulnerable and at highest risk of becoming very unwell if they catch coronavirus (also known as COVID-19). This is because, as someone having Haemodialysis treatments, you are now considered to be in the highest risk category, following review by your specialist. More evidence is now available than at the start of the pandemic about which people are more likely to become very unwell if they catch coronavirus. Because of this, the Chief Medical Officer has agreed that people with kidney impairment should be added to the list of people thought to be at highest risk. A large number of people are thought to be highest risk ~ around 1 in 20 adults. The risk of becoming very unwell is still small, but the Government recommends that you take extra precautions. Measures which everyone needs to follow Coronavirus cases are rising rapidly across the whole of the UK, and that is why, from 5th November, the Government has taken the following action: 1. Requiring people to stay at home, except for specific purposes. 2. Preventing gathering with people you do not live with, except for specific purposes. 3. Closing certain businesses and venues. These new national restrictions are rules that everyone must follow. The full details of these rules can be found online at gov.uk/coronavirus. Additional guidance for those who are clinically extremely vulnerable In addition, the Government has issued new guidance to clinically extremely vulnerable people, which advises the additional things you can do to keep yourself safe, whilst continuing to stay generally fit and well. This guidance is available online at gov.uk/coronavirus and is advisory, which means that whilst it is strongly suggested that you follow it, you can choose whether or not to do so. Please remember that the NHS is open and we urge you to continue to access all the NHS services that you need. It is safer for you to use the NHS than to try to manage alone. Importantly, you should continue to have your kidney disease monitored. Please discuss any concerns you have with your clinical team. We recognise this is a difficult time for you. Thank you for your efforts to keep yourself and others safe. Yours sincerely,

Mickie Dicks Dr. Lucy Smyth Clinical Matron, Renal Services Renal Clinical Lead

8 EDKPA Newsletter — Winter 2020 edition 8 8 8 8 8 8 8 8 8 8 8 8 8 8 8 8 8 8 8 8 Exeter & District KIDNEY PATIENTS’ ASSOCIATION

ADVICE AND INFORMATION Citizens Advice Exeter can provide expert financial advice on all aspects of claiming state benefits that you may be entitled to through an advisor specialising in the sort of issues specific to people suffering from kidney diseases. This is a service available only through EDKPA. But you do need to book first which you can do by contacting our secretary Jean Aplin by email on [email protected] or telephone 01884 254260 or 07936 069988 (mobile). If appropriate Jean will be able to book you an appointment, either in person at the CAE’s offices in Exeter, or over the telephone, or suggest other organisations for you to contact. This is a free service provided by us to our members. The National Kidney Federation has a free telephone helpline on 0800 169 09 36 where you can speak to an advisor on all aspects of life as a kidney patient from medical to social issues. They have an extensive range of over 100 information leaflets which they can send to you and which are available to download on www.kidney.org.uk. Kidney Care UK has a website www.kidneycareuk.org with lots of help and advice as well as up to date information, recipes etc. They can provide the services of a South West based advocacy officer who can support and help with applications for grants etc. They can be contacted on 01420 541424.

Exeter & District Kidney Patients’ Association Registered Charity No 276981 8 8 8 8 8 8 8 8 8 8 8 8 8 8 8 8 8 8 8 8

9 EDKPA Newsletter — Winter 2020 edition The Art of Lockdown

The Covid-19 Pandemic has forced all of us to stay indoors more, which has resulted in a lot of us !nding time to pursue our otherwise side-lined hobbies of gardening, cooking, arts and crafts etc. For me it’s painting. I only took up painting !ve years ago when I retired from work. Previous to that the last time I had done any painting was at school. I enrolled in a few adult learning courses through Exeter College and was given a couple of courses at the Phoenix by my family as presents. Otherwise I am self-taught ~ which means I’ve tried to pick things up as I go along! People in isolation are at risk of developing depression or increased anxiety. It can, however, provide inspiration as well. Shakespeare was supposed to have written King Lear and other plays in isolation. But art can simply make you feel more in control and give you a sense of freedom or escapism that is hard to achieve in any other way. It’s certainly absorbing and when lost in creativity it’s easy to lose sense of time too. It can help you relax and can bring joy (as well as a bit of frustration at times!) but is always rewarding. Winston Churchill once said that “if it wasn’t for painting, I couldn’t bear the strain of things”. Churchill also famously referred to his paintings as “my little daubs” ~ possibly giving the impression that art at any rate was one of the few things that he was genuinely modest about (his paintings are now extremely valuable). We some- times think of art as a talent, but in reality it is a skill that can be learnt and developed. The pros- pect of learning how to draw or paint can seem to be daunting at !rst, but with a little persever- ance most will !nd the images they create improve quickly. I joined a small art group based in Pennsylvania, Exeter. We used to meet in a rented hall, but now meet up every Monday afternoon

10 EDKPA Newsletter — Winter 2020 edition by Zoom. Whilst we all paint together, we share some gossip, bounce ideas off each other and share our art work on our WhatsApp group. So it’s been something for me to look forward to each week and a way of making new friends. With a painting always on the go, I !nd I’m never short of things to do. Even if I’m lacking in energy I can always get my paints out and combined with a bit of music, I feel better afterwards. There are lots of ways of exploring art and art history during lockdown too. I have discovered that with our art galleries closed many of them are offering virtual tours of their exhibitions as well as providing lectures and lots of information. There are many places to !nd tutorials and demonstrations on line. There’s lots on television too ~ both live as well as on BBC iPlayer, ITV Hub etc. For me, I’ve discovered the more I !nd out the more I realise how much more there is to !nd out. When I was younger I was a very keen surfer. During the 1960s, Nat Young, who was at the time considered to be the world’s number one surfer, was asked who he thought was the best surfer in the world. Without hesitation he replied that the best surfer was the one who was having the most fun. The same can be said of art. You don’t have to be good ~ you just need to be good enough to enjoy it. I have found great comfort in my art and aim to continue painting long after we get back to “normal”. Indeed perhaps we ought to consider making art available to all our haemodialysis patients whilst they are dialysing? If you have any paintings, drawings or art works, we’d love to see them. Please send your photos to us at [email protected] and we’ll print them in our next edition. George Palmer, Chairman EDKPA

 AMAZON SMILE  With thanks to the hard work of our Treasurer, it is now possible to nominate Exeter & District Kidney Patients’ Association as your charity of choice when you shop on Amazon. Just go to smile.amazon.co.uk to select EDKPA and start shopping. Amazon will then make a donation for you out of their own funds based upon the net amount that you spend. For future shopping just remember to go to Amazon Smile and not the ordinary Amazon site ~ the prices are all the same!

11 EDKPA Newsletter — Winter 2020 edition

A twist on the traditional yule log, this Kidney Kitchen version is made without chocolate or dried fruit, making it a great low potassium festive indulgence. Gingerbread INGREDIENTS Christmas Log • 50g unsalted butter • 50g treacle • 50g golden syrup • 2 balls stem ginger from a jar • 2 tablespoons stem ginger syrup • 4 large eggs • 100g dark muscovado sugar • 100g plain flour • ½ teaspoon baking powder • 2 teaspoons ground ginger ICING • 200g unsalted butter, softened • 250g icing sugar • 2tsp vanilla extract • 3 tablespoons stem ginger syrup METHOD 1. Heat oven to 190C/gas mark 5. Grease and line a 20 x 30cm Swiss roll tin with baking parchment, then grease the parchment. Put the treacle, syrup, butter and grated stem ginger into a pan, heat to melt and stir, set aside to cool. 2. Put the eggs and sugar in a bowl and whisk for 10 minutes until doubled in size. Sift over the flour, baking powder and spices, then pour the melted butter mixture around the sides of the bowl so that it trickles into the whisked eggs. 3. Gently fold everything together and pour the mixture into the Swiss roll tin. Bake for 12 mins until just cooked. Lay a sheet of baking parchment on your work surface and dust with a little icing sugar. 4. Tip the cooked cake directly onto the parchment. Using a serrated knife, score a line 2cm from one short end, do not cut all the way through. Roll up from this end, with the parchment between the layers. Leave to cool on a wire rack. 5. To make the icing, put the ingredients in a bowl and whisk till smooth. Transfer to a piping bag fitted with a large round nozzle, unroll the sponge and drizzle the surface with some ginger syrup. Pipe a layer of ginger buttercream over the inside of the roll, then tightly re-roll into a roulade. Slice off both ends for a neat finish. Use the remaining icing to pipe a thick layer over the top of the sponge. Decorate with white pearl sprinkles.

FOOD FACTS The carbohydrates come mainly from the reﬁned sugars and ﬂour. This cake is low in both potassium, phosphate and protein.

This and other great kidney friendly recipes may be found in the Kidney Care UK Kidney Kitchen at www.kidneykitchen.org 12 EDKPA Newsletter — Winter 2020 edition

13 EDKPA Newsletter — Winter 2020 edition Christmas Carols for Medical Conditions 

AMNESIA: I Don’t Know if I’ll Be Home for Christmas. NARCISSISM: Hark the Herald Angels Sing About Me. PARANOID: Santa Claus is Coming to Get Me. OBSESSIVE COMPULSIVE DISORDER: Jingle Bells, Jingle Bells, Jingle Bells, Jingle Bells, Jingle Bells, Jingle Bells … SENILE DEMENTIA: Walking in a Winter Wonderland Miles From My House In My Slippers and Dressing Gown. DEAF: Silent Night. TINNITUS: Jingle Bells. DEPRESSION: Blue Christmas. ALCOHOLIC: Here We Come A-Wassailing.

Following last Poinsetias at Christmas September’s Te shape of te poinsetia ﬂower and government ruling leaves are sometmes tought as a prohibiting gatherings symbol of te Star of Betlehem which of more than six people, the ever-popular Christmas led te Wise Men t Jesus. pantomime of Snow White and the Te red coloured leaves symbolize te Seven Dwarfs will be renamed blood of Christ. Te whit leaves “Snow White and the represent His purit. Five Dwarfs” 

No Nativity Play this year because the Three Wise Men face a travel ban. The Shepherds have been furloughed. The Innkeeper has shut under Tier 3 regulations and had a slump in bookings. Santa won’t be working as he would break the ‘Rule of 6’ with Dasher, Dancer, Prancer, Vixen, Donner and Blitzen. You know you’re in a As for Rudolph, with that red nose, he hospital when the Christmas should be isolating and taking a test! decorations start to look like this . . .

14 EDKPA Newsletter — Winter 2020 edition Christmas Humour

Prince Philip looks out of the window on Christmas Eve. “That’s some reindeer,” he says. The Queen replies, “68 years. Yes, that is a lot.” ☃ ☃ ☃ ☃ Knowing that the vicar enjoyed his drink, a hotel owner offered him a case of cherry brandy for Christmas in exchange for a free advert in the church newsletter. The vicar agreed and ran this in the next issue: “The vicar would like to thank Patrick Smith for his kind gift of a crate of fruit and for the spirit in which it was given.” ☃ ☃ ☃ ☃ From a brochure advertising the Woolacombe Bay Hotel in Devon: “Our three-night Christmas break includes a packed programme of family entertainment, a crèche, excellent cuisine, and a visit from Satan.” ☃ ☃ ☃ ☃ Just as the Christmas Eve service began, the electricity in the church failed. The ushers found some candles and placed them around. Then the vicar shuf"ed his notes and muttered, “Now, where was I?” A tired voice called out, “Right near the end!” ☃ ☃ ☃ ☃ I once bought my son a set of batteries for Christmas with a note on it which said: “Toys not included.” ☃ ☃ ☃ ☃ While I was working as a store Santa, a boy asked me for an electric train set. “If you get your train,” I told him, “your dad is going to want to play with it too. Will you be happy with that?” The boy became very quiet. So, moving the conversation along, I asked, “What else would you like Santa to bring you?” He promptly replied, “Another train set.”

15 EDKPA Newsletter — Winter 2020 edition

Renal Unit Services ~ an update from Mickie Dicks

We now have a new Cluster Manager, Roland Gulvin. His role is to develop new renal services and support the team in day-to-day issues. Dr Naomi Edney has been appointed as a Renal Consultant. Many of you will know Naomi as she has been with us as a Registrar. We have also appointed two Acute Kidney Injury nurses to work with Naomi. I hope that you have participated in PREM (Patient Report Experience Measures). This was only available on-line this year. We will feed back the results, but do not expect these until the New Year. You will by now have noticed some changes from the implementation of our new IT system called EPIC/MyCare. Some things are still taking longer and will continue to do so until you have all had your !rst appointment. Many patients are asking for their blood results and these are available by registering with the system. Your consultant reviews the blood results very quickly and will call you if there is a problem. At the moment we would request you do not telephone us for your blood results. You may have heard of Attend Anywhere, which is a video consultation invitation for your appointment. If you are invited to use this, I would really encourage you to sign up as it is better than just a phone call. Many of you are worried about Covid and have received letters about shielding. Most kidney patients fall into one shielding category or another, i.e. immunosuppressed or stage 5 kidney disease, or a form of renal replacement therapy. Haemodialysis patients face a different risk due to travel and regular attendance at our units. We are regularly cleaning and using PPE as recommended by Public Health England. Over the latter part of November we moved to weekly swabbing of all HD patients. We will then move to regular screening of all front line staff to further protect you all. We would ask that all patients while in hospital wear a "uid resistant mask (we can provide this for you). Covid is adding an extra strain onto our transport services. If you are found to be positive for Covid and can either drive yourself or have a family member drive you to your treatment, this will be reimbursed at 45 pence per mile. This includes returning home and then returning again to collect you. Please ask at your unit if you are interested in doing this. Reminder: Our dialysis units will be closed on Christmas Day and New Year’s Day to enable you all to be at home. We will be holding dialysis sessions on Sunday 27th December and Sunday 3rd January instead. Best wishes to you all. Michaela Dicks Clinical Matron for Renal and Dermatology Services

16 EDKPA Newsletter — Winter 2020 edition The NHS Peer Leadership Development Programme

Article by Chris Rolfe This is a summary of my knowledge of this new programme, having participated in the launch event and the !rst two weeks of training. Tuesday 3rd November saw the “virtual” launch of the NHS Peer Leadership Development Programme. This is supporting the objective of bringing 2.5 million patients into the “personalised care” scheme by 2024 and 5 million by 2029. “Personalised care” essentially recognises that a single NHS wide approach to delivering treatments is not optimal. Especially when a patient has multiple physical and mental health issues, better outcomes are achieved when the focus is on designing support for that patient as an individual. It may be that several support providers are involved, local carers as well as the patient ~ a “co-produced” personalised care plan will be a bespoke service for that patient. To support the new approach, there is a drive to recruit peer leaders, hopefully 500 by the year 2024. These individuals will have direct experience of one or more situations where personalised care has been of bene!t. They will have gone through the induction and training programme. The training is an initial two-week online course looking at the NHS strategy, changing health needs of an ageing population and examples of personalised care. Then, if people want to consider becoming more closely involved, there are a further two weeks of online learning and facilitated discussion groups. After that, there will be an application process starting in January 2021, for those wishing to be considered for a peer leadership role. There is no charge, unless you want to buy the course materials. Week 1 of the course will give you a "avour of what’s involved and it can be accessed on the internet at the address below: https://www.futurelearn.com/courses/peer-leadership-foundation-step-1 The ethos of the programme can perhaps be summed up in its own words: “Please continue to spread the word about the Peer Leadership Development Programme. We want to reach as many people as possible Mistlete at Christmas from different communities and networks. We’re committed to In te 18t century, staling a developing Peer Leaders with kiss under te mistlete was a diverse insights and experiences. common practce among servants and te If you can help, please let us know. taditon spread fom tere. It’s bad luck As they say, ‘teamwork makes the t refse a kiss under te mistlete. dream work’.”

17 EDKPA Newsletter — Winter 2020 edition Renal Young Adult and Transition Service 2020

2020 has been a dif!cult year for all. The young adult service continues to be busy, especially supporting patients with lockdown, shielding and employment/education issues. The joint renal paediatric clinics between the RD&E and Bristol (which are held in Exeter, North Devon District Hospital, Taunton and Torbay) have continued throughout the pandemic via video consultations and some face to face. We have transitioned !ve young adults from the paediatric service into the adult service. The young adult clinics have been a mixture of face to face, telephone and video consultation. This has been very successful. Unfortunately our annual residential had to be cancelled this year; however, we have provisionally booked it for 2021, dates to follow in the next Newsletter. The Facebook page has been updated regularly with useful websites for mental wellbeing and to help everyone stay in contact virtually. Below is a useful list of various Apps and Websites for all ages:

SAM For all ages. Designed to help people manage and record their Self help anxiety. Users can record their anxiety levels and for Anxiety identify different triggers. Management The app includes 25 self-help options to help users cope Phone app with the physical and mental symptoms of anxiety. Virtual Hope The Virtual Hope Box (VHB) is designed as an accessory for treatment. Contains simple tools to help patients with Phone app coping, relaxation, distraction and positive thinking. iTunes & Users can choose from different activities ~ distract me, Google Play inspire me, relax me and coping tools. Smiling For all ages (from 7 years+) Minds Guided meditations, bite size options, categorised in age Phone app groups. Helps with thoughts and feelings and to self iTunes & Google Play check on mood. Calm Harm For young people who have already started the process of gaining an understanding of their self harm issues. Phone app Provides tasks to resist or manage the urge to self harm. iTunes & Four categories of tasks ~ distract, comfort, express, Google Play release.

18 EDKPA Newsletter — Winter 2020 edition

SuperBetter Designed to increase resilience ~ the ability to stay strong, motivated and optimistic even in the face of Phone app difﬁcult obstacles. Designed as a game to appeal to iTunes & Google Play gamers. WorryTime Ages 12+ The theory is you canʼt control the thoughts that pop into Phone app your head but you can control what you do with them. iTunes & This app allows users to control everyday stress and Google Play anxiety by acting as a place to store your daily worries. Mindfulness For relaxation, stress management, support for Daily depression and anxiety. Phone app *great feedback from a young person who used it for iTunes & Google Play anxiety and panic attacks WellMind For all ages. Designed to help cope with stress, anxiety and Phone app depression. Includes advice, tips and tools to improve iTunes & Google Play mental health and boost well-being. Breathe2Relax Breathe2Relax is a hands-on diaphragmatic breathing exercise tool. Phone app iTunes & Google Play

Websites Young Minds A great resource covering most mental youngminds.org.uk health issues. Survivors: Images and stories of people with Life Unﬁltered kidney disease. http://www.survivorslifeunﬁltered.co.uk/

YouTube Channels WatchWellCast YouTube videos. An excellent resource. Short videos developed in a way that are accessible to young people.

Keep safe and I wish you all a very Happy Christmas and a Healthy and Happy New Year. Ria Taylor Renal Young Adult Nurse Senior Renal Community Nurse Specialist

19 EDKPA Newsletter — Winter 2020 edition Kidney Care UK Report

from Kate Cresswell, Kidney Care UK SW Advocacy Officer 2020! What a year we found ourselves in. Our workload since the end of February right through to current times has been dominated by enquiries and concerns around Covid-19. These enquiries were initially centred around “shielding” for our clientele ~ both transplanted and on dialysis ~ whether that be haemo- or peritoneal. Difficulties with getting grocery deliveries, access to hospital appointments, people losing their jobs, missing out on being “furloughed” (a new word for most of us), and more recently the dilemma of sending children back to school when mum or dad is in the high risk group, as well as safety in the workplace. At the time of writing we are in our second “lockdown”: perhaps a little more relaxed than the first one, with more shops remaining open, but our advice has remained constant: kidney disease is a risk factor in Covid. Indeed, kidney patients in Stage 5 are now officially in the Clinically Extremely Vulnerable group ~ something which Kidney Care UK has successfully campaigned for! Kidney Care UK has carried on with “business as usual” ~ Head Office has been staffed by those who have not been shielding (along with others working from their homes) and the Advocacy team has continued to support folk via the phone, email and the occasional “Zoom” call . . . a video means of communication we didn’t know existed until this year! Our patients’ grants manager and his team have been busy helping people out with welfare grants as well as all the usual grants for household goods. Not surprisingly, holiday grants have all but ceased, but these will doubtless pick up once it is safe for people to travel again, whether this is within the UK or further afield. We have been working in partnership with Auriga Services (https:// www.aurigaservices.co.uk/) for two years now and they have just hit the £1 million mark in securing financial help for kidney patients nationally. This has been via the Benefits and Welfare systems as well as the various tariffs for gas and electricity for our clientele. Locally, referrals to Auriga Services need to come through me, so please do get in touch if you would like to use this service. Looking ahead, we face uncertainty about access to haemodialysis in Europe. Our Policy Director works tirelessly with Government advisers

20 EDKPA Newsletter — Winter 2020 edition both here and in Brussels to try to sustain the reciprocal agreement we currently have, but which could well disappear on 31st December. The implications for haemodialysis patients visiting Europe after this date don’t look great, but we are hopeful that an agreement can be reached. Finally, we are very much here to support all kidney patients and their carers, and offer help in as wide a range of topics as you can imagine. If we can’t directly help, then we invariably know where to go next! Stay safe, stay well. Kate Cresswell [email protected] Tel. 01823 270567 or 07855 738619

Dialysis Action UK

Below is an extract from an email we received from Geoffrey Squire from North Devon:

Dialysis Action UK was formed in 2015 in a rather unusual way. As the head of the church-based organisation, Youthlink (England & Wales) I was booked to address a meeting in Birmingham on the safeguarding of juveniles when travelling away in supervised groups. I was reasonably confident in being able to get dialysis in that area, but when the time got near and there was none available for me, the organiser decided to cancel the event. As the event received prior publicity in the church press, notification of the cancellation was given in the same publication where the reason for cancellation was given. The result was that I received contact from about 24 people, most of who were on dialysis themselves. As almost all were experiencing problems with dialysis away from base or transport or whatever, we formed ourselves into Dialysis Action UK. Due to the problems of meeting and getting dialysis, we ʻmeetʼ by email and telephone. We are a small and informal group but we do get things done. It was through this organisation that I, as its secretary, was contacted by a few adult students who faced many ʻdialysis problemsʼ, the main one being the difficulty of getting dialysis away from base (DAFB) in the UK.

Geoffrey goes on to explain that he might be able to assist patients experiencing difficulties in arranging DAFB and we suggest that should you wish to contact him you should email [email protected] and we’ll pass on your email to him.

21 EDKPA Newsletter — Winter 2020 edition Some more Tommy Cooper-isms . . .

✴ My friend told me he failed his Aboriginal music exam last month. “Did you redo it?” I asked. ✴ I feel like I’m on the way to kicking my obsession with forestry, but my psychiatrist says I’m not out of the woods yet. ✴ I haven’t kept up my subscription to the Scrabble Club. Now they’ve started sending me threatening letters... ✴ Karl Marx is a historically famous philosopher ~ but no one ever mentions his sister, Onya, the inventor of the starting pistol. ✴ I hate it when people use Abba lyrics in everyday life. I do, I do, I do. ✴ I’m 21 hours into my sponsored semaphore marathon, but if I’m honest I’m starting to "ag quite badly now. ✴ I recently attended a concert in Hawaii to celebrate the career of the female singer who sang “Shout!”. I went to honour Lulu... ✴ Never trust atoms; they make up everything... ✴ I met my wife at a dance. I thought she was at home with the kids... ✴ I asked my doctor: “Have you got anything for wind?” So he gave me a kite. ✴ So what if I can’t spell armourgeddun; it’s not the end of the world... ✴ I asked my local baker: “How come all your cakes are just 50p, but that one is £1?” He replied, “That’s Madeira cake.” ✴ I’ve just burned 2,000 calories. That’s the last time I leave brownies in the oven while I take a nap! ✴ I’m reading a book about anti-gravity. It’s impossible to put down. ✴ Two TV aerials got married recently. The wedding was okay, but the reception was even better!

22 EDKPA Newsletter — Winter 2020 edition Christmas Quiz

MIXED UP CHRISTMAS FILMS Solving the Anagrams will lead to popular Christmas film titles.  SOLUTION ON PAGE 26

Anagram Title 1 MR SINGLE (8) 2 TEACHES A SULTAN (3,5,6) 3 SMITH WRIST ACHE (5,9) 4 THE CHALK SLED (4,3,5) 5 LANDSCAPE GRIT (7,6) 6 A DEFINITE WOLF SLUR (3,1,9,4) 7 A VALLEY CLOUT (4,8) 8 CHARCOAL ARM SITS (1,9,5) 9 ENEMIES OMIT LUST (4,2,2,2,5) 10 HIRE DAD (3,4) 11 MARCH SITARS HURT (6,9) 12 HOLY INDIAN (7,3) 13 ONE HAM OLE (4,5 14 CHOIRMASTER FUSS (4,12) 15 RICH HOME MISLABEL FROST (3,2,4,3,9) 16 BARMAN RUN TEST (6,7) 17 HOT NEWSMAN (3,7) 18 CODERS GO (8) 19 PROPHETESS RELAX (3,5,7) 20 A ANT DABS (3,5) 21 A MISMATCHING SCORE (3,5,9) 22 A CHESSMAN TESTS RIVERS (6,5,9) 23 IVY TITAN (8) 24 THE SHARK HELLS (5,3,5) 25 GIANT JELLY WHALE (6,3,3,3)

23 EDKPA Newsletter — Winter 2020 edition NeedNeed support? support?

EDKPA Information & Advice Service provides the same unique opportunity EDKPA offers advice and for family and carers, who live through assistance on !nancial the many ups and downs before, problems and claiming bene!ts, during and after a transplant. through the help of Citizens Advice TSN has trained a number of Exeter. If your treatment is supervised volunteers from around the country. by the Renal Department at the RD&E They offer an ear to listen to your you can telephone 01392 402244 or individual situation and to give email [email protected] and Jean reassurance, understanding and non- will ring you back to either book an medical advice and information. appointment or provide any other Telephone 0800 027 4490 or 0800 027 information and advice by telephone. 4491 for free advice (calls are free from a landline). More details at http:// Kidney Care UK and the NKF www.transplantsupportnetwork.org.uk/ In addition you can contact Kate Cresswell, Kidney Care’s South Support EDKPA by Regular Giving West Advocacy Of!cer You can help the EDKPA by a regular on 01420 541424 if you giving donation. If you are a tax-payer, need advice and support or to apply for the EDKPA will receive your donation a patient’s grant. She can also provide plus the tax amount on top. counselling services and advice on Please download a form at: http:// holiday grants etc. www.edkpa.org/donate/ Thank you. The National Kidney Federation has a free helpline on 0800 169 09 36 where Support EDKPA by Gift Aid they can give advice on all aspects of life as a kidney patient from medical Using Gift Aid issues to holiday insurance. They can means that for also provide you on request, a large every pound you variety of informative lea#ets. as a taxpayer give, we get an extra 25p from the Inland Revenue. This means Transplant Support Network that £10 can be turned into £12.50, as The Transplant long as donations are made through Support Network Gift Aid and you are a taxpayer. Just (TSN) is the only imagine what a difference that could nationwide network make and it does not cost you a thing. that provides support You can download a form here: ~ usually over the http://www.edkpa.org/donate/ or a telephone ~ to patients, family and form is available from our Treasurer carers of all solid organ transplants Ken Battishill, 55 Rydon Park, Rydon and mechanical implants. Lane, Exeter EX2 7HW. The form can As well as giving patients access to be used with a donation to enable someone who has undergone the same EDKPA to claim the extra tax transplantation process as them, it automatically.

24 EDKPA Newsletter — Winter 2020 edition WhatWhat does does the EDKPA the EDKPA do for you do for you?

Here are some examples: ✦ We pay for Information and ✦ Social functions, e.g. the Summer Advice Service with Exeter CAB. Party and the PD Patients’ Party We do this as we have no social at Copplestone.bkpa worker and patients can get the ✦ One-off purchases and grants, best advice on benefits etc. Jean e.g. the purchase of a dialysis Aplin (our secretary) can book machine (whether this is for you into the next available inside the hospital or for appointment with our benefits individual kidney patients in advisor at Citizens Advice. their homes) and other essential ✦ Ria Taylor (CKD Clinical Nurse hospital equipment. Specialist and Renal Young Adult/Transition Nurse) ~ we pay ✦ Secretary ~ providing an part of her salary. invaluable service to our members both in organisational ✦ For a 12-month period we are terms and often being the first paying and supplying snacks for point of contact for anyone patients on Sid Ward to have wanting to be in touch. with their morning cuppa. ✦ Subsidised trips, e.g. weekend/ ✦ We provide 111 television sets day trips and trips to the (Sid Ward 17, Heavitree 24, Day pantomime. Care 9, Creedy 29, Honiton 8, Torquay 24) and remote controls. ✦ We provide financial support to There is an annual cost which members taking part in the includes a rolling schedule of Transplant Games. replacements (the NHS do not ✦ We pay for an interpreter for a pay for televisions). young deaf boy to take part in ✦ The Newsletter ~ this is our main the annual activities weekend means of communicating with (that is half the cost, Kidney our members. Whilst we have Care pay the rest). cut costs as far as possible by ✦ We have a small Welfare Fund sending this out by email, some which can be used to help members still prefer to have patients quickly, e.g. helping a printed copies with the patient with transport costs additional cost that this involves. where they may be unable to ✦ Website and associated internet meet this cost from their own charges. resources. The above are just a few of the things we help fund. If you feel like joining us, contact George Palmer, our Chairman, [email protected]

EDKPA Newsletter — Winter 2020 edition Subscription details

Whether you receive this Newsletter by post or by email, do we have your correct postal or email Answers to the address? If you have changed your address recently, please send your updated address Christmas Quiz details to [email protected]. Also a contact on page 23

telephone number would be appreciated.

Jingle All the Way the All Jingle 25.

Shrek the Halls the Shrek The cost of sending out a paper Newsletter is 24.

Nativity significant to the Association. Whilst we realise 23.

this is essential for many people, if you have an Christmas

Ernest Saves Saves Ernest email address and would like to receive the 22.

One Magic Christmas Magic One

Newsletter by email, please let me know ~ send 21.

Bad Santa Bad an email to [email protected]. 20.

The Polar Express Polar The

If you do not wish to receive this Newsletter any 19.

Scrooged

more, please email [email protected] or contact 18.

The Snowman The

Jean Aplin (see Contact section). 17. Batman Returns Batman 16.

Whilst we do our best to avoid sending the Christmas

I’ll Be Home for Home Be I’ll

Newsletter to members who have passed away, 15.

Four Christmasses Four due to the Data Protection Act we have to rely on 14.

Home Alone Home information from members. 13. Holiday Inn Holiday

Thanks to all the people who help compile this 12. Arthur Christmas Arthur

Newsletter and help to get it out to you. 11. Die Hard Die 10.

Meet Me in St Louis St in Me Meet

Keith Forbes for sending out the Newsletters . . . 9.

A Christmas Carol Christmas A and finally YOU ~ many people send in an article 8.

Love Actually Love

and we are very grateful. 7.

It’s a Wonderful Life Wonderful a It’s 6.

Trading Places Trading

Nick Wood, 5.

Deck the Halls the Deck

Newsletter editor 4.

White Christmas White 3.

The Santa Clause Santa The 2. Gremlins

The next Newsletter is the SPRING edition, 1. to be published on Wednesday 31st March 2021. The closing date for copy is Friday 19th March. Please ensure that contributions (articles, photos etc.) for publication are received by then.

26 EDKPA Newsletter — Winter 2020 edition Join us!

If you are a pre-dialysis, dialysis, transplant patient or friend/carer, come and join us! Bene!ts include organised holidays and trips, supply of televisions for the dialysis unit, social events and automatic membership of the National Kidney Federation. You will also receive this newsletter letting you know what is going on – plus, it’s free to sign up! If possible, please let us have your email address to save on printing/postage  I would like to become a member of the Exeter and District Kidney Patients’ Association and receive a copy of the Newsletter and be eligible for support. I would also like to become a member of the National Kidney Federation and receive their magazine Kidney Life. (Please let us know if you do not wish to become a member of the NKF when joining.)

Name:______

Address ______

______

Postcode______Tel:______

Email______Please try and include an email address – it saves postage for the Newsletter. We never use your email address for anything except EDKPA communications.

Date of Birth: ______

Please send to: Jean Aplin, 13 Crowden Crescent, Tiverton, Devon. EX16 4ET or send an email with the above details to [email protected]

Membership of the EDKPA is free!

27 EDKPA Newsletter — Winter 2020 edition Your EDKPA Your EDKPA – who are we? PRESIDENT DR LUCY SMYTH VICE-PRESIDENT DR CORALIE BINGHAM Secretary Mrs Jean Aplin 13 Crowden Crescent, Tiverton, Devon EX16 4ET Tel: 01884 254260 [email protected] Chairman George Palmer [email protected] Treasurer Ken Battishill 55 Rydon Park, Rydon Lane, Exeter, Devon EX2 7HW Committee Members Kate Cresswell (BKPA), Keith Forbes, Jackie Garry, Sandie Hampshire, Jake Johns, Danny O’Sullivan, Chris Rolfe, Wendy Sincock, Nick Wood Co-opted Ria Taylor (Renal young adult/transition worker) Other contacts Website/Newsletter Nick Wood [email protected] Taunton Group Danny O’Sullivan [email protected] Transplant Games Wendy Sincock Tel: 01647 231597 [email protected] North Devon Kidney Support Group Chairman Donald Lynch Tel: 01271 812300 [email protected] Secretary Roy Sibley [email protected] Social Secretary Cherie Merryfield Tel: 01271 343887 [email protected] Visit our website at http://www.edkpa.org.uk

This newsletter is printed by Garfield Barnett. If you have any queries about printing the newsletter, or general PC problems of your own, I’d recommend giving him a ring: Garfield Barnett, Cotswold Computing, 49, Park Hill, Tiverton, EX16 6RW Home: 01884 253148 Mobile 07964 303368 Email: [email protected]