Guest Speakers: Sue North and Maureen Banda, Children and Young People's Team, NHS England The Children and Young People’s team at NHS England share the updated Care, Education and Treatment Review Policy, highlighting what is new. They also talk about the team’s focus and priorities for 2017/18 and the supplementary guidance for commissioners from the new service model. A parent carer who was involved in its development also joins the panel.

1. www.england.nhs.uk
Children and Young People with
Learning Disabilities NHS England
priorities for 2017/18
Sue North, Social Care & Education
Adviser, Transforming Care
Maureen Banda, Regional Strategic Case
Manager (London), Children and Young
People
Ian Penfold, Parent and Expert by
Experience
25 May 2017
Learning Disabilities:
Share and Learn Webinar
#improvingLD @NHSEnglandSI

2. www.england.nhs.uk
Care, Education
and Treatment
Reviews for
children and
young people

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Building the right support
Children, young people and families are supported to
have a good quality of life. They are treated with
respect and have an expectation of a home in their local
community
Children and young people should be kept safe but at
the same time supported to take positive risks
Children and young people should have choice and
control over their lives
Children and young people’s support should be
provided in the least restrictive way
Children and young people should get equal health
outcomes to the rest of the population
Equal!

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Dame Christine Lenehan. January 2017
“These are our children and they are
known. They occur in every area and
they often follow a well-trodden
pathway out of their local authority
area, never to come back”

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The
process seems to have been
evolved from an adult model
and not started with the needs
of children and young people
and developed around their
needs
Care and Treatment Review
Policy refresh

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Contributors for children and
young people CTR policy refresh
Engage-
ment
Paper
Response
Parent
carer focus
group
On line
and social
media
discussion
(BUT)
Children &
Young
People
CTR Audit
CTR focus
group
feedback
Feedback
from
Strategic
Case
Managers
Feedback
from Dep’t
for
Education
and ADCS

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Children and young people CTR
audit - key themes
• 23 CTRs were audited – community, inpatient and review
• CTRs poorly recorded so much of the information was not easily
discernible
• Difficult to clarify information with appropriate commissioner
• Poor quality recording of debate and decisions
• In some cases, lack of engagement from social care &
education
• Unclear about level of engagement of children and young
people

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Children and young people’s
CTR audit
52%
48% Yes
No
Did social care
attend?
38%
62%
Yes
No
Did the local authority
education representative
attend?

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CTR Policy refresh – what you
asked for more information in the
policy on
Education
Info
Education
Health and Care
Plans
Maintaining
contact Looked after
children Rights
Consent
Legal
Frameworks
Transition
Engaging with
parent carers Safeguarding

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Refreshed Care and Treatment Review Policy 2017
Code and toolkit for children and young people

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 A situation that requires a Care, Education and Treatment review
may be because of a change in a child or young person’s
education or care provision, or it is likely to lead to some significant
changes in their education or care provision
 Recognising the significance that education has in the life of every
child and young person & the impact it exerts upon their future life
chances
 Ensuring a clear alignment with EHCPs & SEND objectives
 Difficulty in creating a clear plan without education and children’s
social care involved
From CTRs to Care Education & Treatment
Review (CETRs) for Children & Young People

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Who should be invited to a CETR?
• Family carers/those with Parental Responsibility.
• The child/young person &/or their advocate
• Possibly siblings
• Children’s Social Care
• Adult Social Care / Transition team (if appropriate)
• Local Authority Education department
• Education Provider (school, college, etc.)
• CYPMHS /CAMHS
• Responsible Clinician, Senior Nurse and members the inpatient team
(in-patient)
• Key Health providers
• Possibly voluntary & community organisations providing community
based support to the CYP

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Getting the right people there
Education – local authority and education providers
Children’s Social Care and / or transition team and/or
youth offending team
Very difficult to have a good
quality CETR unless the right
people are there
For children and young people
this usually means the right
people from the local authority

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• Delegation of attendance is
acceptable but the delegated
individual must have clear
knowledge of the child and is
empowered to make decisions
about assessment, service
provision and funding.
• Multi-media - last resort.
Getting the right people there

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• The responsible commissioner will organise and chair the review
• This will be either:
• The commissioner for the child while in hospital;
• Or, the CCG commissioner if the child is at risk of admission.
Review panel must include:
• Independent expert by experience
• Independent clinical expert.
Chairing the CETR

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• Education Health & Care Plan
(EHCP) or Statement of Educational
Need (SEN) for those that still have
these
• SEN Support plan
• Social Care Assessment & Review
• Looked After Children Reviews
• Care Programme Approach (CPA)
CETRs & Links to other
assessment processes

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• So important for everyone but
particularly children
• Vital to maintain good links and
contact, and very important to
ensure there are clear plans in
place if children or young people
are admitted.
• Often challenges about who pays
for travel – guidance in the policy.
Ensuring quality of contact between children, young
people and their families & communities when children
are admitted

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Consideration of the
need for, and access
to advocacy services
should be an integral
part of any CETR
Advocacy

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• Children under the age of 16 are presumed to lack capacity.
(Same for all children)
• If they can demonstrate sufficient capacity to understand what is
involved in their treatment, they can consent to it; (Gillick
competence)
• Otherwise, someone with parental responsibility can consent for
them
• Young people (aged 16 or 17) are presumed to have sufficient
capacity to decide on their own treatment, unless there is
significant evidence to suggest otherwise
Capacity to consent

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For children and
young people
frequency of
review CTRs will
now increase to
them being held
every 3 months
Frequency of CETRs

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Commissioner is responsible
for
• Minutes and actions plans
• Making sure everyone
gets them
• Overseeing the
implementation of the plan
Reporting, transparency and Accountability

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• Bespoke services may often be needed to prevent hospital admission
or to facilitate successful transition back to home & family, or an
alternative community provision
• These bespoke packages can be, by their very nature, complex to co-
ordinate and resource
• Local authorities and CCGs have considerable freedom in how they
work together to deliver integrated support that improves children and
young people’s outcomes.
• A range of legislation and guidance supports joint commissioning
arrangements between health and social care to support such
packages of support, including Integrated Personal Commissioning
& use of Personal (Health) Budgets.
Joint Commissioning Arrangements

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 CETRs are required to ensure that children, young people and their
parent carers remain at the heart of the review. Hope that this will
usually result in mutual agreement about the most appropriate
course of action to take for the child or young person.
 This however, may not be the outcome where:
• The young person is detained under the Mental Health Act;
• Disagreement exists about the efficacy & robustness of the
CETR process;
• And/or where the agreed actions arising are not implemented
fully &/or appropriately
 The complaint needs to be either directed through the Responsible
Commissioner, or in the case of the M.H.A, through the M.H.A
tribunal process.
Redress

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At risk of admission and dynamic registers

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Children & Young People’s Team
Sue North – Acting lead
David Gill – learning disability adviser
Phil Brayshaw – service model lead
Tracy Holmes – Project Management
Support
Regional Strategic Case Managers
• Sarah Jackson - North
• Siobhan Gorry – North
• Tonita Whittier – Midlands & East
• Kate Sutton – Midlands & East
• Maureen Banda – London
• Cindy Gordillo– South

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Children & Young People’s team
• Suenorth@nhs.net
• Phil.Brayshaw@nhs.net
• davidgill8@nhs.net
• Tracy.holmes3@nhs.net
• Tonita.whittier@nhs.net
• Kate.sutton1@nhs.net
• c.gordillo@nhs.net
• Maureen.banda@nhs.net
• Siobhan.gorry@nhs.net
• Sarah.jackson23@nhs.net
• www.england.nhs.uk/learningdisabilities/care/camhs

27. Transforming
Care for Children
and Young
People
Supplementary
guidance
for TCPs
April 2017

28. www.england.nhs.uk
• Transforming Care is about improving the lives of people with
learning disability, autism, or both
• It includes children and young people as well as adults
• Transforming Care Programme aims to:
1. Improve community support and services,
2. Reduce inappropriate hospital admissions, and,
3. Ensure equality across health outcomes
Background

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• NHS England are publishing additional guidance to make sure
children and young people are fully included in Transforming
Care Plans
• Based on legislation, best practice and what children,
young people and their families tell us
• Supports the implementation of the Service Model and will
be published by NHS England, the Local Government
Association and is supported by the Department for
Education.
• Signposts Pathway tools developed with National
Development Team for Inclusion and the Challenging
Behaviour Foundation
Supplementary Information for Children and
Young People’s Commissioners

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• Named TCP lead for children and young people
• The TCP’s plan for children and young people links with Special Educational
Needs and Disability (SEND) reforms, and Children and Young People’s
Mental Health Transformation plans [Lenehan Recommendation]
• The TCP board includes Partners from Education
• Parent carers with lived experience are represented on the Board
• Views of children and young people are understood and represented by the
TCP Board
• Dynamic / At risk element of registers include children and young people
• Implementation of the refreshed CETR Policy for Children and Young People
• TCPs understand their progress against the Service Model - Benchmarking
Key requirements by June 2017

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• Implementation of the wider actions set out in Building the
Right Support, the Service Model and Supplementary
Guidance
• Local support and services are commissioned to meet the 9
Principles of the National Service Model
• Measurable reduction in out of area placements and length of
stay in specialist hospitals
Key requirements by March 2018

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• Good support to participate in everyday activities
• Training grounded in equality and inclusion
• Training in Person Centred Planning widely available and Person
Centred Approaches
• Short breaks offer for those with behaviour that challenges
• Access to paid employment for those who display significant
behavioural challenges, including those with a mental health
condition.
Principle 1 - I have a good and
meaningful everyday life

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• Every child with learning disabilities, autism or both has a Single,
Person Centred Care and Support Plan.
• Preparing for Adulthood reviews from Year 9
• Governance for EHCPs to make sure they contain:
• Timely contributions from partner organisations
• Outcomes based on aspirations and needs
• A clear plan of provision tailored to the child’s needs [including
Positive Behaviour Support]
Principle 2 - My care and support is person-
centred, planned, proactive and coordinated.

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• Children and young people with a learning disability, autism or
both have a named keyworker [Lenehan Recommendation]
• There are appropriately skilled people available to act as
keyworkers and keyworker training and support is available
across all partner organisations
• Named lead for transition and clear transition plans
Principle 2 - My care and support is person-
centred, planned, proactive and coordinated

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• Children, young people and families lead on the design, delivery and review
of their own support.
• Also actively involved in every aspect of the strategic planning, development,
and commissioning of support and services.
• Local areas make the best use of Integrated Personalised Commissioning [IPC]
and Personal Budgets:
• Children and young people with an EHCP or Continuing Care funding, and
• Children and young people outside of these groups, where there is clear
benefit
• Good information, advice and support and an opportunity to learn from
people who have lived experience.
• Parents have timely access to information on how to access support and
services.
Principle 3 - I have choice and control over how
my health and care needs are met

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• Clear focus on early years support and early intervention
• Clear routes to the earliest possible diagnosis
• Early advice and support is also available from specialist
services
• Routine behavioural screening for children and young
people who are not in receipt of specialist behavioural
intervention or support;
• Early behavioural intervention alongside practical
and emotional support to carers
Principle 4 - My family, paid support and care staff get the
help they need to support me to live in the community

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• Parents able to spot the early signs of behaviour that challenges and
know how to access support;
• Clear pathways for diagnosis of developmental disorders
• Advice following diagnosis
• Awareness raising via peer support networks and parent carer
forums
• Advice to all parents of children with a learning disability
and/ or autism
• Adapted, evidence-based parent training
Principle 4 - My family, paid support and care staff get the
help they need to support me to live in the community

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• Housing needs assessments for families of children or young people
who display behaviour that challenges
• Good, accessible information about housing options.
• EHCPs ensure housing needs are covered and planning for future
housing is included for young people from year 9 onwards.
• Planning and support for young people who choose to live
independently
• Information for housing providers that outlines needs, and likely
future needs, of this group
Principle 5 - I have a choice about where I live
and who I live with

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• Comprehensive oversight of children and young people
living away from the family home:
• Practical and financial support available to family members
to maintain contact with their child whilst living away from
home.
• Children and young people returning from out of area
placements have a timely transition assessment
• Accommodation meets children and young people’s
needs and all placements are reviewed regularly.
• Quality checking of all placements, using Experts by
Experience, especially when placements are outside of the
local area.
Principle 5 - I have a choice about where I live
and who I live with

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• Clear pathways for earliest possible diagnosis of learning
disabilities, autism or both;
• Appropriate training, including Disability Matters, available across
health, education and social care services;
• Training to identify risk factors associated with behaviour that
challenges
• Annual health checks available from the age of 14 years
• Regular health checks for children and young people with learning
disabilities and/ or autism whose behaviours challenge
• Children displaying behaviour that challenges have access to a
comprehensive paediatric assessment
Principle 6 - I get good care from mainstream
health services

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• Hospital passports and a clear plans for medical visits
• School nurses have capacity and skills
• Children and young people have early access to
specialist support, including;
• Early support services and flexible specialist services
• Mental health and learning disability services work together to
provide specialist advice and support to universal services
Principle 6 - I get good care from mainstream
health services

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• Integrated, community based, specialist support
• Specialist providers are responsible for consultation,
training and guidance
• Specialist Challenging Behaviour pathways based on
NICE guidance
• Access to an enhanced/ intensive support function
Principle 7 - I can access specialist health and
social care support in the community

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• There is a local crisis support /rapid response
pathway, or dedicated service for children and young
people experiencing significant difficulties
• Prescribed psychotropic medications (anti-
psychotics and/ or anti-depressants) reviewed
regularly and when possible are reduced and
alternative therapies are offered.
Principle 7 - I can access specialist health and
social care support in the community

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• Same early intervention and prevention as the rest of the
population
• Families offered support that meets their own and their child’s needs
in line with NICE guidance on challenging behaviour, including
evidenced-based parenting programmes
• Youth justice services are able to identify learning disabilities
and autism, and make any necessary reasonable adjustments
• Included on dynamic register and prioritised across specialist
services
Principle 8 - Helping children and young people
stay out of trouble

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• Children and young people in custody with possible special
educational needs, receive an education, health and care
assessment.
• Existing education, health and care plans follow the young person
into custody.
• Commissioners ensure a robust system of governance for EHCPs
for children and young people in secure accommodation to ensure
they:
• Are in place for those children and young people who are eligible
• Outline clear outcomes based on aspirations and needs leading to
appropriate support packages being put in place
• Include assessment and intervention from all relevant agencies
including health and social care
Principle 8 - Helping children and young
people stay out of trouble

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• Children and young people identified in the dynamic register as “at
risk of admission” are offered the highest level of community
support
• Prior to any admission children and young people have a
community/ pre-admission Care, Education and Treatment
Review (CETR)
• There is clear rationale for admission to any specialist provision;
there is always a clear assessment and treatment plan.
• Inpatient assessment and treatment is incorporated into broader
care and support pathways
Principle 9 - Children and Young People
in Hospital

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• Specialised and local commissioners work together to
ensure the shortest stay and earliest possible discharge
from hospital.
• Community teams and enhanced / intensive support services
work with specialist hospital staff to ensure an effective
discharge and community support plan.
• Care Education and Treatment Reviews are carried out in
line with the policy guidance.
Principle 9 - Children and Young People
in Hospital

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• Independent advocacy is available to all children and young
people admitted to specialist hospitals
• An active commitment from providers to reduce restrictive
practices
• Local partners aware of all children and young people with
learning disabilities and/ or autism in specialist placements
including residential schools
• Same level of scrutiny, vigilance and support for children
and young people placed out of area, including residential
schools.
Principle 9 - Children and Young People in
Hospital

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Thank you for listening
Any Questions?

50. www.england.nhs.uk
Finally…
Join our Massive Online Open Course (MOOC)
It’s free, and is packed with useful information to help you
transform services:
http://ow.ly/WRUL30c1XUi
Join the Learning Disabilities Yammer community – it’s a great
place to connect:
https://www.yammer.com/improvementld/#/home
Details of future and past webinars are also on our website:
https://www.england.nhs.uk/learning-disabilities/webinars/

51. www.england.nhs.uk
Learning Disabilities Awareness Week
• 19 to 25 June
• We will be supporting
throughout the week
• Look out for #LDWeek2017