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Transition of care for children and young people
The Care Quality Commission’s expectations
2
Our purpose
Our purpose:
We make sure health and social care services provide people with
safe, effective, compassionate, high-quality care and we encourage
care services to improve
3
Our approach to inspection and regulation
We ask these five questions of all services:
• Is it safe? Are people protected from abuse and avoidable harm?
• Is it effective? Does people’s care and treatment achieve good outcome and
promote a good quality of life, and is it evidence-based where
possible?
• Is it caring? Do staff involve and treat people with compassion, kindness,
dignity and respect?
• Is it responsive? Are services organised so that they meet people’s needs?
• Is it well led? Does the leadership, management and governance of the
organisation assure the delivery of high-quality patient-centred
care, support learning and innovation and promote an open and
fair culture?
4
Transition of care for children and young people
Children, young
people and
those close to
them
Clear processes and
pathways
Strategic planning between children
and young person services and adult
services, including commissioning
Effective multi-
disciplinary team
communication
Identification of individual
needs, for both young person
and family/carers, including:
• Psychological
• Physical
• Equipment
• Support
• Equality and diversity
Joint clinics as part
of the transition
process/early
preparation
Monitoring impact and
outcome of transition plans
Effective communication with
young person and family/carers
and provision of good information
The feedback of young people
and families is used in service
design and development
5
The Health and Social Care Act 2008 (Regulated Activities) Regulations 2014
Some regulations to keep at the forefront:
• Regulation 9: Person-centred care
• Regulation 10: Dignity and respect
• Regulation 12: Safe care and treatment
• Regulation 13: Safeguarding service users from abuse and improper treatment
• Regulation 17: Good governance
6
Thank you…
Questions?
Paediatric Long Term Conditions & Transition
Thursday 28 June 2017
Dr Adrian Hughes & Dr Christian De Goede
HealthAdolescence
What is transition?
Consultant paediatricianSpecialist nurseChildren’s wardPlayroom
PhysicianSpecialist nurseMedical Assessment UnitAdult wardCafe
What is transition?
AdultChild
‘We get told off enough in school’,
‘take an interest and please treat us like people’
2
PaediatricsAdult
Primary Care
Transition
Examples of good practice• Clear pathway
• Key worker / named worker
• Start early – preparation
• Adult – Paediatric link
• Shared adolescent clinics
• Person centred
• Communication – Health Passport
• Involve young people in service development
Background to project
• North West Coast Children’s and Maternity Strategic Clinical Network (SCN) Priorities– Reduction in unplanned emergency admissions
– improved experience through Transition for Children and Young People (CYP) living with long term conditions (Asthma, Epilepsy and Diabetes)
• Identify – key themes
– areas of best practice
– Barriers
– challenges
• to inform future commissioning and provision of services
Methodology
• 4 self assessment tools
– based on national best practice
– developed with clinical input
• Emailed to all Provider Trusts and CCGs across North West Coast region
Standards
• Diabetes Transition Service Specification, NHS England, January 2016
• National Review of Asthma Deaths – Royal College of Physicians, 2014
• NICE Quality Standard 27 - Epilepsy in children and young people
• NICE Guidance 43 Transition from children's to adults' services for young people using health or social care services
Provider Trust Response
Alder Hey Children's NHS Foundation Trust
Betsi Cadwaladr University Health Board
Countess of Chester NHS Foundation Trust
East Lancashire Hospitals NHS Trust
Mid Cheshire Hospitals NHS Foundation Trust
Lancashire Teaching Hospitals NHS Foundation Trust
Nobles Hospital, Isle of Man
University Hospitals of Morecambe Bay NHS Foundation Trust
Southport and Ormskirk Hospital NHS Trust
Wirral University Teaching Hospital NHS Foundation Trust
Warrington & Halton Hospitals Foundation NHS Trust
St Helens and Knowsley Teaching Hospitals NHS Trust
Stockport NHS Foundation Trust
East Cheshire NHS Trust
Blackpool Teaching Hospitals NHS Foundation Trust
Services for CYP with long term conditions
Diabetes Asthma Epilepsy
Pathway 92% 71% 50%
Named consultant 100% 80% 79%
Named nurse 100% 69% 71%
Named Physio 53%
MDT 100% 31%
Care plan 100% 69% 92%
Mental Health 82% 8% 0%
Annual Review 100% 11% 75%
Paediatric Best Practice Tariff (BPT)
• 2012/13 Mandatory BPT for paediatric diabetes
• An annual payment for treatment of every child under
the age of 19 with diabetes, provided strict criteria are
met.
• The annual value and criteria is decided by NHS
England and Monitor
• 2014/15 the value is £2988 (cf 2012/13 £3189)
Impact of Best Practice Tariff
Paediatric Diabetes Care in the North West
P< 0.01
Staffing levels before and after Best practice tariff
Transition for specific services
Diabetes Asthma Epilepsy
Policy/Pathway 100% 33% 47%
Lead 78% 7% 20%
Keyworker 90% 14% 7%
joint clinics 82% 21% 14%
Health passport 33% 23% 80%
Individual plan 91% 25% 47%
Future development 85% 50% 64%
Transition results: Diabetes
• Diabetes more developed than Asthma/Epilepsy
– Why? Best Practice Tariff?
• Lack of adolescent clinics (Adult services)
PaediatricsAdult
Primary Care
Transition results: Asthma
‘too few patients to warrant transition’
‘lack local adult neurologist/nurse’
Transition results: Epilepsy
Transition results: Other
• Variation across the patch– some good examples
• Ready Steady Go used in places
• CQUIN in one CCG
CCG Results Summary
• Low response rate Blackburn with Darwen CCGEast Lancashire CCGBlackpool CCGFylde and Wyre CCGLiverpool CCGCumbria CCGWarrington CCGWirral CCGVale Royal CCGSouth Cheshire CCG
Commissioners and transition
Commissioning for transition 43%
Lead for transition 29%
Service Spec for transition 17%
Provider contracts for transition 50%
Joint work with providers 20%
Diabetes/Asthma/Epilepsy
• Majority of responses No/Don’t Know/No response
– CCG does not hold this information
– Not within current specification
– CCG not commissioned along clinical disease lines
– Commissioned by someone else eg NHS England
• Asthma responses generally match those provided by providers
• Best practice tariff for Diabetes covers this
Transition seems to be provider led – not commissioned
Recommendations
• People
– Executive lead
– Lead clinician/champion
– Trust wide transition coordinator
– Named keyworker for each specialty
• Age appropriate facilities for adolescents
• Joint paediatric/adult clinics
Lack of understanding about me
Can I meet the consultant before I move
When I am admitted they may not know my story
Nothing to look at in adults waiting room and very busy
If I’m admitted can someone stay with me
Worries About transition Ideas to improve transition
Visit to adult clinic prior to move into adult care
Get the children to speak more in the paediatric clinic
Get to know the person
Activities and games in clinics
Hospital passport for patient with things like first aid, safety...
Engaging young people in service
What if I don’t understand
Better communication between consultants and GPs
Video on epilepsy transition by young people for young people
The best part about this project was making new friends and having a laugh a long the way.
Recommendations
• Commissioning leads for transition
• Explore CQUIN and best practice tariff
TransitionDiscussion & Questions
Dr. Candice Pellett OBEQueen’s Nurse
Transition Project Manager
The Queen’s Nursing Institute
Transition of Care
North West Transition Conference, 29th June 2017, Warrington
Progress to date - End of Year 1• Literature review version 3 – on website
• 3 on-line questionnaires – to go on website
• 10 Focus Groups undertaken: Birmingham, Sheffield, London x 3, Peterborough, Hull, Darlington, Durham –summary on website
• Blog x 2
• Twitterchat
• Talking Heads video – Walsall
• E-learning resource launched
• Resource promoted in nursing journals + conferencesNorth West Transition Conference, 29th June 2017, Warrington
Twitterchat
North West Transition Conference, 29th June 2017, Warrington
North West Transition Conference, 29th June 2017, Warrington
Future Activities – Start of Year 2• Resource feedback + surveymonkey
• Pilot Sites
• Resource Twitterchat (WeGPNs)
• E- newsletter
• Transition champions
• Promotional Photography of Young People
• Learning event – 10th November 2017 at RCGPsNorth West Transition Conference, 29th June 2017, Warrington
Transition of Care web pagewww.qni.org.uk
North West Transition Conference, 29th June 2017, Warrington
Any questions?
Thank you
North West Transition Conference, 29th June 2017, Warrington
A relationship- centered model of
careDr Constantina Chrysochou
The SRFT Renal Young
Adult Clinic
Josh, 21 ‘’Anxious’’
Renal disease tore my
life apart. I lost my job,
couldn’t play football,
lost my mates and
confidence. I’m anxious
and have no money to
come to clinic
Papiya, 17 ‘’Terrified’’
I crashlanded with renal
failure 2 wks before my
finals. I was in a bay
with 3 elderly ladies,
one died, one went to a
NH. There are no YA
here, I must be dying
too, why bother studying
How it all began
Callum, 16 ‘’Non-compliant’’
No one cared I saw my brother die in
front of me, all they cared about was
why wasn’t I taking tablets. I have a
chaotic family. Hospital don’t know I
can’t read, missed school. I didn’t
know I was missing appts or how to
take tablets
I was fired in
hospital, kidney
failure bankrupted
me and my mom.
I’ve not received
appt letters because
I’ve been living
wherever anyone
will have me
Luke, 18 ‘’Non- attender’’
Why was a service needed?
• ‘’Young people aged 10–19 years, defined by the
World Health Organization (WHO) as adolescents,
have experienced the least improvement in health
status of any age group in the British population
over the last 50 years.
• Adolescents have been assumed to be low users of
health services and adolescence understood as the
healthiest period of life. These assumptions have
not been true since the 1960s, yet their persistence
makes young people nearly invisible in a health
service that focuses on the middle-aged and
elderly and on young children.’’ Annual Report of the Chief Medical Officer 2012, Our Children Deserve Better: Prevention Pays
• YA- a different breed?
• The story of the SRFT YAC service
• The importance of holistic care
Lets talk about ‘Youth’
• Adolescence usually a time of good health
• Negotiating puberty is tough enough
• Momentous biological, hormonal,
psychological and developmental changes
YA – What’s going on in their
world?
• Children with chronic disease may have many
challenges imposed upon them
• CKD- poor growth, poor appetite, polyuria, restrictive diet, numerous medications, hypertension, proteinuria, CVS morbidity
• Missing out on schooling
YA – Now throw in Chronic
disease
• Increased brain
myelination and
synaptic pruning
• Results in a move
from concrete to
abstract thinking
• Leads to YA starting
to question their
identity and their
position in the world
Psychological development
and identity
Discordant maturation of the brain
systems that support decision-making
YA – a different breed?
15+
Limbic – risk,
reward,
appetite,
pleasure
seeking
emotion
24+
Pre-frontal–
self control,
mature
thinking,
inhibition
Peak rise in rebellious, risky behaviour/
substance use/ self harm/ depression 15
YA – a different breed?
15+
Limbic – risk,
reward,
appetite,
pleasure
seeking
emotion
24+
Pre-frontal–
self control,
mature
thinking,
inhibition
Stoplight task performance (Chien J et al, Dev Sci 2011)
The presence of peers increased
risk taking among adolescents (14-
19) but not adults (25-35)
Mean % of risky decisions Mean number of crashes
• 1/ 4 of secondary school pupils say they do
not get enough sleep
• Media and communications activities part of
the problem
• Use of smart phones has opened up a new
world of swift, flexible communications and
access to media
• Challenges and opportunities
Health behaviour and
lifestyle
What’s the reality
• The adult model of care is not designed
around individual YA biopsychosocial
development
• ? A process that addresses their
– Medical needs
– Psychosocial needs
– Educational/vocational needs
• Transfer not transition
What’s the reality
• The adult model of care is not designed
around individual YA biopsychosocial
development
• ? A process that addresses their
– Medical needs
– Psychosocial needs
– Educational/vocational needs
• Transfer not transition
842 patients referred to renal services (mean age 24)
23 on HD/PD
8 Transplants
16 deaths, themes of non-
compliance, poor engagement
68 patients transplanted 21% failed transplant
452 DNA’d their appts (17%), 208 had to be re-referred due
to DNAs
1288 admissions,
2801 bed days for 279 patients
233 moderate progressors(1-5ml/min/yr), 85 marked progression (>5ml/min/yr)
The 10 years before the YAC
Trophy Study
Knowledge of epilepsy during transition for young people with epilepsy
Janine Winterbottom, Julie Lynch & Jacqui Vinten
Transition for Young People (YP) with epilepsy
• Epilepsy is the most common neurological disorder in adolescents
• We know that YP with epilepsy have higher levels of depression, and anxiety compared to adolescents without epilepsy.
• Transition presents lots of challenges:
• Attending a new hospital and ‘entering the unknown’
• Building trust and developing new relationships with staff,
• Understanding the condition, taking responsibility for its management, which raises a number of Questions??????
Young People with epilepsy
• The young person with epilepsy can either have had diagnosis in childhood or have first seizure in adolescence
• Are these two groups the same?
• Do they share the same challenges and problems
• What is the transition experience of a young person with first seizure in adolescence
• The nature of epilepsies starting in childhood are different to those with adolescent onset
Epilepsy
Knowledge ofepilepsy
PeerAcceptance
Anxiety,depression
Low self-esteem
Developmentof
autonomy
AcademicAchievements
Identityissues /stigma
Medicationcompliance
FutureCareers
ContraceptionTeen
pregnancy
The Challenges of Transition
Challenges for Transition
Young women with epilepsy• Concerns for those taking
Valproate
• Valproate patient information booklet / MHRA Checklist requires review
• Valproate/Epilim packaging changes with warning for use in pregnancy
Accessing services• Knowledge of services
• Potential loss to follow-up
• Miss-information
• Mixed messages
TROPHY Study
• Aim: to explore the experience of transition for young people with epilepsy to produce accessible resources, to increase knowledge and engagement in adult epilepsy services.
• Additional Patient and Public Involvement (PPI) to develop transition pathway and patient literature.
Trophy Study
• Grant award
• Burdett Trust Fund for Nursing
• Transitional Empowerment Programme
• Ethical approval
• North West – Preston Research Ethics Committee
Methods
• We recruited young people with epilepsy aged 16-21 years from the point of referral to the Walton Centre and our Satellite clinics
• This included both young people with diagnosis of epilepsy prior to transition, and first seizure at age of transition
• We conducted a mix-method longitudinal research design involving focus groups and interviews (YP followed-up over 18months)
Main findings
• Value of group work
• Workshops
• Information requirements
• Easy access
• Animation
• Leaflets
• Information needs
• Consistent, clear
Value of group work
• Participation in the study was valued as opportunity to meet other young people
• Feeling less alone
• Sharing experience felt learning opportunity
• Opportunity to talk about epilepsy – not worrying family
Wanted information/ Workshops
• Confusion about?
• Contraception
• Mental health issues
• Anxiety and stress potential trigger
• Memory and link to epilepsy
• Knowing about own condition, opportunity to self manage e.g. different ways of dealing with stress”
• I’d go to a pregnancy workshop definitely”
Information requirements
• Wanted leaflet
• First visit & what to expect
• Light read
• Visual information
• Animation – easy to understand
• Something to watch and download
• Available on social media
Preparing for your appointment
Information needs
• Young women
• Frustration of mixed
messages of risk information
• Misinformation of action to
take if finding self pregnant
• Knowledge of seizure risk
• SUDEP
• Trusting information source
• Persons with epilepsy versus professional sites
Study Outputs / conclusions
• Transition leaflet –introduction to your first visit
• Animation
• The Walton Centre Website - transition page
• Workshops/transition groups
Transitional Care for Young People with Long-term Conditions
A Collaboration for Leadership in Applied Health Research and Care
North West Coast (CLAHRC NWC) study
Vicky Gray, Lauren Burke, Neil Wilson
People
Evidence Synthesis Collaboration
• Professor Matthew Peak, Professor Michael Beresford, Dr Victoria Gray, and Kayleigh Whelby at Alder Hey Children’s NHS Foundation Trust.
• Dr Janine Arnott, and Dr Neil Wilson at University of Central Lancashire.
• Dr Jamie Kirkham, Dr Pete Dixon and Lauren Burke at University of Liverpool.
Project Overview• Three work streams will develop and integrate:
➢ 1) Literature review to identify outcomes reported in clinical literature;
development of outcomes: Lauren Burke, Dr Jamie Kirkham;
➢ 2) A review and development of interventions and current transitional
care pathways: Kayleigh Whelby, Dr Victoria Gray;
➢ 3) Qualitative interviews with stakeholders to inform outcome and
intervention development: Dr Neil Wilson, Dr Janine Arnott.
Working Model
OutputsDefinition of ConceptKey Themes Application
CoordinationOrganised approach to
working together
CommunicationClear, effective, open and
honest
CapacityAre all services
prepared?
ComplexityIndividualised for
complex cases
Continuity of CareSmooth with minimal
disruption
ConfidenceThe readiness to transfer
CapabilityAwareness of condition
7C
s –
Key
Lite
ratu
re o
f ‘G
oo
d T
ran
siti
on
’ Validation Exercise
Good Practice
Definition of Concept
Qualitative
Interviews with key stakeholders to identify
good practice.
QuantitativeConsensus meetings with
stakeholders.Map outcomes that have been used/are being used to assess
outcomes framework.
Intervention development
Identify interventions that have been used/being used
to intervene.
Core Outcomes Set & Core
Framework of Transitional Processes
Intervention Package
Work Package 1Phase 1
• Scoping review of transition literature in the fields of Epilepsy and JIA
• Validation and mapping exercise
Work Package 1Phase 2. Consensus Meeting & Prioritisation Tasks
Managing Complex Needs
Consensus Days:
1. Patients transitioning/transitioned & their
parents/carers
2. Health care professionals involved in transitional care
Focus group discussions (using 6Cs as a framework)
1. Processes of transition
2. Outcomes of transition
3. Any additional processes/outcomes?
Prioritisation task
1. Which of these processes are important to your transitional
care
2. Which of these outcomes are important to measure
during/after transition?
Modified 6Cs Framework
&
Core Outcome Set of Measures
=
Intervention Development
Work Package 2: Qualitative Study
Aim: to complement findings of WP1 and to explore and develop 6 C’s framework using
stakeholder interviews.
Sample (n=16): JIA and epilepsy patients (pre, current, post-transfer),
parents, HCPs in paediatric and adult health care settings. Across 4 recruitment sites in NW England.
Interviews: identify domains considered important to health, service, daily life and
good transition. Informed by 6 C’s whilst allowing for additional
themes to emerge.
Current: Staff and parent interviews finished. Analysis
ongoing throughout data collection. Topic
guide adapted to incorporate emerging
themes.
Next steps: Themes mapped using
framework of 6 C’s, framework developed
to incorporate qualitative work.
Integrate with review to inform consensus and
intervention work.
Work Package 3: Intervention development
Identify existing transition
interventions currently being used in transitional care
Identify existing outcomes currently
being used to measure transitional care
Identify the different types of measures that exist that map onto the outcomes
Intervention development
Map to the 6Cs
• Resources• MDTs• Named Key Worker
Delivering Personalised Health and Care
• Joint transition clinic• Coordination
between services• Joint transition plan
• Readiness to transfer• Independence• Self-management
• Accessible information• Communication
between HCP and patient
• Communication between HCPs
• Utilisation of external groups
• Follow-up plans
• Holistic• Supportive groups• milestones
Findings• Work Package 1
Managing Complex Needs
Scoping review:28 studies included in scoping review:Non-validated transition interventions/programmes in placePaucity of evidence of how to measure transitionDo we look at measuring processes or clinical outcomes?
Consensus meetings1 participating site currently (Royal Preston, n=5)Challenges along the way…
Findings• Work Package 2
Evidence Synthesis Collaboration
“Yes, it was quite overwhelming from when you move over but before then I
wouldn’t say they gave us any in-depth information…”
“The most important thing is the communication with
paediatric services because I think even if you don’t go and
meet the patients like we do or clinics, if you have that
communication, that trust of the teams and the capacity of
going up and down with questions and discussions, that makes a whole difference. This
for me is the top one”
“I think it will be much harder because my mum and my family know what they are doing. So
transferring I think it will be a bit different for me because I’ll have
to organise, well not organise myself but I’ll have to make my own way to hospital and book
appointments and stuff like that.”
“But I think that’s essential, you need to know where they
are going it’s just that sometimes I know where they
are going is not great and that’s something I find is very difficult because you do your best to get everything right
for them”
“My most important thing would be that I met the team,
I met the team before anything is put in place. I met
the team that was going to deal with me and they met
me”
Young person
Young person
Young personHealth professional
Health professional
Transition for Young People with
Learning Disabilities and
AutismKaren Whittle : Chief Nurse for Safeguarding Serena Jones : Learning Disability Lead Nurse
• Understanding what a Learning
Disability is
• Share what we are doing in the Royal
and Broadgreen University Hospital
Aim
• MENCAP (2002) define a learning disability as ‘a life-long condition
acquired before, during or soon after birth that affects an
individuals ability to learn’.
• In the UK around 2% of the population having a learning disability.
• Indicator of learning disability: (Average IQ in UK – 100)• Mild IQ 50-70
• Moderate IQ 35-50
• Severe IQ 20-25
• Profound IQ <20.
What is a Learning Disability
People with learning disabilities have poorer health and more health related
problems than the general population.
Men with learning disabilities die, on average,
14 years earlier than men in the general population.
Women with learning disabilities die 18 years
earlier compared to the general population.
(Primary Care Domain, NHS Digital, 2016)
4 times as many people with learning disabilities die
of preventable causes as people in the general
population.
People with Learning Disabilities will need primary and secondary health care
throughout their life.
Health Inequalities
Common Health ProblemsDementia
More likely to develop early onset Dementia, especially people with
Down’s syndrome.
Mental HealthAnxiety, Depression, Schizophrenia more common in LD than general population.
Epilepsy1 in 3 in LD
1 in 100 General Population
Coronary heart disease
2nd highest cause of death
CancerGastrointestinal cancers
twice as prevalent.Lung, cervical, prostate,
breast much lower
Dental problemsMore likely to have tooth
decay, loose teeth, untreated oral disease and
gum disease.
Gastrointestinal problems
70% LD suffer with gastro problems.
Sensory impairments40% have a vision
problemSimilar numbers hearing
Swallowing and Eating
Swallowing far more common in Profound LD
ObesityMore common in
mild LD than general population
Respiratory Disease
Most common cause of death for people
with LD.
DiabetesHigher rate of diabetes (link to obesity, poorer
diet)
• Prevalence of Psychiatric disorder or
major behavioural disturbance in young
people with LD is high (prevalence approx.
50.7%)
• Specific diagnosis such as Autism
correlate with higher incidents of
challenging behaviour
• Low self-esteem, depression and anxiety
are often linked
Mental Health & Challenging Behaviour
• Diagnostic overshadowing - once a
diagnosis is made of a major condition
there is a tendency to attribute all other
problems to that diagnosis, thereby
leaving other co-existing conditions
undiagnosed.
Diagnostic overshadowing
What we are doing in the Royal and Broadgreen Hospital
regarding Transition for people with a Learning Disabilities
• Shaun Lever
• (Learning Disability Service Manager)
• Serena Jones
• (Learning Disability Lead Nurse)
• Ged Jennings
• (Learning Disability Nurse)
The Learning Disability Team
Key components of our role
Inpatients Outpatients
Discharges Training
Training
Partnership with other hospitals
Legally required to make
‘reasonable adjustments’
ensuring equal and fair treatment.
Reasonable adjustments include
removing physical barriers to accessing or
delivery of services, to meet the needs of
people with learning disabilities.
Equality Act 2010
Pre Admission Pack
One Page Profiles
Our Clinical Tools
“A – VIP”
Four basic principles of Learning
Disabilities support in RLBUHT.
Activities and support from volunteers
Vulnerable Patient on Whiteboard
System
ICE Referral
Passport in place
Whiteboard ‘Vulnerable Patient
LD Patient “ICE” Referrals
GP Discharge Letter
External Partnership Working
GP Surgeries
Service Providers
Families/ Carers
Health Facilitators
Community LD Nurses
Other NHS organisations
CCG’sVolunteers
Liverpool Network Group
Advocacy Groups
IMCA Service
Local Authorities
Transition (AH)
Patient
Team Forward PlanTraining
(including Advanced Level)Information Packs Identify Carer Experience
(questionnaire)
Develop Vulnerable Patient (whiteboard) and ICE
Referral link.
Diversion, distraction, sensory and reminiscence
therapies.
New hospital challenges and layout
New audit Quality Account targets Transition from children service to adult.
External referral forms Palliative Care Support (LeDeR project)
• Nic (19 years)
• Introduction – solicitors letter
• Developed a detailed care plan
• Reasonable adjustments made
• Thank you from Mum
Case Study
10 Steps Transition Pathway Development and implementation at Alder Hey Children’s Hospital ‘The Alder Hey Way’
Lynda Brook & Jacqui Rogers
29th June 2017
10 Steps – Transition to adult services
• Development of the 10 Steps Transition Pathway
• Key findings through development and implementation
• The process of operationalising in 4 specialities
• Discussion and next steps
Improving Transition at Alder Hey 2014/15• Transition CQUIN • For complex long term conditions, technology dependency, severe
learning disability and palliative care (2014-15) • CAMHs (2015-16 and 2016-17) • 4 identified long term conditions (2016-17) • Trust Transition Team
– Nurse Lead for Transition – Clinical Lead for Transition– Executive Lead for Transition
• Trust Transition Policy • Based on the 10 Steps Transition Pathway • Supporting training programme • Link to an overarching Transition Framework Agreement
across Merseyside and Cheshire.
Developing the 10 Steps PathwayTo develop a simple generic transition pathway• Based on best practice evidence • Person-centred – treating all patients with dignity and
respect • Ensuring co-ordination and continuity across transition • Access to urgent care – ensuring access to safe
care/treatment• Role of the GP and primary care team • Flexible to adapt for highly complex patients • Simple and clear enough to be equally applicable for
more simple transitions
Developing the 10 Steps PathwayInitial development • Literature review • Interviews with adult specialists and GPs • Experiences of working with young people and
their families over 10 years • Extensive engagement and consultation with
professionals from children’s and adult services, young people and their parents over 10 years
➢Aintree 2009 ➢Transition in palliative care (2010 – 11)
Developing the 10 Steps PathwayConsultation and further development • Briefing document for professionals, outlining plans for
transition, and identifying work streams • Initial awareness raising meetings across Clinical
Business Units within Alder Hey • Series of one-hour ‘Transition Roadshows’ with key
clinical teams across the Trust • Online transition survey • Tackling Tricky Transitions away-day • Extensive collaborative working regionally• Merged CAMHs with Trust Transition policy
10 Steps© Pathway
Generic transition pathway
• Basis of Trust (and Network) Transition Policy
• Supporting materials
• Auditable standards
• Best practice guidance
10 Steps© Toolkit• What good looks like: Young person friendly guide for what
to expect • Empowering the young person and supporting parents • Role of Lead Consultant, Keyworker and GP • Transition Map: Specialty by specialty transition pathways • Special Transition Register: Actively supporting and
monitoring young people who remain under children’s services beyond normal transition age.
• Transition Policy for children’s and adult services, with auditable standards
• Competencies for multidisciplinary transition training at universal, core and specialist levels
Special circumstances• No appropriate target service due to a relative or
absolute lack of skills and experience with this type of patient in the adult sector
• Transition is delayed or paused due to patient instability
• Long term conditions diagnosed or recognised during the transition age range
• Life threatening illness or palliative care • Conditions requiring ongoing treatment at in children’s
services beyond the age when transition is normally completed
Special Transition Register • Registration system for early identification of
special circumstances, complex or difficult transitions
• Compulsory if patients are to access children’s services after their 18th birthday
• Resource for commissioning and cohort planning • Permissions to stay on the Special Transition
Register and continue to access children’s services reviewed every 6 months after the young person’s 18th birthday
Issues and concerns identified from 3 Trust wide engagement events
What is working?
– Non complex transitions
What is not working?
– Lack of planning and organisational time
– Lack of reciprocal service
What needs to change?
– Fully developed services
– Planning and co-ordination
• Need for flexible transition age: 16 – 25 years
Biggest barriers
– Lack of reciprocal service
– Family and professional fears
– Resources
– Communication, timing planning
Young people of transition age accessing the Trust
• 177 inpatients aged 18 or over cared for by the Trust in the last 2 years (2014 – 2015)
➢ 30 inpatients with no evidence of transition (+ 8 unknown)
• Continued to access the Trust due to ➢ No appropriate target service in the adult sector ➢ Specialised services only available at Alder Hey ➢ Lack of a clearly defined transition pathway ➢ Failure to “look ahead”: appointments for 1 or 2 years’
time
Transition in complex neurodisability New CQUIN 2017-2019
Young people with➢Complex long term conditions ➢Profound and multiple learning disabilities ➢Technology dependence ➢Palliative care needs
• No unifying diagnosis: difficult to identify • Specific additional challenges for transition to
adult services
Identifying young people with complex neurodisability • Lists of young people aged 14 or over from community
physiotherapy, special school, specialist and palliative care clinics merged and duplicates removed
• Patients were identified using the criteria:
➢ Severe or profound and multiple learning disability
➢ 3 or more specialist services
➢ Technology dependent
➢ Life threatening or life limiting condition
➢ Gross motor function measure 4 or 5
➢ Oxygen dependent
• 56 young people identified
• Inconsistent recording in clinic letters regarding
➢ Learning disability
➢ Physical disability
➢ Technology dependence
➢ Oxygen dependency
• Transition discussions occurred late: the majority over 18 years of age
• Professional reluctant to transition to adult services because of a lack of appropriate services in the adult sector
• 20 (36%) were young people aged 18 years or older who were “stuck” or “delayed” in children’s services due to a lack of suitable target services in the adult sector. Approximately half of this group were oxygen dependent.
Identifying young people with complex neurodisability
Commissioning transition in complex neurodisability • Lack of clarity regarding the interface between local and
national commissioning responsibilities • Specialist commissioning is responsible for the majority of
care for these patients in the paediatric sector • CCGs are likely to be responsible for the majority of care for
these patients in the adult sector • National tariff arrangements to support the relevant pathways
in children’s services are unfit for purpose resulting in a financial deficit
• The deficit cannot be underwritten by either CCG or Specialist commissioning to allow transfer of patient care to the adult sector
• NEW CQUIN 2017-2019
10 Steps Pathway implementation • Development of a Trust wide Transition Policy • Identification of Transition Leads for all key specialties
including Safeguarding • Transition Steering Group • 10 Steps Transition website • Online and face to face training and education for
professionals and young people • Active ongoing monitoring of transition status for young
people of transition age • Engagement with commissioners and adult services to
develop appropriate pathways including for young people with complex neurodisability
Implementing the Trust Transition Policy • Phased implementation (supported by a CQUIN) • Four identified speciality services in first phase ➢ Orthopaedics: Hip & lower limb ➢ Rheumatology ➢ Cystic Fibrosis ➢ Diabetes
• Development of specialty specific transition protocols linked to overarching transition policy and national specialty-specific guidance where available
• Baseline audit against standards • Develop and implement an action plan based on development needs
identified within each specialty service • Aim to use initial specialty services as resource to aid scale up and spread
CQUIN 2016-2017- The process
• Identified 4 Specialities caring for patients with LTC’s• Identified numbers of patients over 14 years• Worked with Clinical teams to identify: ➢ How Transition will fit best in their speciality ➢ Which Transition preparation tool will best fit➢ How they will store patient Transition plans➢ Who is appropriate/capacity to deliver keyworker/care
coordinator role➢ If >3 specialities who is the Lead Consultant➢ Working in partnership with adult receiving services➢ Deliver Transition Training
CQUIN 2016-2017 Cont….➢ Familiarise with 10 Steps Transition Toolkit➢ Benchmark audit current practice➢ Change templates if service requires➢ Confirm a start date➢ Implement Transition into clinical reviews➢ Continue to work in partnership with education and
social care where required➢ Follow up DNA rates in adult services➢ Re - Audit following 12 months of implementation➢ Patient Satisfaction just prior to handover to adults
Transition Research in Liverpool
➢ Developing a core outcome set for transition (CLAHRC)
• Generating a set of outcomes to evaluate the effectiveness transition interventions
• Analysis of interventions for transition in research and implementation (CLAHRC)
➢ Generating consensus (from patients and health care professionals) on interventions to support transition
• Evaluation of the 10 Steps transitional pathway of care programme (PhD with Edge Hill University, Alder Hey Children’s Nursing Research Unit)
Next Steps• Continue to implement Transition across the Trust-
Speciality by speciality• Continue to audit Transition in all specialities to ensure
we comply with Transition Standards & contribute to patients good health and life outcomes
• Consider the best way to deliver the 2017-2019 Specialist Commissioners CQUIN for the patients with complex neuro-disabilities
• Continue to work closely with adult services • Communicate with commissioners any gaps in
service provision
Conclusion• The 10 Steps Transition Pathway provides a
robust Pathway to support transition to adult services for all young people including those with the most complex needs
• Implementation of the 10 Steps Pathway has the potential to ensure safe, effective caring and responsive person- centered transition for all young people with long term conditions
• Further evaluation in parallel with ongoing implementation is planned
Any questions?
• www.10stepstransition.org.uk
CAMHS TO ADULT MENTAL HEALTH AND
LEARNING DISABILITIES TRANSITIONS
WELCOME Phil Laing Transitions Practitioner
Alder Hey and Mersey Care NHS Trusts
OUTLINE OF THE SESSION
Focus on mental health and learning disabilities
transition and best practice
Alder Hey and Mersey Care Transition CQUIN
Young peoples’ views
Work to date and planned work to achieve targets
WHY THE FOCUS ON YOUNG PEOPLE’S MENTAL
HEALTH?
Most mental health problems (70%) emerge in adolescence, and represent the main health problem for this age group (Kessler et al, 2007)
The age at 16-18 can be critical period particularly when considering how local services are set up and commissioned
We need to be mindful of the major physiological, emotional and social changes happening in the young person’s life
Nationally transitions from CAMHS to AMHS are hampered by service organisation and delivery divides which do not support need. Transitions have been found to be poorly planned, poorly executed and poorly experienced. (Singh, 2008; Singh et al, 2010 )
Under 25s are under represented in local adult mental health services, meaning services are failing to engage, when problems may be most effectively treated.
EXAMPLES OF THE TYPES OF TRANSITION INCLUDE
Straightforward Transition i.e. young person has a clearly defined mental health
problem/Serious Learning Disability (SLD) which requires on-going support from
Adult Services
Complex Transition- often have: unclear diagnosis, co-occurring difficulties e.g.
Autistic Spectrum Disorder (ASD),usually present with high risks, involve multiple
agencies, may involve commissioners
Disrupted/Disjointed Transition- the process does not take a linear pathway and
will need careful coordination of agencies involved both past and present
TRANSITIONS – SERVICE MODELS
Developmental approach
Formulation driven
Psychological interventions
Family orientated
Relationship with risk
Flexibility to engage
Diagnostic approach
Pharmacological interventions
Adult approach
Risk management
Clinic based services
Crisis and outreach
Relationship with developmental
difficulties
CAMHS AMHS
WHAT IT FEELS LIKE AT THE POINT OF
TRANSITION FOR THE YOUNG PERSON?
HOW IT FEELS IF IT’S NOT DONE EFFECTIVELY?
WHAT YOUNG PEOPLE TOLD US
• We want to be listened to and understood
• We want to be taken seriously
• Transition and discharge arrangements should happen smoothly , it shouldn’t be left to us or our families to manage it alone
• Transitions should focus on developmental age rather than chronological age and on our individual needs
• Choice , information and advice to help us make informed choices about our care and to help us move on
• Honesty about what can and cant be kept confidential
• Continuity of care – it take time to build relationships
• We shouldn’t have to fight for our rights
YOUNG PEOPLE’S VIEWS CONT’D
We don’t like repeating our stories time and time again
Don’t talk in riddles, ditch the jargon
Provide us with all of the information we need
Dispel any myths or misunderstandings
We want to have face to face meetings with CAMHS and AMHS
practitioners
Make sure we are fully involved
Prepare and plan early
Put yourself in our shoes
LOCAL THOUGHTS FROM YOUNG PEOPLE VIDEO
CAMHELIONS :
Three Transitions Tales
https://vimeo.com/138248901
RESEARCH FINDINGS
Research examining transition from CAMHS
to AMHS indicates plenty of room for
improvement
SUMMARY OF THE RESEARCH
In general transition is “poorly planned, poorly
executed and poorly experienced”Singh et al, (2008), Singh et al, (2010), McLaren et al, (2010)
ALDER HEY/MERSEY CARE JOINT CQUIN
This CQUIN is constructed so as to encourage greater collaboration
between providers spanning the care pathway. There are three
components of this CQUIN:
a casenote audit in order to assess the extent of Joint-Agency Transition
Planning; and
a survey of young people’s transition experiences ahead of the point of
transition (Pre-Transition / Discharge Readiness); and
a survey of young people’s transition experiences after the point of
transition (Post-Transition Experience).
In a nutshell- better planned, better executed and better experienced.
enabling smooth transition from CAMHS to
AMHS
Information continuity
Team Continuity
Relational Continuity
Care Continuity
FOUR BEST PRACTICE PRINCIPLES:
INFORMATION CONTINUITY
SHARING INFORMATION
All appropriate information is shared between services before, during and after the transition.
The young person is an active participant in the sharing of information
CAMHS send a comprehensive referral letter, summary of care and all relevant documentation regarding future care to AMHS
Confidentiality and consent protocols are followed.
*Good Practice- use referral template and transition checklists (professional’s checklist and young person’s - ‘My Checklist’), AMHS send and receive consent to share information document signed by young person, ‘My MH Passport’
TEAM CONTINUITY
SHARED TRANSITION PLANNING
There is at least one meeting involving the young person and /or their
support person(s) and a key professional from both CAMHS and AMHS
prior to the transfer of care.
Transition meetings happen during the transition phase
During transition CAMHS and AMHS will connect on a regular basis
RELATIONAL CONTINUITY
PERIOD OF OVERLAPPING CARE AND JOINT WORKING
CAMHS and AMHS work collaboratively during the transition
CAMHS and AMHS provide collaborative case management until the young person has fully transitioned to AMHS (CAMHS remain clinically responsible until the point of transfer)
Documentation of the transition process is shared
Services communicate using plain language which is jargon free and inclusive
CARE CONTINUITY
KEEPING THE YOUNG PERSON ENGAGED WITH AMHS
The young person is engaged with AMHS following the transition
The young person is aware of the key people from AMHS involved in their care
AMHS confirm that they have all appropriate documentation
CAMHS close the case at the point of transfer in the knowledge that the young person is engaged with AMHS
TRANSFER OF CARE MEETINGS
Bi-Monthly
Sefton and Liverpool
Senior representation from CAMHS, AMHS, Social
Care, LD
Complex case discussion for ‘stuck’ cases
Mediation when required
WHAT HAVE WE DONE
Consultation with young people across all services to devise ‘My
Transitions Checklist’
Consultation with staff to devise a professional’s Transition
Checklist
Provision of training to both CAMHS and AMHS staff
Aligned CAMHS and AMHS policies and overarching Alder Hey
Policy
Alder Hey and Mersey Care have signed up to the National
CQUIN
Transfer of Care Meetings
WHAT WE PLAN TO DO
Continued development of a Transition
Pack
Development of young people’s
satisfaction questionnaires
Bespoke training and support
The transition needs of young people with
ADHD and Autism
Central Manchester University Hospitals NHS
Foundation Trust
Transition lead - Strategic Clinical Network - Greater
Manchester, Lancashire and South Cumbria
1
What kind of service do you work in?
• 0-18
• 18 – older age
• Older age
• Lifespan
• Condition specific
• Other
2
What kind of transitions do your
patients experience?• Changes in staff
• Changes in service focus/culture
• Changes in the patient’s health making them no
longer eligible for the service
• Geographic changes
• Age cut-off
3
How many services in your
area work with 16 – 19 year
olds with developmental
disorders?
Services working with 16 – 19 year
olds in Manchester• CAMHS Trust 0 – 18 (during work hours)
• Adult trust (18+ during work hours/16+ out of hours)
• Voluntary sector mental health services 14 – 25
• Schools/colleges/apprenticeships/PRUs all with
different age cut offs
• Social services 0 - 18
• Substance misuse service 0 - 19
• Youth Offending Service5
What do we know about people with
developmental disorders• Young people with developmental disorders struggle
to understand and accept change
• Young people with developmental disorders respond
best to clear logical rules
• Young people with developmental disorders respond
best if the same message is reinforced by different
workers
• Young people with developmental disorders have
high levels of physical and mental comorbidity6
What do we know about people with
developmental disorders• Young people with developmental disorders are over-
represented in the criminal justice system (Nobody
made the Connection)
• Developmental disorders are highly heritable (NICE)
• Patients attending 4 routine general adult outpatient
clinics in the North East of England were screened
using tools including the ASRS-V1 and 22% were
diagnosed with ADHD (Rao, P et al 2011, Progress in
Neurology and Psychiatry)
7
My service : Emerge 16 – 17 CMHT
• Community based service for 16 – 17 year olds
• Roughly half referrals of young people with undiagnosed
developmental disorders come through crisis routes
• There are high levels of missed appointments, and re-
engagements during times of engagement
• Older adolescents with developmental disorders present very
differently to younger children
• Gender ratio is roughly equal
• Often patients need treatment for anxiety and depression
alongside assessment and treatment of developmental
disorders8
What are the challenges for transition
• Conveying that chronic conditions are lifelong
• Addressing transition after a difficult engagement process
• Consistently addressing transition regardless of attendance
• Ensuring that pathways in and out of traditional CAMHS
incorporate voluntary sector services
• Moving from a culture of engagement, multi-axial formulation
and one-stop-shop facilities to a very high volume recovery
model service that requires autonomy
• Ensuring that transition is multi-agency and effectively
incorporates the voluntary sector
• Supporting transition even if people arrive 2 weeks before 18 9
iThrive
• This model aims to provide clarity between children and families
that need treatment and support, and those that need self-
management and intervention
• Wolpert et al (2015) divide CAMHS patients into 4 groups
– Getting advice and signposting (increased role of voluntary
sector)
– Getting help
– Getting risk support
– Getting more help
Do people feel that this prepares young people for adult
services? 10
Transition Case Study 1
• Young man referred from the Youth Offending Service. Community order for burglary and concerns raised re low mood.
• ADHD confirmed but is reluctant to commence medication as he doesn’t think this will make any difference to his functioning.
• Complex family background, recent bereavement, substance misuse, living in homeless accommodation, parent in prison.
• Had achieved good grades at GCSE.
• Engaged really well, especially with older male staff member and keen to attend appointments.
• Mental state deteriorated while in homeless hostel with increased poly drug use compromising engagement and mental state.
11
Transition Case Study
• Approaching 18th birthday numerous referrals made to
different adult services, but reluctant to engage and
becoming increasingly anxious and isolated.
• Not motivated to attend appointments independently.
• What would you do?
12
Transition Case Study 2
• Young woman referred to service via A&E following presentation physical injury while intoxicated. Staff concerned about low mood.
• Diagnosed with ADHD. Offered medication but struggling to take tablets regularly as felt they compromised her lifestyle.
• Living between parents and other relatives’ homes, poly drug use, lots of relationship /friendship breakdowns, one termination followed by a miscarriage.
• Referred to adult mental health services but did not attend initial appointment as unable to organise transport to clinic on the day.
• Decided not to pursue further referrals as felt she would take ‘time out’ of mental health services and focus on her education.
13
Barriers to Transition
Young Person
Time restrictions
in engagemen
t
Finding the ‘right’
service
Transient population
Adjusting to
diagnosis
Established coping skills
Lack of ongoing
adult support
Mistrust of new
services
14
Where next?
• Look at the lessons learned e.g. from Norfolk 14 – 25,
Birmingham 0 – 25
• Use of transition workers, and protocols
• Thoughtful multi-agency transitions that consider all healthcare
and wider needs, with pathways through voluntary sector and
NHS
• Joint training and study days to develop links
• Listening to the feedback from service users and working with
service users to present innovations
• Piloting 0-25 services
15
Historical and current
drivers for change• ‘National Service Framework for Children and Maternity
Services (2004)
• Mind the Gap (2005, 2010)
• CAMHS to Adult Transition, Health and Social Care Advisory Service, Self Assessment Checklist (2006)
• ‘Pushed into the shadows (Childrens Commissioner for England, 2007)
• Transitions of care from child and adolescent mental health services to adult mental health services (TRACK Study) : a study of protocols in Greater London (2010)
• Transitions in Mental Health Care (Young Minds 2010)
• Health and Social Care Act (2012)
16
Historical and current
drivers for change• Joint Commissioning Panel (2012) for Mental Health
Guidance for commissioners of mental health services for young people making the transition from child and adolescent to adult services
• Nobody made the connection (Children’s Commissioner, 2012)
• NHS Benchmarking Network (2013) CAMHS Benchmarking report
• Care Quality Commission From the pond into the sea Children’s transition to adult health services (2014)
17
Historical and current
drivers for change• Closing the Gap: Priorities for essential change in mental health
(2014)
• Mental Health Crisis Care Concordat (HM Government, 2014)
• Ready Steady Go (2014)
• Thrive (2015)
• Future in Mind (2015)
• Model Specification for Transitions from Child and Adolescent Mental Health Services (2015)
• Transition from children’s to adults services for young people using health or social care services (2016)
18
Model Specification for Transitions
from Child and Adolescent Mental Health
England• http://www.england.nhs.uk/wp-content/uploads/2015/01/mod-
transt-camhs-spec.pdf
• Notes that prevalence of mental health problems in children and young people is increasing.
• Emphasises that mental health should not be allowed to deteriorate during the period of transition.
• Provides guidance for transition process.
• Notes that there are different potential service models for transition services.
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Resources
• Mental health crisis care concordat
https://www.gov.uk/government/uploads/system/uploads/attachment_
data/file/281242/36353_Mental_Health_Crisis_accessible.pdf
• Thrive (2014) http://www.annafreud.org/media/2552/thrive-
booklet_march-15.pdf
• NICE Guidance Transition from children’s to adults services for
young people using health or social care services (2016)
https://www.nice.org.uk/guidance/ng43
• Future in Mind
https://www.gov.uk/government/uploads/system/uploads/attachment_
data/file/281242/36353_Mental_Health_Crisis_accessible.pdf
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