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 some- thing 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 mean- time, 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.