![Page 1: Supporting Young Adults with kidney disease project board 14 th May 2012 Elisabeth Buggins Chair of NHS Kidney Care Supporting Young Adults with kidney](https://reader035.vdocument.in/reader035/viewer/2022062712/56649c7e5503460f949346b3/html5/thumbnails/1.jpg)
Supporting Young Adults with kidney disease project board
14th May 2012
Elisabeth Buggins
Chair of NHS Kidney Care Supporting Young Adults with kidney disease Project Board
![Page 2: Supporting Young Adults with kidney disease project board 14 th May 2012 Elisabeth Buggins Chair of NHS Kidney Care Supporting Young Adults with kidney](https://reader035.vdocument.in/reader035/viewer/2022062712/56649c7e5503460f949346b3/html5/thumbnails/2.jpg)
Time Meeting Item(s) Speaker
13.30 Welcome and introduction
13.40 Apologies
13.45 Agree notes and actions of previous meeting
13.50
14.00
14.10
Updates:
Project update
Evaluation update
Communications update: assets register
Clare Beard
Grace Sweeney
Clare Beard
14.30 East Midlands research findings presented at BRS 2012: dialysis at home, key relationships
Emma Coyne
15.00 Project learning sustainability Paul Harden
15.20 Any other business
Wednesday 18th July E-seminar
Agenda
![Page 3: Supporting Young Adults with kidney disease project board 14 th May 2012 Elisabeth Buggins Chair of NHS Kidney Care Supporting Young Adults with kidney](https://reader035.vdocument.in/reader035/viewer/2022062712/56649c7e5503460f949346b3/html5/thumbnails/3.jpg)
Supporting Young Adults with kidney disease
Project Board update14th May 2012
Clare BeardProgramme Lead, NHS Kidney Care
![Page 4: Supporting Young Adults with kidney disease project board 14 th May 2012 Elisabeth Buggins Chair of NHS Kidney Care Supporting Young Adults with kidney](https://reader035.vdocument.in/reader035/viewer/2022062712/56649c7e5503460f949346b3/html5/thumbnails/4.jpg)
Project progress (1 of 4)South West:• Bristol and Plymouth have held Young Adult Clinics • Facebook How to Guide developed• Education evening for young adults held in Exeter followed by an
education seminar for staff• Links made with Marie Curie cancer project • Next steps include further engagement with Gloucester, clinics in
Exeter and Cornwall, repeat of SAF review• Discussions regarding sustainability of project
East Midlands:• Project completed; finalising final report• Nursing Times article accepted for publication• BRS presentations and poster, RA poster
![Page 5: Supporting Young Adults with kidney disease project board 14 th May 2012 Elisabeth Buggins Chair of NHS Kidney Care Supporting Young Adults with kidney](https://reader035.vdocument.in/reader035/viewer/2022062712/56649c7e5503460f949346b3/html5/thumbnails/5.jpg)
South Central
Oxford:• YAC every 6 weeks with on-going input from key worker• YAC outcome data - BMJ favourable• Parent interviews, student interviewing patients about education and
employment• PH presenting at NHS Confederation, American Transplant Congress
Reading:• Continued liaison with sexual health team• Plans to develop a working group to link together all the chronic illness
areas working with young adults in the Trust.• Continuing developing the information pack for any young adults
coming into the service• Next steps include evaluating service and finalising information pack
Project progress (2 of 4)
![Page 6: Supporting Young Adults with kidney disease project board 14 th May 2012 Elisabeth Buggins Chair of NHS Kidney Care Supporting Young Adults with kidney](https://reader035.vdocument.in/reader035/viewer/2022062712/56649c7e5503460f949346b3/html5/thumbnails/6.jpg)
London and South East Coast:• Staff education curriculum finalised and disseminated• Peer support developing• Key worker post sustained at Guy’s and St Thomas’• MDT and trust links planned for future• Presenting at BRS (poster) and EWOPA• Free App developed• Next steps include extending engagements of young adults and
professionals throughout the region establishing link to each trust• Further develop staff training and peer support programme
Project progress (3 of 4)
![Page 7: Supporting Young Adults with kidney disease project board 14 th May 2012 Elisabeth Buggins Chair of NHS Kidney Care Supporting Young Adults with kidney](https://reader035.vdocument.in/reader035/viewer/2022062712/56649c7e5503460f949346b3/html5/thumbnails/7.jpg)
Project progress (4 of 4)
North East:•Fourth transition clinic held
•Plans confirmed for Middlesbrough project
•Music workshop carried out
•Further work engaging young people
•Residential
•BKPA funding application
•Next steps include developing website, peer support training , increase engagement of more young adults
•Plan to look at support for young adults who are fatigued, work with local university re exercise
![Page 8: Supporting Young Adults with kidney disease project board 14 th May 2012 Elisabeth Buggins Chair of NHS Kidney Care Supporting Young Adults with kidney](https://reader035.vdocument.in/reader035/viewer/2022062712/56649c7e5503460f949346b3/html5/thumbnails/8.jpg)
Supporting Young Adults with kidney disease
Evaluation update 14th May 2012
Grace SweeneyHead of Research & Evaluation
NHS Kidney Care
![Page 9: Supporting Young Adults with kidney disease project board 14 th May 2012 Elisabeth Buggins Chair of NHS Kidney Care Supporting Young Adults with kidney](https://reader035.vdocument.in/reader035/viewer/2022062712/56649c7e5503460f949346b3/html5/thumbnails/9.jpg)
Supporting Young Adults with kidney disease
Communications update 14th May 2012
Clare BeardProgramme Lead, NHS Kidney Care
![Page 10: Supporting Young Adults with kidney disease project board 14 th May 2012 Elisabeth Buggins Chair of NHS Kidney Care Supporting Young Adults with kidney](https://reader035.vdocument.in/reader035/viewer/2022062712/56649c7e5503460f949346b3/html5/thumbnails/10.jpg)
Achievements
• Resource packDeveloped, including tools from project groups, and guide to further resources.
• How-to guidesCompleted guides on You’re Welcome criteria, and the use of social media.
• Nursing Times article Authored by East Midlands project group. Accepted after peer review and due for publication this summer.
• Poster trainingProject groups have attended an e-seminar on conference poster development, and had one-on-one training where necessary
• BRS postersAll groups presented posters at BRS. East Midlands groups gave oral presentations on their work.
![Page 11: Supporting Young Adults with kidney disease project board 14 th May 2012 Elisabeth Buggins Chair of NHS Kidney Care Supporting Young Adults with kidney](https://reader035.vdocument.in/reader035/viewer/2022062712/56649c7e5503460f949346b3/html5/thumbnails/11.jpg)
Next steps
• Ethnographic studiesPromote outcomes
• Resources pack Further develop and disseminate
• Promote activity of ‘new’ project groups Support East of England and West Midlands project groups
• Additional how-to guides Planned for self assessment framework, immunosuppression and sexual health screening
• RA conferenceNE and EM groups have had abstract accepted for poster presentation at conference in June
![Page 12: Supporting Young Adults with kidney disease project board 14 th May 2012 Elisabeth Buggins Chair of NHS Kidney Care Supporting Young Adults with kidney](https://reader035.vdocument.in/reader035/viewer/2022062712/56649c7e5503460f949346b3/html5/thumbnails/12.jpg)
NHS Kidney CareSupporting Young Adults with
kidney diseaseProject assets map
April 2012
![Page 13: Supporting Young Adults with kidney disease project board 14 th May 2012 Elisabeth Buggins Chair of NHS Kidney Care Supporting Young Adults with kidney](https://reader035.vdocument.in/reader035/viewer/2022062712/56649c7e5503460f949346b3/html5/thumbnails/13.jpg)
Asset mapping
• Defined as:
The process of cataloguing the resources of a community
• Approach developed and used by agencies working with and supporting communities
• Used in local authorities planning, community development and public health
• Intended to help project board identify assets that can support the long term sustainability of project learning
![Page 14: Supporting Young Adults with kidney disease project board 14 th May 2012 Elisabeth Buggins Chair of NHS Kidney Care Supporting Young Adults with kidney](https://reader035.vdocument.in/reader035/viewer/2022062712/56649c7e5503460f949346b3/html5/thumbnails/14.jpg)
Supporting Young Adults with kidney disease 2010-2012
![Page 15: Supporting Young Adults with kidney disease project board 14 th May 2012 Elisabeth Buggins Chair of NHS Kidney Care Supporting Young Adults with kidney](https://reader035.vdocument.in/reader035/viewer/2022062712/56649c7e5503460f949346b3/html5/thumbnails/15.jpg)
Products/ tools:WebsiteForum
YouTubeE-seminar
Literature review slide setOxford YAC film
YAC Reading How to guideAbstracts, posters, presentations, articles
Facebook How to Guide
In development:How to guides on SAF, immunosuppression…
E-seminarsEvaluation report
App(s)
Local products:Facebook pages, Twitter, Apps
NewslettersPathways
Project group modelsSelf assessment framework tool
Educational resourcesReady Steady Go transition documents
Immunosuppression protocol
Events:
BRS, RA, ESOT, KEN,
EWOPA, ERA-EDTNA
Association for Young People’s Health, YPHSIG
Diabetes UK, British Cardiovascular Society ,
Transplantation meetings
Long term conditions
Key contacts and links:Project board
Learning NetworkOther NHS KC work programmes
EB and BM contact with SSRCP transition group
BRS, RABAPN
BKPA, KPAsYoung@NKFYPHSIG, YPH
DH, You’re WelcomeTeenage cancer survivors projects
NHS Diabetes, NHS Liver CareLocal authority young people leads
Connexions
Publications and media coverage:Nursing Standard, Nursing Times, Nursing in Practice
CNO Bulletin, British Journal of Renal Medicine,Kidney Care Matters, Renal Association Website
Children, Maternity, and Families e-bulletinJournal of Renal Nursing
National Youth Agency websiteChildren and Young People Now
Kidney Life,Derby Telegraph
BBC Radio Oxford, Jack FMNewcastle Evening Chronicle
Nottingham Evening PostBBC Oxford TV, BBC Radio Tees
Synapse (Trust magazine at Nottingham)Your Local Guardian
![Page 16: Supporting Young Adults with kidney disease project board 14 th May 2012 Elisabeth Buggins Chair of NHS Kidney Care Supporting Young Adults with kidney](https://reader035.vdocument.in/reader035/viewer/2022062712/56649c7e5503460f949346b3/html5/thumbnails/16.jpg)
Project championsExisting:
• Elisabeth Buggins• Beverley Matthews• Donal O’Donoghue• Sheila Shribman• Janet McDonagh• Paul Harden• Local project group
champions (see over)• Claire Lewis
(Young@NKF), other young adults
• BKPA, KPAs• BRS, RA, BAPN
Could develop:• Cancer:
NHS Improvement, DH• Diabetes: NHS Diabetes,
DH• Liver: NHS Liver Care,
DH• Other transplanted
organs• CF, other LTCs• YPHSIG• AYPH• Director of Nursing and
Medical Director of NHS
![Page 17: Supporting Young Adults with kidney disease project board 14 th May 2012 Elisabeth Buggins Chair of NHS Kidney Care Supporting Young Adults with kidney](https://reader035.vdocument.in/reader035/viewer/2022062712/56649c7e5503460f949346b3/html5/thumbnails/17.jpg)
Project group champions
East Midlands– Matt Tomlin (keyworker)– Charlotte Bebb– Emma Coyne– Cathy Johnson– Catherine Byrne– Wendy Hope
London + SEC– Clare Nottage (keyworker)– Sue Cox– Stephen Marks
North East
– Lorraine Lentell (keyworker)
– Laura Baines
– Margaret McQuade
South Central
– Paul Harden
– Dan Lonsdale (keyworker)
– Katy Priddis (keyworker)
South West
– Jo Woodland (keyworker)
– Sally Tutton (keyworker)
– Rachel Gair
![Page 18: Supporting Young Adults with kidney disease project board 14 th May 2012 Elisabeth Buggins Chair of NHS Kidney Care Supporting Young Adults with kidney](https://reader035.vdocument.in/reader035/viewer/2022062712/56649c7e5503460f949346b3/html5/thumbnails/18.jpg)
Stakeholder power / interest matrix
Keep satisfied Partner units Commissioners Project leads NHS KC (funding provider) Young people Chief execs GPs Trust board General public Adult nephrologists Media
Encourage and influence Staff – MDT KPAs Outside organisations GPs Other LTC services Young adults Exec committee Managers Matron Media Adult nephrologists Trusts Senior nurses
Monitor
GPs Commissioners Renal nurse
Keep informed GPs Project board Trusts Local media Key worker Consultants/drs Nurses and MDT Local renal network Renal consultants Paediatrics (external referral organisations) Patients Other professionals (eg youth workers) Other renal centres in local network External agencies Connexions Social support
Pow
er
Interest Low
High
High
![Page 19: Supporting Young Adults with kidney disease project board 14 th May 2012 Elisabeth Buggins Chair of NHS Kidney Care Supporting Young Adults with kidney](https://reader035.vdocument.in/reader035/viewer/2022062712/56649c7e5503460f949346b3/html5/thumbnails/19.jpg)
Some asset maps include:
• Risks: e.g. NHS reforms and funding
• Strategies to sustain:e.g. links to DH and RCP
![Page 20: Supporting Young Adults with kidney disease project board 14 th May 2012 Elisabeth Buggins Chair of NHS Kidney Care Supporting Young Adults with kidney](https://reader035.vdocument.in/reader035/viewer/2022062712/56649c7e5503460f949346b3/html5/thumbnails/20.jpg)
Supporting Young Adults with kidney disease
East Midlands Research Findings 14th May 2012
Emma CoyneClinical Psychologist in Renal Services
Nottingham University Hospitals NHS Trust
![Page 21: Supporting Young Adults with kidney disease project board 14 th May 2012 Elisabeth Buggins Chair of NHS Kidney Care Supporting Young Adults with kidney](https://reader035.vdocument.in/reader035/viewer/2022062712/56649c7e5503460f949346b3/html5/thumbnails/21.jpg)
Dr Emma Coyne
Renal Clinical Psychologist
This work is part of a national NHS Kidney Care Project
![Page 22: Supporting Young Adults with kidney disease project board 14 th May 2012 Elisabeth Buggins Chair of NHS Kidney Care Supporting Young Adults with kidney](https://reader035.vdocument.in/reader035/viewer/2022062712/56649c7e5503460f949346b3/html5/thumbnails/22.jpg)
Less than a quarter of those dialysing in the UK do so at home, with less than 3% using home haemodialysis (HD) (Castledine et al, 2010).
Evidence that those undertaking PD and HHD respectively experience greater well-being and less distress than those undertaking Hospital HD (Cameron et al. 2000).
We carried out a local audit of 19 young adults (age 18-25) at two renal units found that 79% were on hospital HD, 21% on PD and no young adults were undertaking home (HHD) although several were training for HHD.
![Page 23: Supporting Young Adults with kidney disease project board 14 th May 2012 Elisabeth Buggins Chair of NHS Kidney Care Supporting Young Adults with kidney](https://reader035.vdocument.in/reader035/viewer/2022062712/56649c7e5503460f949346b3/html5/thumbnails/23.jpg)
AIM: To explore the experiences of young adults on dialysis to help us understand how we should support them to access home treatment options.
DESIGN: A semi-structured interview was developed to explore the current and previous experiences of young adults undertaking dialysis. Interviews were audio recorded and later transcribed, before thematic analysis was undertaken.
![Page 24: Supporting Young Adults with kidney disease project board 14 th May 2012 Elisabeth Buggins Chair of NHS Kidney Care Supporting Young Adults with kidney](https://reader035.vdocument.in/reader035/viewer/2022062712/56649c7e5503460f949346b3/html5/thumbnails/24.jpg)
12 young adults with CKD5 (aged 18-26) who had entered adult renal services aged 25 or younger.
7 male and 5 female. 6 of the young adults had transitioned from paediatric services and 6 from had entered adult services directly. 5 had experienced an acute start.
3 young adults had undertaken PD, 3 young adults had undertaken HD and 6 had undertaken both PD and HD.
![Page 25: Supporting Young Adults with kidney disease project board 14 th May 2012 Elisabeth Buggins Chair of NHS Kidney Care Supporting Young Adults with kidney](https://reader035.vdocument.in/reader035/viewer/2022062712/56649c7e5503460f949346b3/html5/thumbnails/25.jpg)
![Page 26: Supporting Young Adults with kidney disease project board 14 th May 2012 Elisabeth Buggins Chair of NHS Kidney Care Supporting Young Adults with kidney](https://reader035.vdocument.in/reader035/viewer/2022062712/56649c7e5503460f949346b3/html5/thumbnails/26.jpg)
![Page 27: Supporting Young Adults with kidney disease project board 14 th May 2012 Elisabeth Buggins Chair of NHS Kidney Care Supporting Young Adults with kidney](https://reader035.vdocument.in/reader035/viewer/2022062712/56649c7e5503460f949346b3/html5/thumbnails/27.jpg)
![Page 28: Supporting Young Adults with kidney disease project board 14 th May 2012 Elisabeth Buggins Chair of NHS Kidney Care Supporting Young Adults with kidney](https://reader035.vdocument.in/reader035/viewer/2022062712/56649c7e5503460f949346b3/html5/thumbnails/28.jpg)
’we’re gonna clean you up, do you know what I mean, do dialysis’. I’m thinking, ‘what’s dialysis’, like I’ve
got no idea what’s going on.
![Page 29: Supporting Young Adults with kidney disease project board 14 th May 2012 Elisabeth Buggins Chair of NHS Kidney Care Supporting Young Adults with kidney](https://reader035.vdocument.in/reader035/viewer/2022062712/56649c7e5503460f949346b3/html5/thumbnails/29.jpg)
![Page 30: Supporting Young Adults with kidney disease project board 14 th May 2012 Elisabeth Buggins Chair of NHS Kidney Care Supporting Young Adults with kidney](https://reader035.vdocument.in/reader035/viewer/2022062712/56649c7e5503460f949346b3/html5/thumbnails/30.jpg)
because they said to me ‘you’re a young person, we don’t want you to be here at the hospital all the time dialysing, better option would be to
put you on peritoneal dialysis’
I think as if I felt that they were just trying to put me on PD so that they wouldn’t have to have me on the
ward 3 times a week doing haemo. Because like I was willing to do PD.
![Page 31: Supporting Young Adults with kidney disease project board 14 th May 2012 Elisabeth Buggins Chair of NHS Kidney Care Supporting Young Adults with kidney](https://reader035.vdocument.in/reader035/viewer/2022062712/56649c7e5503460f949346b3/html5/thumbnails/31.jpg)
![Page 32: Supporting Young Adults with kidney disease project board 14 th May 2012 Elisabeth Buggins Chair of NHS Kidney Care Supporting Young Adults with kidney](https://reader035.vdocument.in/reader035/viewer/2022062712/56649c7e5503460f949346b3/html5/thumbnails/32.jpg)
Erm… it was really daunting at first because the hospital had really
played it down and made it really easy and like you don’t require much room and stuff like that but in reality
you require like a whole room to store everything …and it does take
up a lot of your time as well, like setting up the machine, kinda think if
the hospital were more honest it would have helped.
![Page 33: Supporting Young Adults with kidney disease project board 14 th May 2012 Elisabeth Buggins Chair of NHS Kidney Care Supporting Young Adults with kidney](https://reader035.vdocument.in/reader035/viewer/2022062712/56649c7e5503460f949346b3/html5/thumbnails/33.jpg)
![Page 34: Supporting Young Adults with kidney disease project board 14 th May 2012 Elisabeth Buggins Chair of NHS Kidney Care Supporting Young Adults with kidney](https://reader035.vdocument.in/reader035/viewer/2022062712/56649c7e5503460f949346b3/html5/thumbnails/34.jpg)
![Page 35: Supporting Young Adults with kidney disease project board 14 th May 2012 Elisabeth Buggins Chair of NHS Kidney Care Supporting Young Adults with kidney](https://reader035.vdocument.in/reader035/viewer/2022062712/56649c7e5503460f949346b3/html5/thumbnails/35.jpg)
I kept getting peritonitis and infection, come and go, and come
and go, and I had enough. I said ‘you know what I can’t be bothered no more, I don’t want to do this,’ I’ve done four and a half years, took on
all the responsibility, I’m gonna move to this dialysis [HD] now, where I can just chill out and they do something
for once. So that’s it and then I changed it over yeah.
![Page 36: Supporting Young Adults with kidney disease project board 14 th May 2012 Elisabeth Buggins Chair of NHS Kidney Care Supporting Young Adults with kidney](https://reader035.vdocument.in/reader035/viewer/2022062712/56649c7e5503460f949346b3/html5/thumbnails/36.jpg)
![Page 37: Supporting Young Adults with kidney disease project board 14 th May 2012 Elisabeth Buggins Chair of NHS Kidney Care Supporting Young Adults with kidney](https://reader035.vdocument.in/reader035/viewer/2022062712/56649c7e5503460f949346b3/html5/thumbnails/37.jpg)
…and I started thinking, ‘nah, I don’t wanna go. I don’t know where I’m
gonna be staying. I don’t know what the infection risk is going to be like
there, I don’t know if it’s a clean place. I’m not risking my life.’
![Page 38: Supporting Young Adults with kidney disease project board 14 th May 2012 Elisabeth Buggins Chair of NHS Kidney Care Supporting Young Adults with kidney](https://reader035.vdocument.in/reader035/viewer/2022062712/56649c7e5503460f949346b3/html5/thumbnails/38.jpg)
![Page 39: Supporting Young Adults with kidney disease project board 14 th May 2012 Elisabeth Buggins Chair of NHS Kidney Care Supporting Young Adults with kidney](https://reader035.vdocument.in/reader035/viewer/2022062712/56649c7e5503460f949346b3/html5/thumbnails/39.jpg)
…Like, like sometimes when my machine wouldn’t work at night and it’d keep
beeping all night, I’d be so peed off and like I sleep in the same room as my two sisters, right and erm basically erm, and I’d, I start banging it and swearing, right and I know that’s not gonna help, but I’d
bang it and then my sisters’d ask me ‘what’s wrong, what’s wrong, are you ok,
do you want me to do this’, and I’d go ‘what you gonna do as well, leave me
alone!’,
![Page 40: Supporting Young Adults with kidney disease project board 14 th May 2012 Elisabeth Buggins Chair of NHS Kidney Care Supporting Young Adults with kidney](https://reader035.vdocument.in/reader035/viewer/2022062712/56649c7e5503460f949346b3/html5/thumbnails/40.jpg)
![Page 41: Supporting Young Adults with kidney disease project board 14 th May 2012 Elisabeth Buggins Chair of NHS Kidney Care Supporting Young Adults with kidney](https://reader035.vdocument.in/reader035/viewer/2022062712/56649c7e5503460f949346b3/html5/thumbnails/41.jpg)
![Page 42: Supporting Young Adults with kidney disease project board 14 th May 2012 Elisabeth Buggins Chair of NHS Kidney Care Supporting Young Adults with kidney](https://reader035.vdocument.in/reader035/viewer/2022062712/56649c7e5503460f949346b3/html5/thumbnails/42.jpg)
I did live on my own until I had dialysis. Moving back in with my parents was
difficult, cos obviously you’ve got your own space, you’ve got your own life, and then when you have kidney failure you can’t lift
heavy objects, and lifting like five litres and then I had 18 litres in my bag after my
full cycle, in a big bag that you’ve got to lift and drain out into like a toilet or a bath
or something. I wouldn’t have….No, I couldn’t do that myself. That was difficult, cos I am quite an independent person… I think that was the most…to move back in
with my parents, and still live with my parents, so it’s (laugh) it’s quite demoralising, for me anyway
![Page 43: Supporting Young Adults with kidney disease project board 14 th May 2012 Elisabeth Buggins Chair of NHS Kidney Care Supporting Young Adults with kidney](https://reader035.vdocument.in/reader035/viewer/2022062712/56649c7e5503460f949346b3/html5/thumbnails/43.jpg)
![Page 44: Supporting Young Adults with kidney disease project board 14 th May 2012 Elisabeth Buggins Chair of NHS Kidney Care Supporting Young Adults with kidney](https://reader035.vdocument.in/reader035/viewer/2022062712/56649c7e5503460f949346b3/html5/thumbnails/44.jpg)
That and now I’m single, I’m a bit self conscious. I was never before really, but obviously I’ve got a pipe sticking
out of me gut and stuff, it’s like hmm…how do you explain that to a
girl or something?
![Page 45: Supporting Young Adults with kidney disease project board 14 th May 2012 Elisabeth Buggins Chair of NHS Kidney Care Supporting Young Adults with kidney](https://reader035.vdocument.in/reader035/viewer/2022062712/56649c7e5503460f949346b3/html5/thumbnails/45.jpg)
![Page 46: Supporting Young Adults with kidney disease project board 14 th May 2012 Elisabeth Buggins Chair of NHS Kidney Care Supporting Young Adults with kidney](https://reader035.vdocument.in/reader035/viewer/2022062712/56649c7e5503460f949346b3/html5/thumbnails/46.jpg)
but when I was on dialysis [PD] I hadn’t had a night away from my
bedroom for like 6 months.
But now that I just do this, four times, three times a week – come here, get it done, go back home – I can only have, I only need like five hours sleep, and I can get up whatever
time I want, it feels so much more easier.
![Page 47: Supporting Young Adults with kidney disease project board 14 th May 2012 Elisabeth Buggins Chair of NHS Kidney Care Supporting Young Adults with kidney](https://reader035.vdocument.in/reader035/viewer/2022062712/56649c7e5503460f949346b3/html5/thumbnails/47.jpg)
Although no one in the study was on HHD it is likely that some of the issues will be similar.
Insufficient provision of information about dialysis options and a perceived lack of freedom on home dialysis may affect the young adults’ adjustment to home dialysis.
Home dialysis involves significant responsibilities and some but not all young adults are ready to accept that responsibility.
![Page 48: Supporting Young Adults with kidney disease project board 14 th May 2012 Elisabeth Buggins Chair of NHS Kidney Care Supporting Young Adults with kidney](https://reader035.vdocument.in/reader035/viewer/2022062712/56649c7e5503460f949346b3/html5/thumbnails/48.jpg)
Being young should not necessarily lead to an automatic recommendation that a home based therapy will offer the best quality of life.
Factors such as maturity and the availability of practical support are considered when counselling young adults on dialysis options.
Young adults (particularly acute RRT start) need sufficient information about the impact of home dialysis on their lifestyle to make an informed choice.
Young adults will need specific targeted support if we are going to increase up take and minimise failure rates of home therapies in this age group.
![Page 49: Supporting Young Adults with kidney disease project board 14 th May 2012 Elisabeth Buggins Chair of NHS Kidney Care Supporting Young Adults with kidney](https://reader035.vdocument.in/reader035/viewer/2022062712/56649c7e5503460f949346b3/html5/thumbnails/49.jpg)
Thank you to… NHS Kidney Care
Heather Langham (Nottingham and Derby) Matt Tomlin (Nottingham and Derby) Wendy Hope (East Midlands Renal
Network) Cathy Johnson (Derby) Dr Charlotte Bebb (Nottingham) Dr Catherine Byrne (Nottingham)
The young adults who participated in the project
![Page 50: Supporting Young Adults with kidney disease project board 14 th May 2012 Elisabeth Buggins Chair of NHS Kidney Care Supporting Young Adults with kidney](https://reader035.vdocument.in/reader035/viewer/2022062712/56649c7e5503460f949346b3/html5/thumbnails/50.jpg)
Dr Emma Coyne
Renal Clinical Psychologist
This work is part of a national NHS Kidney Care Project
![Page 51: Supporting Young Adults with kidney disease project board 14 th May 2012 Elisabeth Buggins Chair of NHS Kidney Care Supporting Young Adults with kidney](https://reader035.vdocument.in/reader035/viewer/2022062712/56649c7e5503460f949346b3/html5/thumbnails/51.jpg)
Young adults with chronic kidney disease (CKD) are a vulnerable group with poor treatment outcomes. (Watson, 2000).
Recognition has grown that having CKD as a young adult impacts greatly on many areas of life, including education, employment and relationships. (Lewis, 2010).
Coping with kidney disease may impact on the social development of young adults and interfere with their progression through the normal developmental stages of adolescence (individuation, maturation, and independence).
Social support is a modifiable risk factor and has been linked to improved outcomes including survival, concordance and quality of life. (Zheng,2010).
![Page 52: Supporting Young Adults with kidney disease project board 14 th May 2012 Elisabeth Buggins Chair of NHS Kidney Care Supporting Young Adults with kidney](https://reader035.vdocument.in/reader035/viewer/2022062712/56649c7e5503460f949346b3/html5/thumbnails/52.jpg)
AIM: This research aimed to explore the impact of kidney disease on the relationships (friends, family and partners) of young adults.
DESIGN: A semi-structured interview was developed to explore the current and previous experiences of relationships. Interviews were audio recorded and later transcribed, before thematic analysis was undertaken.
![Page 53: Supporting Young Adults with kidney disease project board 14 th May 2012 Elisabeth Buggins Chair of NHS Kidney Care Supporting Young Adults with kidney](https://reader035.vdocument.in/reader035/viewer/2022062712/56649c7e5503460f949346b3/html5/thumbnails/53.jpg)
14 young adults with CKD5 (aged 18-26) who had entered adult renal services aged 25 or younger.
8 male and 6 female. 7 of the young adults had transitioned from paediatric services and 7 from had entered adult services directly. 5 had experienced an acute start.
All modalities were represented (Pre-dialysis, HD, PD, Transplant).
![Page 54: Supporting Young Adults with kidney disease project board 14 th May 2012 Elisabeth Buggins Chair of NHS Kidney Care Supporting Young Adults with kidney](https://reader035.vdocument.in/reader035/viewer/2022062712/56649c7e5503460f949346b3/html5/thumbnails/54.jpg)
![Page 55: Supporting Young Adults with kidney disease project board 14 th May 2012 Elisabeth Buggins Chair of NHS Kidney Care Supporting Young Adults with kidney](https://reader035.vdocument.in/reader035/viewer/2022062712/56649c7e5503460f949346b3/html5/thumbnails/55.jpg)
![Page 56: Supporting Young Adults with kidney disease project board 14 th May 2012 Elisabeth Buggins Chair of NHS Kidney Care Supporting Young Adults with kidney](https://reader035.vdocument.in/reader035/viewer/2022062712/56649c7e5503460f949346b3/html5/thumbnails/56.jpg)
![Page 57: Supporting Young Adults with kidney disease project board 14 th May 2012 Elisabeth Buggins Chair of NHS Kidney Care Supporting Young Adults with kidney](https://reader035.vdocument.in/reader035/viewer/2022062712/56649c7e5503460f949346b3/html5/thumbnails/57.jpg)
How do you tell a person you’ve got a pipe sticking out of you, stuff like
that, it’s not kind of er the first thing you tell them about? I dunno.
![Page 58: Supporting Young Adults with kidney disease project board 14 th May 2012 Elisabeth Buggins Chair of NHS Kidney Care Supporting Young Adults with kidney](https://reader035.vdocument.in/reader035/viewer/2022062712/56649c7e5503460f949346b3/html5/thumbnails/58.jpg)
![Page 59: Supporting Young Adults with kidney disease project board 14 th May 2012 Elisabeth Buggins Chair of NHS Kidney Care Supporting Young Adults with kidney](https://reader035.vdocument.in/reader035/viewer/2022062712/56649c7e5503460f949346b3/html5/thumbnails/59.jpg)
Yeah, erm I was quite petrified at first, cos obviously you don’t tell
them...you don’t want to scare them off.
I mean its hard meeting people cos obviously I don’t go out much and
then if I do start talking to people as soon as I mention, like me being
poorly and dialysis and the fact of a transplant they’re gone.
![Page 60: Supporting Young Adults with kidney disease project board 14 th May 2012 Elisabeth Buggins Chair of NHS Kidney Care Supporting Young Adults with kidney](https://reader035.vdocument.in/reader035/viewer/2022062712/56649c7e5503460f949346b3/html5/thumbnails/60.jpg)
![Page 61: Supporting Young Adults with kidney disease project board 14 th May 2012 Elisabeth Buggins Chair of NHS Kidney Care Supporting Young Adults with kidney](https://reader035.vdocument.in/reader035/viewer/2022062712/56649c7e5503460f949346b3/html5/thumbnails/61.jpg)
![Page 62: Supporting Young Adults with kidney disease project board 14 th May 2012 Elisabeth Buggins Chair of NHS Kidney Care Supporting Young Adults with kidney](https://reader035.vdocument.in/reader035/viewer/2022062712/56649c7e5503460f949346b3/html5/thumbnails/62.jpg)
She’s like when I’m with you I don’t want to talk about my health, I wanna talk about like a normal
person would.
...there’s people I speak to still from school that still don’t really know what’s wrong with me, they just
know that something is and I’m fine with that.
![Page 63: Supporting Young Adults with kidney disease project board 14 th May 2012 Elisabeth Buggins Chair of NHS Kidney Care Supporting Young Adults with kidney](https://reader035.vdocument.in/reader035/viewer/2022062712/56649c7e5503460f949346b3/html5/thumbnails/63.jpg)
Every now and then when you are ill and you do want someone to rant at, you want someone who knows what
you’ve been through
![Page 64: Supporting Young Adults with kidney disease project board 14 th May 2012 Elisabeth Buggins Chair of NHS Kidney Care Supporting Young Adults with kidney](https://reader035.vdocument.in/reader035/viewer/2022062712/56649c7e5503460f949346b3/html5/thumbnails/64.jpg)
![Page 65: Supporting Young Adults with kidney disease project board 14 th May 2012 Elisabeth Buggins Chair of NHS Kidney Care Supporting Young Adults with kidney](https://reader035.vdocument.in/reader035/viewer/2022062712/56649c7e5503460f949346b3/html5/thumbnails/65.jpg)
My sister’s always been there as well, looking after me and stuff, and my
brother, erm I remember I was ill, when I was younger and he was doing his
A’Levels but he had like study leave. But instead of studying at home , he came
into hospital, and was doing his revision here just to be with me and stuff so.
They’re the best.
![Page 66: Supporting Young Adults with kidney disease project board 14 th May 2012 Elisabeth Buggins Chair of NHS Kidney Care Supporting Young Adults with kidney](https://reader035.vdocument.in/reader035/viewer/2022062712/56649c7e5503460f949346b3/html5/thumbnails/66.jpg)
I don’t really speak to my mum anymore because she couldn’t cut the apron
strings. Erm she wanted to care for me and as I grew, sort of 15 or 16, I wanted to be a bit more independent with it and
my Mum could never let go.
![Page 67: Supporting Young Adults with kidney disease project board 14 th May 2012 Elisabeth Buggins Chair of NHS Kidney Care Supporting Young Adults with kidney](https://reader035.vdocument.in/reader035/viewer/2022062712/56649c7e5503460f949346b3/html5/thumbnails/67.jpg)
![Page 68: Supporting Young Adults with kidney disease project board 14 th May 2012 Elisabeth Buggins Chair of NHS Kidney Care Supporting Young Adults with kidney](https://reader035.vdocument.in/reader035/viewer/2022062712/56649c7e5503460f949346b3/html5/thumbnails/68.jpg)
![Page 69: Supporting Young Adults with kidney disease project board 14 th May 2012 Elisabeth Buggins Chair of NHS Kidney Care Supporting Young Adults with kidney](https://reader035.vdocument.in/reader035/viewer/2022062712/56649c7e5503460f949346b3/html5/thumbnails/69.jpg)
Erm I had a boyfriend when all this happened, erm but when it did all happen he, it was too much for him. Erm, which I
completely understand, cos it was too much for me, let alone someone who is
just watching. Erm, so he left.
![Page 70: Supporting Young Adults with kidney disease project board 14 th May 2012 Elisabeth Buggins Chair of NHS Kidney Care Supporting Young Adults with kidney](https://reader035.vdocument.in/reader035/viewer/2022062712/56649c7e5503460f949346b3/html5/thumbnails/70.jpg)
Like I realised who my real friends were actually, because there were some people I was there for a lot, during their times and
the ones I expected to be there weren’t there
![Page 71: Supporting Young Adults with kidney disease project board 14 th May 2012 Elisabeth Buggins Chair of NHS Kidney Care Supporting Young Adults with kidney](https://reader035.vdocument.in/reader035/viewer/2022062712/56649c7e5503460f949346b3/html5/thumbnails/71.jpg)
![Page 72: Supporting Young Adults with kidney disease project board 14 th May 2012 Elisabeth Buggins Chair of NHS Kidney Care Supporting Young Adults with kidney](https://reader035.vdocument.in/reader035/viewer/2022062712/56649c7e5503460f949346b3/html5/thumbnails/72.jpg)
sometimes I think their life’s on hold as well. I mean me dad he hardly
sleeps, bless him, because he worries and sometimes I get poorly through the night and erm he’s always up
with me through the night and stuff like that and I think, ‘well he’s not
getting any younger and he’s not fit and healthy himself’ So I worry that
I’m putting too much stress on them.
![Page 73: Supporting Young Adults with kidney disease project board 14 th May 2012 Elisabeth Buggins Chair of NHS Kidney Care Supporting Young Adults with kidney](https://reader035.vdocument.in/reader035/viewer/2022062712/56649c7e5503460f949346b3/html5/thumbnails/73.jpg)
![Page 74: Supporting Young Adults with kidney disease project board 14 th May 2012 Elisabeth Buggins Chair of NHS Kidney Care Supporting Young Adults with kidney](https://reader035.vdocument.in/reader035/viewer/2022062712/56649c7e5503460f949346b3/html5/thumbnails/74.jpg)
![Page 75: Supporting Young Adults with kidney disease project board 14 th May 2012 Elisabeth Buggins Chair of NHS Kidney Care Supporting Young Adults with kidney](https://reader035.vdocument.in/reader035/viewer/2022062712/56649c7e5503460f949346b3/html5/thumbnails/75.jpg)
You know one of those people that like out there that wouldn’t be able to handle me, because of what I’ve
got, but I’ve got a lot of baggage, do you know what I mean
...obviously people don’t want to take the responsibility on. I do think it’ll be hard for me to find somebody
while I’m poorly.
![Page 76: Supporting Young Adults with kidney disease project board 14 th May 2012 Elisabeth Buggins Chair of NHS Kidney Care Supporting Young Adults with kidney](https://reader035.vdocument.in/reader035/viewer/2022062712/56649c7e5503460f949346b3/html5/thumbnails/76.jpg)
![Page 77: Supporting Young Adults with kidney disease project board 14 th May 2012 Elisabeth Buggins Chair of NHS Kidney Care Supporting Young Adults with kidney](https://reader035.vdocument.in/reader035/viewer/2022062712/56649c7e5503460f949346b3/html5/thumbnails/77.jpg)
The only thing erm I worry about was having children...and that was, that’s,
that’s it really...and I’ve said I’ll be really disappointed and heartbroken
if I can’t have children.
I do a lot of my own research on the internet, I do type, you know, having a baby and stuff like that, I search it
all
![Page 78: Supporting Young Adults with kidney disease project board 14 th May 2012 Elisabeth Buggins Chair of NHS Kidney Care Supporting Young Adults with kidney](https://reader035.vdocument.in/reader035/viewer/2022062712/56649c7e5503460f949346b3/html5/thumbnails/78.jpg)
And Dr [name] had said like ‘oh you do want to make sure you have
children sooner rather than later’ and at the time when he told me, and I
was about 18 or 19 I was like ‘oh my god I’m not even on the doctorate, and by the time I get on it then I
need to be about like getting pregnant or having a baby and then I’ll have to quit work and do this!’...it
doesn’t work like that.
![Page 79: Supporting Young Adults with kidney disease project board 14 th May 2012 Elisabeth Buggins Chair of NHS Kidney Care Supporting Young Adults with kidney](https://reader035.vdocument.in/reader035/viewer/2022062712/56649c7e5503460f949346b3/html5/thumbnails/79.jpg)
Young adults with kidney disease need access to services which can support them to manage disclosure of their condition to others.
Improving social support for young adults is not just about providing opportunities for them to meet with other renal patients (although this was perceived as extremely helpful) but was also about supporting them to maintain and manage relationships outside the Renal Service.
![Page 80: Supporting Young Adults with kidney disease project board 14 th May 2012 Elisabeth Buggins Chair of NHS Kidney Care Supporting Young Adults with kidney](https://reader035.vdocument.in/reader035/viewer/2022062712/56649c7e5503460f949346b3/html5/thumbnails/80.jpg)
Support for carers was identified as an important issue. The concept of carers for young adults needs to be extended from parents to include siblings, friends and partners.
This research has shown that these groups may have specific information and support needs.
All young adults and particularly young women have information needs in relation to fertility and future reproduction.
![Page 81: Supporting Young Adults with kidney disease project board 14 th May 2012 Elisabeth Buggins Chair of NHS Kidney Care Supporting Young Adults with kidney](https://reader035.vdocument.in/reader035/viewer/2022062712/56649c7e5503460f949346b3/html5/thumbnails/81.jpg)
Thank you to… NHS Kidney Care
Heather Langham (Nottingham and Derby) Matt Tomlin (Nottingham and Derby) Wendy Hope (East Midlands Renal
Network) Cathy Johnson (Derby) Dr Charlotte Bebb (Nottingham) Dr Catherine Byrne (Nottingham)
The young adults who participated in the project
![Page 82: Supporting Young Adults with kidney disease project board 14 th May 2012 Elisabeth Buggins Chair of NHS Kidney Care Supporting Young Adults with kidney](https://reader035.vdocument.in/reader035/viewer/2022062712/56649c7e5503460f949346b3/html5/thumbnails/82.jpg)
Supporting Young Adults with kidney disease
Project learning sustainability14th May 2012
Paul HardenClinical Advisor, NHS Kidney Care
![Page 83: Supporting Young Adults with kidney disease project board 14 th May 2012 Elisabeth Buggins Chair of NHS Kidney Care Supporting Young Adults with kidney](https://reader035.vdocument.in/reader035/viewer/2022062712/56649c7e5503460f949346b3/html5/thumbnails/83.jpg)
NHS Kidney Care website:http://www.kidneycare.nhs.uk/_Ourworkprogrammes-Preparation-Supportingyoungadultswithkidneydisease.aspx
NHS Network forum:http://www.networks.nhs.uk/nhs-networks/supporting-young-adults/messageboard