Supporting Young Adults with kidney disease project board 14 th May 2012 Elisabeth Buggins

1. 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

2. Agenda

3. Supporting Young Adults with kidney disease Project Board update 14th May 2012 Clare Beard Programme Lead, NHS Kidney Care

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 Project progress (1 of 4)

5. 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)

6. 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)

7. 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

8. Supporting Young Adults with kidney disease Evaluation update 14th May 2012 Grace Sweeney Head of Research & Evaluation NHS Kidney Care

9. Supporting Young Adults with kidney disease Communications update 14th May 2012 Clare Beard Programme Lead, NHS Kidney Care

10. Achievements • Resource pack • Developed, including tools from project groups, and guide to further resources. • How-to guides • Completed 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 training • Project groups have attended an e-seminar on conference poster development, and had one-on-one training where necessary • BRS posters • All groups presented posters at BRS. East Midlands groups gave oral presentations on their work.

11. Next steps • Ethnographic studies • Promote 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 conference • NE and EM groups have had abstract accepted for poster presentation at conference in June

12. NHS Kidney CareSupporting Young Adults with kidney disease Project assets map April 2012

13. 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

14. Supporting Young Adults with kidney disease 2010-2012

15. Key contacts and links: Project board Learning Network Other NHS KC work programmes EB and BM contact with SS RCP transition group BRS, RA BAPN BKPA, KPAs Young@NKF YPHSIG, YPHDH, You’re Welcome Teenage cancer survivors projects NHS Diabetes, NHS Liver Care Local authority young people leads Connexions Products/ tools: Website Forum YouTube E-seminar Literature review slide set Oxford YAC film YAC Reading How to guide Abstracts, posters, presentations, articles Facebook How to Guide In development: How to guides on SAF, immunosuppression… E-seminars Evaluation report App(s) Local products: Facebook pages, Twitter, Apps Newsletters Pathways Project group models Self assessment framework tool Educational resources Ready Steady Go transition documents Immunosuppression protocol 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-bulletin Journal of Renal Nursing National Youth Agency website Children and Young People Now Kidney Life, Derby Telegraph BBC Radio Oxford, Jack FM Newcastle Evening Chronicle Nottingham Evening Post BBC Oxford TV, BBC Radio Tees Synapse (Trust magazine at Nottingham) Your Local Guardian 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

16. Project champions Existing: • Elisabeth Buggins • Beverley Matthews • DonalO’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

17. 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

19. Some asset maps include: • Risks: e.g. NHS reforms and funding • Strategies to sustain: e.g. links to DH and RCP

20. Supporting Young Adults with kidney disease East Midlands Research Findings 14th May 2012 Emma Coyne Clinical Psychologist in Renal Services Nottingham University Hospitals NHS Trust

21. Dr Emma Coyne Renal Clinical Psychologist This work is part of a national NHS Kidney Care Project

22. Why are so few of our young adults dialysing at home? • 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.

23. Aim and Design • 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.

24. Results • 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.

25. 3 Main themes

26. Wanting to make an informed choice

27. Wanting to make an informed choice

28. Acute start – not having enough information ’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.

29. Wanting to make an informed choice

30. Pushed towards PD 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.

31. Wanting to make an informed choice

32. The experience was not what I was prepared for 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.

33. I’m not sure I want all this responsibility

34. I’m not sure I want all this responsibility

35. Being ready and able to accept the responsibility 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.

36. I’m not sure I want all this responsibility

37. Need to protect self –worrying about infection/ tube …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.’

38. I’m not sure I want all this responsibility

39. Finding it challenging …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!’,

40. Struggling to maintain a normal life

41. Struggling to maintain a normal life

42. No longer independent 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

43. Struggling to maintain a normal life

44. Feeling self conscious 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?

45. Struggling to maintain a normal life

46. Constraints on normal 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.

47. Conclusions • 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.

48. Conclusions • 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.

49. 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

50. Friends, family and sex: Exploring the impact of kidney disease on young adults’ relationships Dr Emma Coyne Renal Clinical Psychologist This work is part of a national NHS Kidney Care Project