Kidney Matters - Issue 6, Summer 2019
Kidney Matters is our free quarterly magazine for everyone affected by kidney disease.
This issue includes another recipe for our Kidney Kitchen as well as articles about dialysis transport, UK Kidney week, conservative treatment, and an interview with a retiring dialysis nurse after 33 years.
We know that being a kidney patient can be tough at times and that accessing the right help at the right time isn’t always easy. We’ve spent a great deal of time over the past year talking to kidney patients on dialysis, asking them what we can do to address this. The response was overwhelmingly ‘improved communication’ on what is going on in the kidney world and what is available to them in terms of support and how to access it.
Kidney Matters has been developed to tackle this as well as the many other issues kidney patients face in day-to-day life. Along with shared patient experiences, Kidney Matters provides on how to access emotional and practical support, financial assistance through our grant schemes, advice from leading kidney specialists and tips on how to keep as well as possible by eating a healthy diet whilst on dialysis.
Kidney Matters is our free quarterly magazine for everyone affected by kidney disease.
This issue includes another recipe for our Kidney Kitchen as well as articles about dialysis transport, UK Kidney week, conservative treatment, and an interview with a retiring dialysis nurse after 33 years.
We know that being a kidney patient can be tough at times and that accessing the right help at the right time isn’t always easy. We’ve spent a great deal of time over the past year talking to kidney patients on dialysis, asking them what we can do to address this. The response was overwhelmingly ‘improved communication’ on what is going on in the kidney world and what is available to them in terms of support and how to access it.
Kidney Matters has been developed to tackle this as well as the many other issues kidney patients face in day-to-day life. Along with shared patient experiences, Kidney Matters provides on how to access emotional and practical support, financial assistance through our grant schemes, advice from leading kidney specialists and tips on how to keep as well as possible by eating a healthy diet whilst on dialysis.
18 C O N T I N U E D Transplant first A kidney transplant is the best treatment for most patients, and it is even better if it takes place preemptively (before the need for dialysis). The Transplant First Project, which is designed to address inequalities in access to transplantation, has produced a data collection tool to help units track their pre-emptive transplant listing and rates. The Transplant First data collection tool has already identified several factors that delay transplant work-up before dialysis. System delays are a major contributor, and include not only practical issues like lost letters, but also structural problems such as poor communication between transplant units and other specialties. The researchers conclude that using the Transplant First tool helps identify areas to target to give more patients the chance of a pre-emptive transplant. Transplant follow-up A transplant is of course a treatment, not a cure, and does not abolish the need for continuing kidney care, especially for the long-term side effects of immunosuppression. And transplant patients are not immune to other health problems that become more common with ageing. The Annual Review Transplant Clinic at Guy’s & St Thomas’ Hospitals (GSTT), London, was set up in 2011, and currently sees patients whose transplants have lasted for seven years or more. The annual appointment lasts one hour, and consists of a holistic review of the patient’s physical and psychological health by a clinical nurse specialist and a nephrologist. The team includes a renal pharmacist, and patients can if necessary be referred to other specialties, including a dedicated dermatology clinic. This enables prompt diagnosis of any problems, including the common post-transplant complication of non-melanoma skin cancer (NMSC). protect their skin against the sun, and one in 20 never avoid sun exposure. The team are now considering measures to ensure that every patient knows before their transplant about the importance of sun protection. And finally Much of the research presented in Brighton aimed to ensure that every patient has access to high-quality kidney care, including at the end of life. A project across South London has exposed considerable variation in provision of supportive care in the region’s four kidney units. The team are now making good progress towards establishing quality standards and are developing information that will help patients make decisions about their future care. The South London project is based on collaboration among health professionals with the support of kidney patients. Multidisciplinary collaboration was a feature of much research reported during UKKW 2019, and the meeting shows yet again how much can be achieved when we work with our health professionals to develop more integrated, personalised care for people with kidney disease. Report by Sue Lyon Freelance Medical Writer and Editor, London The GSTT team report that most transplant recipients attending the clinic are aware that they should protect their skin against sun exposure. However, only about one third had received advice before their first transplant. Furthermore, one in 10 of the patients never dress to LEARN MORE Read the latest UK Renal Registry report and download a patient summary at: www.renalreg.org Find out more about Patient view at https://patientview.org/ More information about Transplant First at www.thinkkidneys.nhs.uk/kquip/transplant-first/ kidneycareuk.org
19 Come skydive with me Brave Kidney Warriors across the UK are taking to the skies to show their support for their loved one through a sponsored skydive. You can join this group by signing up to Kidney Care UK’s one-day skydive, taking place at Hinton Airfield, Oxfordshire on Saturday 5th October. This exhilarating challenge will see you jump from more than 10,000 feet and reach speeds of 120 mph as part of a tandem skydive, all to support people affected by kidney disease. Sandra Robinson (middle) with Kidney Care UK staff Claudia and Shanna with Dad, Graeme Sandra Robinson, from South Belfast, is a plucky 67 year old grandmother who took on what she described as a ‘leap of love’ to commemorate what would have been her late husband’s 75th Birthday. She tells us ‘Jimbo was a long-term dialysis patient at both the Ulster Hospital and Belfast City Hospital who sadly died suddenly back in February 2015’. When asked about her skydive, she simply said ‘I was thinking about Jim and that made it all ok. I knew who I was doing it for.’ Scottish sisters Claudia and Shanna jumped in honour of their true inspiration - their dad Graeme - just a couple of weeks ago. ‘He spends 20 hours a week on dialysis and regardless of how he is feeling, he always puts us and others first. Even on his bad days, he gets on with his day like nothing bothers him. He encourages us and motivates us and for that we are proud to call him dad.’ Maddie Warren Sign up now: www.kidneycareuk.org/skydive Hinton Airfield, Oxfordshire Sat 5 Oct Reg. £35 | Pledge £350
- Page 1 and 2: Summer 2019 Issue 06 Ciara Roberts
- Page 3 and 4: 03 Welcome to Kidney Matters Messag
- Page 5 and 6: 7 We launched the Finding a way tog
- Page 7 and 8: 9 so that it does not recognise a t
- Page 9 and 10: 11 Type 2 announced. The trial show
- Page 11 and 12: 13 What does CREDENCE mean for you?
- Page 13 and 14: 15 Cook along with Chef Ripley onli
- Page 15: 17 You can of course dialyse ‘à
- Page 19 and 20: 06 21 The 2020 Kidney Kitchen Calen
- Page 21 and 22: 23 Conservative care is best delive
- Page 23 and 24: LEARN MORE 25 Janet and her friend,
- Page 25 and 26: 27 “The idea, that dialysis patie
- Page 27 and 28: 29 Erythropoietin (EPO) was introdu
- Page 29 and 30: 31 Knitting up my token of love The
- Page 31 and 32: Image Credit: Adam Deeley 33
- Page 33 and 34: 35 I find that exercise is a great
- Page 35 and 36: “They had never seen anyone needl
- Page 37 and 38: 39 I had to try and manage my phosp
18<br />
C O N T I N U E D<br />
Transplant first<br />
A kidney transplant is the best treatment for most<br />
patients, and it is even better if it takes place preemptively<br />
(before the need for dialysis). The Transplant<br />
First Project, which is designed to address inequalities<br />
in access to transplantation, has produced a data<br />
collection tool to help units track their pre-emptive<br />
transplant listing and rates.<br />
The Transplant First data collection tool has already<br />
identified several factors that delay transplant work-up<br />
before dialysis. System delays are a major contributor,<br />
and include not only practical issues like lost letters, but<br />
also structural problems such as poor communication<br />
between transplant units and other specialties. The<br />
researchers conclude that using the Transplant First<br />
tool helps identify areas to target to give more patients<br />
the chance of a pre-emptive transplant.<br />
Transplant follow-up<br />
A transplant is of course a treatment, not a cure,<br />
and does not abolish the need for continuing kidney<br />
care, especially for the long-term side effects of<br />
immunosuppression. And transplant patients are not<br />
immune to other health problems that become more<br />
common with ageing.<br />
The Annual Review Transplant Clinic at Guy’s & St<br />
Thomas’ Hospitals (GSTT), London, was set up in 2011,<br />
and currently sees patients whose transplants have<br />
lasted for seven years or more. The annual appointment<br />
lasts one hour, and consists of a holistic review of the<br />
patient’s physical and psychological health by a clinical<br />
nurse specialist and a nephrologist. The team includes<br />
a renal pharmacist, and patients can if necessary be<br />
referred to other specialties, including a dedicated<br />
dermatology clinic. This enables prompt diagnosis of<br />
any problems, including the common post-transplant<br />
complication of non-melanoma skin cancer (NMSC).<br />
protect their skin against the sun, and one in 20 never<br />
avoid sun exposure. The team are now considering<br />
measures to ensure that every patient knows before<br />
their transplant about the importance of sun protection.<br />
And finally<br />
Much of the research presented in Brighton aimed to<br />
ensure that every patient has access to high-quality<br />
kidney care, including at the end of life. A project across<br />
South London has exposed considerable variation in<br />
provision of supportive care in the region’s four kidney<br />
units. The team are now making good progress towards<br />
establishing quality standards and are developing<br />
information that will help patients make decisions about<br />
their future care.<br />
The South London project is based on collaboration<br />
among health professionals with the support of kidney<br />
patients. Multidisciplinary collaboration was a feature<br />
of much research reported during UKKW <strong>2019</strong>, and the<br />
meeting shows yet again how much can be achieved<br />
when we work with our health professionals to develop<br />
more integrated, personalised care for people with<br />
kidney disease.<br />
Report by Sue Lyon<br />
Freelance Medical Writer and Editor, London<br />
The GSTT team report that most transplant recipients<br />
attending the clinic are aware that they should protect<br />
their skin against sun exposure. However, only about one<br />
third had received advice before their first transplant.<br />
Furthermore, one in 10 of the patients never dress to<br />
LEARN MORE<br />
Read the latest UK Renal Registry report and download a patient summary at:<br />
www.renalreg.org<br />
Find out more about Patient view at https://patientview.org/<br />
More information about Transplant First at www.thinkkidneys.nhs.uk/kquip/transplant-first/<br />
kidneycareuk.org
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