what will the parents say

Improving QualityNHS

Parents round table discussionWHAT WILL THE PARENTS SAY?

CONTENTS

SETTING THE SCENE

THE ROUND TABLE EVENT

KEY MESSAGES

DISCUSSION

MOVING FORWARD

APPENDIX 1 - CASE STUDY

APPENDIX 2 – LIST OF ATTENDEES

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Parents round table discussion - What will the parents say? 3

SETTING THE SCENE

This document describes workundertaken by NHS KidneyCare around young people withkidney disease, and the issuesfaced by their families andcarers. The emergent themeshave significant alignment withcurrent NHS Improving Qualityand NHS England nationalprogrammes, including LongTerm Conditions, Experience ofCare, Transition from Paediatricto Adult Services and LivingLonger Lives.

NHS Kidney Care closed on 1April 2013, when NHSImproving Quality became theorganisation responsible fordriving improvement across theNHS in England. Hosted byNHS England, NHS ImprovingQuality works to provideimprovement and changeexpertise to support improvedhealth outcomes. It is inalignment with the needs andchallenges of the NHS, bringingtogether and building on thewealth of knowledge, expertiseand experience of all that hasgone before. The legacyimprovement bodies that werebrought together to form NHSImproving Quality are: NationalCancer Action Team, NationalEnd of Life Care Programme,NHS Diabetes and Kidney Care,NHS Improvement, and NHSInstitute for Innovation andImprovement.

Prior to this, NHS Kidney Carewas engaged in a number ofservice improvementprogrammes aimed atimproving the transitionprocess and experience frompaediatric to adult services foryoung adults with kidneydisease.

In 2012 Ipsos MORI wascommissioned by NHS KidneyCare to carry out threeethnographic studies relating tothe roles of carers, youngadults and parents. The firststudy, Who cares for the carer?,highlighted the issues that mayexist between the carers ofpeople with kidney disease andthose who they care for. Thesecond report, Walking in theirshoes: Understanding the livesof young adults with long-termconditions, involved a series ofethnographic studies providingan in-depth look at the lives ofyoung adults with end stagekidney disease. The third studywas commissioned to examinethe perspective of parents1. Thisfinal ethnographic studyhighlights the impact of kidneydisease from the point of viewof parents, including thedifficulties parents faceemotionally and socially as theindividual health careprofessionals (HCPs), healthcare service organisations andprocesses they have dealt withfor a number of years change.

At the same time there is a shiftin responsibility of themanagement of their child’scare from parents to the youngpeople themselves.

The case study in appendix 1describes some of the issuesfaced by a parent of a youngadult with a long termcondition.

Interviews with four parents,carried out as part of the study,identified five themes that werecommon to all of theirexperiences:

• The difficulty parents face in letting go of their child and allowing them to take responsibility for their own care

• The lack of continuity of care between paediatric and adultservices

• The impact on the family of being a parent of a young adult with a long-term condition

• The way that parents’ expectations, as well as thoseof the young adult, are managed

• Concerns about the future.

1NHS Kidney Care. The Parental View of Kidney Care: An ethnographic study into parents of young adults with kidney disease. March 2013. http://webarchive.nationalarchives.gov.uk/20130504185629/http://kidneycare.nhs.uk/resources/?dispFolder=458#

4 Parents round table discussion - What will the parents say?

THE ROUND TABLE EVENT

On 20 March 2013, NHSKidney Care hosted a roundtable event to discuss the keythemes highlighted by theethnographic work on theparents’ experiences. Attendeeswere shown a number ofedited film highlights from theinterviews with parents, andwere invited to discuss theissues that were raised with aview to identifying the barriersas well as potential solutions.

Attendees consisted of a parentrepresentative of a young adultwith a long term condition aswell as HCPs from acrosskidney services including a renalconsultant, a youth worker,renal nurse consultants and aclinical psychologist. In additionthere were representatives fromthe voluntary sector, policyinfluencers and serviceimprovement leads. The full listof attendees is provided inappendix 2.


KEY MESSAGES

• Transition can lead to parentsexperiencing a change in the relationship they have had with their child, and a loss of relationships with the team ofHCPs who have provided careup to transition. New relationships need to be developed and nurtured.

• The time spent in transition is, on the whole, too short and often unstructured. Transition needs to start earlier and take place over two to three years, supportedby a programme and regular meetings to achieve the objectives prior to transfer. The time spent in transition will help parents to build relationships and develop trust with adult services, and will also help build linkages between paediatric and adultservices.

• Health and social care professionals need to provide appropriate support and information so parents feel more confident to ‘let go’ of their children, and allow them to develop the skills that are necessary to gain independence. In addition, parents need support in understanding the changes to confidentiality when their young person becomes an adult.

• Peer support for parents needs to be developed so that they can spend separate time with people who are going through similar experiences. Peer support is also important for the young adult themselves.

• Health care professionals in both paediatric and adult services also need to develop the skills necessary to recognise and meet the needs of parents who struggle with letting go. The HCP needs to be ‘the right person for the job’ rather than someone who is just interested in it.

• Not all young adults transition from paediatric departments; some present directly to adult services. Thisgroup will not have had a transition preparation and theyoung adult and their familiesmay have additional support needs.

• Young adults need a flexible service designed for them that follows the transition pathway and is not based in either paediatric or adult care. Adult clinicians should meet the young people in thepaediatric environment and the paediatric clinicians should then have joint clinics with the adults in the adult environment. Joint clinics should be held in both environments or separately; the service should be shared between both environments.

• The voluntary sector has a key role to play in terms of supporting the provision of timely information, counselling services, funding for youth workers and funding for outings, trips andrespite services.

• Integrated transition is not routinely happening in England and requires a policy driver.


DISCUSSION

Despite isolated pockets ofgood practice, the lack ofcontinuity in care for youngadults moving from paediatricto adult services, as describedin the video clips, wasrecognised by the group. Inpart due to the small numberof young adults with kidneydisease, many adult services areyet to recognise the specificneeds of this group who mayfeel a loss of support attransfer. Currently, transitionmay consist of one meetingbetween the young adult, theirparents or carers, and one ortwo members of each of thepaediatric and adult teams. Thegroup agreed that transitionneeds to start earlier and takeplace over a period of two tothree years in order to buildrelationships and trust betweenall parties - parents, carers,young adults - as well asmembers of both paediatricand adult services.

Abrupt transfer can haveserious consequences, such asthe failure of a transplant, if theyoung person is not equippedwith the necessary life skills tomanage themselves and theircondition. The ethnographicwork carried out by Ipsos MORIshows that while young adultsare anxious to gainindependence, their parentsand carers often find it difficultto let go. This two-way tug isby no means unique to parentsand children with long termconditions; however the needof these young adults tocarefully manage theirmedication, diet and lifestyle inorder to control their conditionoften leads to further anxietyand reluctance to let go on thepart of the parent. Health careprofessionals in both paediatricand adult services need torecognise these tensions andhelp to support both parentsand young adults to gain the

skills necessary forindependence as transitionapproaches. Furthermore, bothadult and paediatric serviceswere highlighted as being ill-equipped to deal with thespecific needs of young adults.

An unstructured and abrupttransition can also lead to alack of trust in adult services.Parents often find it difficult tobuild the same relationshipwith members of the adultteam that may have existedwithin paediatric services. Assuch, the ability of parents totrust the professionals in adultservices is likely to be impaired.This is compounded by thehandover being unavailable tothe larger multidisciplinaryteam (MDT), so the staffinvolved with the parent andyoung adult will know little ifanything about the individuals.


Paediatricians are great with young children, but not so much withyoung adults – paediatricians need more experience with adolescence,need to help the parent to let go, but paediatricians are not so goodthemselves at letting go. Paediatricians need to get involved with theadult world so that they can understand what the changes are going tobe – there’s no preparation, needs to be a gradual process.

For a parent who has beenactively involved in the care oftheir child for many years,handing over the responsibilityof care to the young personthemselves and the adultservice that they, the parent,have not had the opportunityto develop a relationship with,can be very difficult. The factthat parents no longer have theright to be involved in thedecision making for their childcan only exacerbate theanxieties that a parent may feelabout letting go. Although ayoung adult can choose to givetheir parent access toconfidential information, attransition a parent no longerhas the right to be involved indecision making, nor take partin consultations. Health careprofessionals in adult servicesneed to gain the skills to beable to provide a similar level ofsupport to parents that theymay have received in paediatriccare, without breakingconfidentiality. It was agreed byall that the confidentialityclause can be a barrier tointegrated service delivery.

However, a perceived lack oftrust of adult services bypaediatric services may alsocontribute to the lack of trustheld by young adults and theirparents. Having cared for theyoung person for many years,paediatricians and paediatricteams may think that theyknow best and find it hard tolet go themselves.

Health care professionals,particularly those in adultservices, need skills to addressthe needs of parents who maybe feeling anxious and cut offfrom being involved in the care

of their child. Within paediatricservices parents often developstrong bonds with healthprofessionals who they are ableto contact for support andadvice in dealing with theirchild’s condition. This support isoften absent in adult services,where staff may lack the skillsto deal with anxious parentswho they may view as difficult,leaving parents feeling isolatedand bereft.


Transition involved one meeting with twopeople from each centre – a lot more needs tobe done. At 18 they cut you off as a parent; it’svery hard when you’ve looked after them;someone you’ve cared for… consistentlycared for.

Relationships need work, it takes a long time to build trust with newclinicians but there is also the paediatric-adult relationship… thepaediatric team need to get to trust us in adult services.

Clearly, work needs to be doneto develop and maintain therelationships between parentsand carers, young adults,paediatric and adult services.However, building theserelationship does not need tobe a formal process; indeed foryoung adults informal meetingsoutside of the clinical settingmay often be moreappropriate.

Questions were also raisedabout the type of service thatyoung adults are transitionedinto. Adult kidney services, forexample, are dominated byelderly people; as such,consideration could be given toa cross cutting young adultservice that could address theneeds of adolescents andyoung people where they canmeet people of the same age.Parents and young adultsshould be provided with arange of choices for their care.

While some young adults enjoyand look forward to transition,others find the prospect scaryand overwhelming. Theappropriate timing of transitionwill vary depending on theindividual’s level of maturity.Young people mature atdifferent ages as they gothrough adolescence, but ayoung person who has grownup with a long term conditionand who may have been

protected from many of life’srealities may mature later thantheir peers. Parents are oftenvery aware of the skills that arenot yet developed in their child,so there is a need to helpidentify the skills a youngperson needs to learn; parentshave a role to play here. Inturn, by equipping a youngperson with these skills, parentsmay feel more confident aboutletting go.


At GOSH2 when I was there I always knew there was someone I couldtalk to, now I don’t know who to turn to.

What are they transitioning into? Standardadult service needs to change to be a youngadult service – there is an issue with smallnumbers, young adults are lost in a sea ofservices for the elderly. There needs to be aservice for young adults.

2Great Ormond Street Hospital


You have to say to parents that you are accessible, that they cancontact you, parents don’t want to be excluded… but it has to be theright person to do this job.

Timing of transition may alsodepend on where the individualyoung adult is on theirtreatment pathway; forexample if a young person ischanging their treatmentmodality at that time, transitionis likely to be inappropriate.Stability is important. Thesupport needed for the parentsand a young adult who has anunplanned requirement for

renal replacement therapy willalso be unique. Fundingmechanisms need to bedeveloped to support flexibilityof timing the transfer of careand to allow for joint workingwithin paediatric and adultcare.

The timing of transition alsoneeds to be considered fromthe perspective of the parent;

some are ready to engage intransition while others are not.Some recognise the need fortheir child to gainindependence while others,rightly or wrongly, perceivetheir child as ill-equipped tomanage their own health.

Examples of having a ‘gobetween’ to support youngadults were discussed;University HospitalsBirmingham NHS FoundationTrust employs a youth workerto support young people byspending time with theminformally. This may include, forexample, visiting young peopleon the wards, activity days suchas going to Alton Towers and,when appropriate, home visits.The bond that developsprovides support to the youngadult by allowing the youthworker to act as a go betweenwith health care professionalsand, if appropriate, theirparents, through having signedconsent from the young adultwhich is reviewed every sixmonths. Having flexibility in thesystem to recognise andmanage these different needscould go a long way tosupporting young adults andtheir parents throughtransition.


There needs to be flexibility in the way we deal with things, transitionclinics, youth workers, we need to build good rapport with the youngpatients and the parents alike.

She may be 19 but she’s not ‘an adult’, she’s nothad the life experience of others… last yearshe didn’t take her medication and ended upin hospital.

Patients say it’s very scary… paediatricservices can be sociable and fun with games,adult services are very different. Some reallylike transition some don’t, some say theirparents get left out, many value their parents’involvement it’s mixed.

MOVING FORWARD

The group was asked to consider how any of the barriers to a smooth transition could be overcome.The solutions put forward are summarised the tables below:


Top ten tips - Developing a list of top ten thingsthat health care professional should be asking andtelling parents.

Peer support - Providing platforms to develop andencourage peer support for both parents and youngadults.

Electronic resources - Development of platformssuch as Renal PatientView for parents; raiseawareness and further development of resourcessuch as Facebook.

Practical advice for parents - Provide practicaladvice for parents in the form of a guide offeringclarity on what advice and support there is, as wellas sign posting to reliable sources of information.

Evidence of individual needs - Ask parents andyoung adults to provide a checklist of what theywant when they go to adult services, in order toprovide the right support for parents and thepatients.

Pre-transition day/workshop - Host pre-transitiondays and workshops for parents and young adults,providing education, information, and anopportunity to meet others in similar circumstancesto their own.

Change perceptions - Moving from paediatric toadult care is seen by many as a negative step;instead health and social care professionals can helpto celebrate the move akin to graduating fromsecondary school to university.

Incentives - Developments of incentives such asCQUINs and best practice tariff.

Through the national YoungAdults network

HCPs, Young Adult, Parents,national network

HCPs, voluntary sector

HCPs, youth workers, voluntarysector, social care

HCPs

HCPs, youth workers, voluntarysector, social care, schools andeducation

Policy makers, HCPs

Policy makers, commissioners,voluntary sector, social care

PRAC

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L SO

LUTI

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SOLUTION RESPONSIBILITY OF...


Empower health care professionals - Providehealth care professionals with the skills they need tosupport parents and young adults in an area wherespecialists can provide advice in a secureenvironment.

Empower parents - Provide parents with the skillsnecessary to change the perception of their role andtheir child’s and to feel safe in letting go.

Empower young people - Provide young peoplewith confidence and self-esteem throughdeveloping the skills necessary to take control andmanage their own health and healthcare; peersupport; education; care planning and the supportof health and social care workers.

Choice - Empower parents and young adults byproviding flexibility and choice about where, whenand how they make the transition from paediatricto adult care.

Motivational interviewing - Provide support inmotivational interviewing techniques to help healthcare professionals support self-care

Policy makers, HCPs, voluntarysector, commissioners

HCPs, voluntary sector

HCPs, youth workers, voluntarysector

Commissioners, HCPs, nationalnetwork

Commissioners, HCPs, voluntarysector

DEVE

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RAIN

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Liaison officer - Support the role of a liaison officerfor parents to support the patients and workbetween the healthcare professionals and theparents, such as those provide by CLIC Sargent.

Clinical worker specialist - Support and developthe role of clinical work specialist/key worker to actas a central player between services and ensure thatappropriate support is provided for young peopleand their parents.

Youth workers - Youth workers have a unique roleto play in developing close, informal relationshipswith young adults and have an important role toplay in helping them gain the skills necessary tomanage their own condition, giving parents theconfidence to let go.

Link person - Introduce a link person, potentiallyprovided by voluntary services, to aid in sign postingto other parents and other young adults.

Specialist psychological support - Psychologicalsupport for parents, families and young people whostruggle during transition and with adult services.

Voluntary sector, HCPs,commissioners

Policy makers, commissioners,HCPs, voluntary sector, socialcare

Policy makers, commissioners

Commissioners, voluntary sector

Commissioners

DEVE

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Finally, the group recognised that while the number of parents of young adults with kidney diseasemay be small, their needs are not. However, many of these needs are not unique to kidney disease.At a time when resources are scarce, health and social care professionals across all long-termconditions should look to work together to provide the expert, specialist support that parents ofyoung adults require. Transition is well positioned in the new improvement body, NHS ImprovingQuality, and has already been identified as one of the main programmes of work. The legacy of thiswork is now reflected to Domains 2 (Long Term Conditions) and 4 (Experience of Care) in NHSImproving Quality. While the focus has previously been around disease speciality areas,commissioners and policy makers now need to look at how transition can best be done across alllong-term conditions.


APPENDICES

APPENDIX 1 - CASE STUDY

From the age of five, Ebonywas under the care of GreatOrmond Street Hospital(GOSH), as she was born with ahole in her heart, and wouldsporadically turn blue. Whenshe was 10, Ebony wasdiagnosed with pulmonaryhypertension. The side effectsof the disease (shortness ofbreath and tiredness) meantthat she rarely attended school,and instead was cared for full-time by her mother, Shirley.Ebony subsequently had a heartand lung transplant onNovember 30th 2008, whenshe was 14 years old.

Ebony and Shirley cannotemphasise enough how goodthe care and support was thatthey received from GOSHthroughout their time there,and in the run up to andfollowing the transplantation.However their experience oftransition to the adult hospital,and the care when they arrived,has been very different.

Because Ebony’s condition israre and the family lives in anisolated part of the country,they had little choice of whichadult unit to transition to. Oncea hospital had been decided,the transition itself consisted ofone non-clinical meeting at theadult hospital, beforeappointments commenced.

The difference in supportreceived from GOSH comparedwith the new hospital wasmarked. The doctors andnurses at GOSH took a holisticapproach to care, looking afterthe entire family. There weresocial workers, dieticians andother support workers outsideof the core medical teamavailable to the entire family,which was completely lost afterthe move. Moreover, Shirleyfelt like she had gone frombeing a full-time carer of Ebony,to being completely in the darkabout Ebony’s treatment.

When she was 18, Ebonymoved in with her father, andmade little effort to stay intouch with her mother. Thismeant that Shirley lost the closerelationship she had built upwith her daughter over theyears and, on a more practicallevel, lost her benefits too. Thiswas a very hard changeconsidering Shirley had builther life and home aroundcaring for Ebony. At a similartime, Ebony had a disabilityassessment, which concludedthat there was nothing wrongwith her. This meant thatEbony lost her motabilityallowance and other benefits,impacting upon herindependence and knockingher confidence.

On top of this, Ebony does notqualify for free prescriptions -even though her medicationsare keeping her alive. Last year,Ebony took an apprenticeshipas an accountant, but in March2013 was made redundant dueto the amount of time she hasto take off for hospitalappointments and illness,further knocking herconfidence.


APPENDIX 2 - LIST OF ATTENDEES

Sue Cox Guys and St Thomas NHS Foundation Trust

Emma Coyne Nottingham University Hospitals NHS Trust

Rachel Gair Plymouth Hospitals NHS Trust

David Gerrett NHS Commissioning Board (NHS England)

Paul Harden Oxford University Hospitals NHS Trust

Shirley Hargrave Parent representative

Helen Hoyland NHS Kidney Care/NHS Improving Quality

Billie Ing Ipsos MORI

Rosemary Marci British Kidney Patient Association

Beverley Matthews (Chair) NHS Kidney Care/NHS Improving Quality

Tracey Sinclair Young@NKF

Grace Sweeney NHS Kidney Care/NHS Improving Quality

Mark Thompson University Hospital Birmingham NHS Foundation Trust

Jane Whittome National Cancer Action Team/NHS Improving Quality


Report written by Michelle Barclay, NHS Improving Quality

@NHSIQwww.nhsiq.nhs.uk

To find out more about NHS Improving Quality:

Improving health outcomes across England byproviding improvement and change expertise

[email protected]

Improving QualityNHS

Published by: NHS Improving Quality - Publication date: February 2014 - Review date: February 2015© NHS Improving Quality (2014). All rights reserved. Please note that this product or material must not be used for thepurposes of financial or commercial gain, including, without limitation, sale of the products or materials to any person.

what will the parents say

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