Kidney Matters - Issue 9 Summer 2020
Kidney Matters is our free quarterly magazine for everyone affected by kidney disease.
This issue includes some advice on keeping busy during lockdown, tips on managing your diet and weight, insight into the life of a carer, and an interview with the fabulous 'Marilyn' (front cover). As well as this the we have some delicious kidney-friendly cherry filo pastry tarts in the Kidney Kitchen and our Kidney Clinic discusses the advantages and disadvantages of prednisolone.
Kidney Matters is our free quarterly magazine for everyone affected by kidney disease.
This issue includes some advice on keeping busy during lockdown, tips on managing your diet and weight, insight into the life of a carer, and an interview with the fabulous 'Marilyn' (front cover). As well as this the we have some delicious kidney-friendly cherry filo pastry tarts in the Kidney Kitchen and our Kidney Clinic discusses the advantages and disadvantages of prednisolone.
26There’s no placelike home – howencouraging homekidney therapiescould improve livesPeople living with chronic kidney disease (CKD) needto make a decision about their future treatmentoptions. In Wales, there are many treatments availableincluding: transplantation, dialysis at home (eitherhaemodialysis or peritoneal dialysis), dialysis in ahospital (haemodialysis), and supportive care withoutdialysis (called maximum conservative management).A Welsh study of why patients and their familymembers and carers are choosing their treatment willhelp plan services for the future.TransplantNHS renal teams work with people living with kidney disease, family membersand carers to help patients make the best treatment decision for them.Currently in Wales we know that most people choose dialysis in a hospital astheir preferred treatment option. This is despite hospital-based dialysis beingassociated with the lowest quality of life and being the least cost-effective.We do not yet fully understand the key factors that lead to this choice.In this study, we want to learn more about people with kidney disease,family members’ and carers’ understanding of available treatment options.This includes what they value most when making these difficult decisions,and the support networks available to them across Wales.Learning more about what matters most to this entire group will helpothers when faced with making decisions about future treatmentplans, and improve the quality of information and care delivered by themultidisciplinary renal teams.The researchThis study is being led by Dr Gareth Roberts, and involves amultidisciplinary team of experienced kidney specialists, thecommissioners of renal services, and researchers from the Wales KidneyResearch Unit based at Bangor University.This mixed-method study will collect data from: patient educationprogrammes, renal datasets, national health and social care data-sets, andinterviews with people with kidney disease, family members and carers. Wewill also interview professionals from the multidisciplinary renal teams.The study has just closed to recruiting participants. We have interviewedaround 80 people, including kidney patients who are in the processof making a decision, those who have recently started their chosentreatment, and people who have been on dialysis for a longer time. Dataanalysis has started and we will report findings in autumn 2021.Conservative Carekidneycareuk.org
LEARN MORE27Kidney Matters helps us to connect with peopleliving with kidney disease across the UK. It is vital thatpatients are involved so that findings can have themost benefit for patients, and the public.The impactLearning from people’s experiences and opinionswill help us understand what is most important topeople when making a decision about their futurekidney treatment. This information will inform futureeducation programmes in Wales, help others to makethe right treatment decision for them and their family,and make best use of NHS resources.Unit Dialysis“In this study, we want tolearn more about people withkidney disease, family membersand carers’ understanding ofavailable treatment options,what they value most whenmaking these difficult decisions,and the support networksavailable to them across Wales”Home DialysisFor further information and ways toparticipate in the study (e.g. shareyour views or become involved as apatient and public representative)please see the study project pageat: bit.ly/2xAT9HOContact may also be made viatwitter @theWKRU.Article by Gareth Roberts,Chief investigator andconsultant nephrologist atCardiff and Vale UniversityHealth BoardIssue 9 | Summer 2020
- Page 1 and 2: Summer 2020Issue 09Drag queensand d
- Page 3 and 4: 3Welcome toKidney MattersCoronaviru
- Page 5 and 6: 5And for the budding chefs, now rea
- Page 7 and 8: 7So, does a high BMI number really
- Page 9 and 10: 9were set at a pace I could realist
- Page 11 and 12: LEARN MORE11Survivors: Life Unfilte
- Page 13 and 14: 13“If someone like myself, who le
- Page 15 and 16: 15step is to check that you are tak
- Page 17 and 18: LEARN MORE17the first week of the t
- Page 19 and 20: 19Cook along with Chef Ripley onlin
- Page 21 and 22: 21Through these three elements - qu
- Page 23 and 24: 23the day, began to get to me. One
- Page 25: Members of the Kidney Care UK teamr
- Page 29 and 30: 29It’s never too late...When 83 y
- Page 31 and 32: 31Today I feel amazing, and that’
- Page 33 and 34: 33We have never met anyone outside
- Page 35 and 36: 06 35Become a#KidneyWarriorChalleng
- Page 37 and 38: Us enjoying a nice cup of tea37
- Page 39 and 40: Sign up foryour freecopyWhether you
26
There’s no place
like home – how
encouraging home
kidney therapies
could improve lives
People living with chronic kidney disease (CKD) need
to make a decision about their future treatment
options. In Wales, there are many treatments available
including: transplantation, dialysis at home (either
haemodialysis or peritoneal dialysis), dialysis in a
hospital (haemodialysis), and supportive care without
dialysis (called maximum conservative management).
A Welsh study of why patients and their family
members and carers are choosing their treatment will
help plan services for the future.
Transplant
NHS renal teams work with people living with kidney disease, family members
and carers to help patients make the best treatment decision for them.
Currently in Wales we know that most people choose dialysis in a hospital as
their preferred treatment option. This is despite hospital-based dialysis being
associated with the lowest quality of life and being the least cost-effective.
We do not yet fully understand the key factors that lead to this choice.
In this study, we want to learn more about people with kidney disease,
family members’ and carers’ understanding of available treatment options.
This includes what they value most when making these difficult decisions,
and the support networks available to them across Wales.
Learning more about what matters most to this entire group will help
others when faced with making decisions about future treatment
plans, and improve the quality of information and care delivered by the
multidisciplinary renal teams.
The research
This study is being led by Dr Gareth Roberts, and involves a
multidisciplinary team of experienced kidney specialists, the
commissioners of renal services, and researchers from the Wales Kidney
Research Unit based at Bangor University.
This mixed-method study will collect data from: patient education
programmes, renal datasets, national health and social care data-sets, and
interviews with people with kidney disease, family members and carers. We
will also interview professionals from the multidisciplinary renal teams.
The study has just closed to recruiting participants. We have interviewed
around 80 people, including kidney patients who are in the process
of making a decision, those who have recently started their chosen
treatment, and people who have been on dialysis for a longer time. Data
analysis has started and we will report findings in autumn 2021.
Conservative Care
kidneycareuk.org
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