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

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

Supporting Young Adults with kidney disease

Project Board update14th May 2012

Clare BeardProgramme Lead, NHS Kidney Care

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

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)

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)

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

Supporting Young Adults with kidney disease

Evaluation update 14th May 2012

Grace SweeneyHead of Research & Evaluation

NHS Kidney Care

Supporting Young Adults with kidney disease

Communications update 14th May 2012

Clare BeardProgramme Lead, NHS Kidney Care

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.

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

NHS Kidney CareSupporting Young Adults with

kidney diseaseProject assets map

April 2012

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

Supporting Young Adults with kidney disease 2010-2012

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

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

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

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

Some asset maps include:

• Risks: e.g. NHS reforms and funding

• Strategies to sustain:e.g. links to DH and RCP

Supporting Young Adults with kidney disease

East Midlands Research Findings 14th May 2012

Emma CoyneClinical Psychologist in Renal Services

Nottingham University Hospitals NHS Trust

Dr Emma Coyne

Renal Clinical Psychologist

This work is part of a national NHS Kidney Care Project

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.

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.

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.

’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.

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.

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.

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.

…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.’

…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!’,

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

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?

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.

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.

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.

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

Dr Emma Coyne

Renal Clinical Psychologist

This work is part of a national NHS Kidney Care Project

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).

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.

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).

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.

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.

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.

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

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.

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.

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.

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

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.

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.

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

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.

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.

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.

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

Supporting Young Adults with kidney disease

Project learning sustainability14th May 2012

Paul HardenClinical Advisor, NHS Kidney Care

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