newham ccg...children & young people’s services: reminder of the case for change dec 2014...

Newham CCGChildren and Young People’s Services

Anil Shah,

Newham CCG, GP Clinical Lead

Newham Diabetes Project, Learning Disabilities

Satbinder SangheraNewham CCG, Director of Partnerships & Governance

Transforming Services Together (TST) Programme, Children & Young People’s

Services work stream Executive

Children & Young People’s Services: reminder of the case for change Dec

2014

Newham CCG Diabetes Youth Project Pilot: 2015-2016 – Progress Update Nov’15

VISION

To co-design diabetes services for youth

with young people, based on a modern

and sustainable approach, achieved

through cross-organisational partnership

working.


2014

We are doing this project because it is important to us and our community

PURPOSE AND JUSTIFICATION

• Newham has the youngest borough population in the UK and hosts the highest prevalence

of type 2 diabetes in young people under 25 in the country.

• An UCLPartners sponsored event in December 2014 brought together young people and

their families who outlined concerns with the existing service model and made improvement

recommendations.

• This project is designed to explore those ideas in more detail and drive them forward to

implementation.

YOUTH COMMISSIONER PURPOSES:

• To raise awareness of diabetes

• To reduce stigma, enabling young people with diabetes to live ‘normal’ lives.

• To make a change for youth in the future living with diabetes.

• To gain insight into health care.


2014

We are aiming to…

increase diabetes awareness and Type 2 prevention in alignment with

national agenda to address rising childhood obesity rates

support young people and families to actively engage in activities that

promote healthy lifestyle, through partnership with local council, education

and public health

create a strong framework for research, education and quality improvement

in diabetes care

support seamless transitions to adult care

build and strengthen young leadership in the community

support positive patient experience and equal and appropriate access to

care irrespective of where young people live or which trust manages their

care


2014

To support the health of young people in our community, we are working to..

co-design commissioning guidance with young people that builds on

the practices that are working for the current target population

increase engagement with health services to improve long term

health outcomes for patients with diabetes

provide the targeted level of support (clinical, social, peer) as

needed, determined by the target population

create strong local partnerships among various stakeholders within

the participating boroughs to strengthen user-centred care for young

people


2014

We are working in partnership with several organisations


2014

Since the project began in April 2015 we have reached several milestones

• April 2015 – project working group established

• May 2015 – 4 youth commissioners recruited, Newham residents between

the ages of 17 and 19 living with Type 1/Type 2 diabetes

• June-July 2015 – youth commissioners complete training programme,

including public speaking and clinical commissioner training

• August 2015– community workshops delivered at West Ham football

stadium, gathering feedback on CYP diabetes pathway and testing

aspirations for commissioning recommendations

• September 2015 – commissioning intentions outlined to provider

emphasising better access developing and improving transition services

• October-November 2015 – Plan the redesigning of services


2014

We have talked about living with diabetes – from diagnosis to every day living

Symptoms and signsA&E

Hospital stay

Back Home

Adapting

What’s next?


2014

Key themes that emerged from our community workshops include:

Relationship with health

care team

• Private appointments

• Three way relationship &

communication

Transitions

• Gradual process

• Co-designed

personal planYoung

Person

Parent/ Carer

Nurse / Doctor

Clinic appointments

• Timing (availability)

• Virtual clinicsPeer support and self-care

• Mentor/buddy scheme

• Reducing stigma

We prioritised our aspirations and agreed what we want to implement for 2016

Difficult Easy

Low

Hig

h

Ease of implementation

Impact

- Transitions:

• Gradual process

• Personal plan

- Relationship with healthcare team:

• 3 way relationship

• Private appointments

- Clinic appointments

• Virtual Clinics (video chat)

- Self-care, peer support and stigma

• PHSE Lessons

- Peer support: mentor scheme

- Peer support for parents

- Stigma: Awareness campaign

- Organisational culture: Soft

skills training

- Peer support: buddy scheme

IT platforms:

tablet?

We will be working with healthcare professionals to improve transition services…

Appointments

- Introduction of phased appointments where parents/carers are present for only part of the appointment,

starting from around year 7. This will encourage young person to gradually become more independent

- Private appointments where only the young person and health care team member are present, to be

offered starting from year 9 to 11

It was recommended that these concepts should be introduced to parents/carers by the health care team

and not the young person.

In healthcare, the word 'transition' is used to describe the process of preparing, planning and moving from children's to adult

services. Involvement in the transition process can help young people to feel more confident and happier about the move. In

order to support them through that process the "Ready, Steady, Go" transition programme has been developed. University

Hospital Southampton NHS Foundation Trust, 2012 - See more at:

http://www.nhsiq.nhs.uk/8792.aspx#sthash.YUXGPmuZ.dpuf

Ready Steady Go transition programme

A series of questionnaires, completed in various stages, to inform the development of young person’s

transition plan. Support is also available for parents and carers as their child prepares for transition.

Next steps:

- Implementation (6 month pilot) to be led by Barts Health team, working with DYP task group and across

paediatric and young adult clinic.

*Throughout the transition process there needs to be an open relationship between the young person, parent/carer and healthcare team*

TRANSITIONS:

Children and young people will go through a number of transitions from diagnosis onwards, such as transitions from

elementary to secondary school. Building on feedback from the community workshops, it was agreed that conversations

introducing transition to adult services can begin to take place around year 7, depending on the individual young person.

http://www.nhsiq.nhs.uk/8792.aspx#sthash.YUXGPmuZ.dpuf

…support healthcare teams to get the best engagement from young people…

The culture around the patient-healthcare team relationship was discussed throughout the

workshops and it was felt that these relationships could be improved.

Using feedback from the community workshops and data from recent patient surveys, youth

commissioners will design a series of soft-skills training courses for healthcare professionals.

The first 60 minute training course will be piloted and delivered by the youth commissioners at

the spring 2016 Diabetes Network Meeting. This course will focus on the nature of interactions

between the healthcare team and young person and what good communication looks like.

Stigma, peer support and self-care:

Peer support for parents

Feedback from community workshops demonstrated that parents and carers could benefit

from peer support, in particular, following diagnosis and during periods of transition.

Next Steps

- Explore opportunities to raise awareness of existing online support groups and encourage

the local community to utilise these resources

- Meet the Newham diabetes champions and explore how they can potentially support the

group through their existing work in the community

- Continue to work with Diabetes UK, specifically around guidance and support on promote

support groups to local families

- Barts health team to support the promotion of existing support groups

…and raise awareness about mental health and available support

This is an overwhelming time for the young person and chances are, mental health

support will be declined.

After the young person has had some time to settle in with home and school life, they

should then be told about :

• future symptoms and risks, explained in a way that relates to their lives

• what kind of support is available and how to access it

(within 6 months of diagnosis).

Next steps:

- Mental health skills re-fresh training course for healthcare team

• Review warning signs

• How to converse in a way that will encourage young person to respond. ‘Non-

clinical approach’

- Questionnaire

• Youth commissioners to review and edit the existing questionnaire

• Focus on the wording to encourage young person to respond honestly

Mental health support should be explained and offered after a young person

has had time to digest diagnosis and not just at the point of diagnosis.

We have been sharing our work in the community and working with other project

supporting young people’s healthcare

23 July – participation in the Association for Young People's Health, NHS England's Youth Voice project

29 July – participation in the North East London Local Pharmaceutical Committee Supporting Young Adults to Self-Care workshop

31 July – presentation at the Barts Health Adolescent Steering Group workshop

4 & 20 August – delivery of the diabetes youth project community workshops in Newham

8 September – presentation at the Newham Annual General meeting

7 October – delivery of Phase 1 outcomes workshop

6 November – supported Healthy London Partnership CYP Launch Event (NHSE)

13 November – presentation at PEN & NHSE Children and Young People Regional event

28 October – Living with Type 1 diabetes presentation for City University nurse practitioners

10 November – Living with Type 1 diabetes presentation at the bioscientist national conference

We plan to continue our work in the community into 2016

PHASES

This project has bold ambitions to change the way that young

people diabetes services are commissioned across London. The

ambition is segmented into three phases:

Phase 1

A. Newham CCG implemented guidance

B. Implementation across Tower Hamlets and Waltham Forest

Phase 2 Implementation across UCLPartners member

organisations

Phase 3 London-wide adoption of commissioning guidance.

December 2015 • Finalise delivery and implementation plans

• Revise service specifications

January – May 2016• Support preparation for implementation of services changes, in particular working with

the transitions clinic

• Site visits where innovative diabetes care and technologies are being tested or

implemented

• Service review of Newham’s young adult clinic (16-25) to share successes and lessons

learned across WEL region

• Evaluation of transition clinic team work load to identify areas where further support

may be required

Impact on the commissioning process

Partnership working• It was recognised that healthcare services exist to help and support the people

• It was recognised that we have the same priority and are working towards a

shared outcome: a healthier community

• Commissioners and providers enter real dialogue to discuss the practicalities of

change, working side by side to provide high quality care for the local population

• Working together regularly provides a forum to share expertise and efficiently

facilitates change

Community involvement in healthcare• People are at the centre

• Community members are able to give feedback and recommendations about their

health care services, AND see services change

• Strengthens relationships within the community

• Increases likelihood of key messages being communicated to traditionally harder

to reach groups.

• Healthcare professionals get real-time, ongoing feedback from the perspective of

the people using the service

• Promotes ownership of healthcare

Phase one: Formative September 2015 to April 2016 (CLARCH – Evaluation)

Aim: To investigate how effective the project methods and techniques have been in the co-design and co-delivery of the initiative.

• Qualitative semi-structured interviews

with peer educators

Output: minimum of two hours of interview

transcripts describing the insights and

experience of being trained and supported in the

new role of Young Commissioner.

• Qualitative semi-structured interviews

with task group members (4-6 one hour

narrative accounts of establishing and

working with young commissioners)

Outputs: minimum of four hours of interview

transcripts describing where and how the youth

commissioners have added value to

organisation’s work and what adjustments were

made to accommodate the voices of Youth

Commissioners.

• Online questionnaire with workshop

participants.

• Outputs: Numerical survey data describing

20 to 25 cases of workshop participants

experience of the community workshops

designed and delivered by young

commissioner.

• Documentary analysis of all the materials

produced as part of the initiative to establish a

matrix in which to trace stakeholder involvement

in the process and identify the platforms and

spaces in which young commissioners voices

had been heard .

• Outputs: Thematic analysis of documents produced

through the project from the inception to penultimate

draft of the re-commissioning guidance. The specific

focus is on how Youth Commissioner’s assets are

defined, promoted, cultivated, and visibly exploited

to achieve the mission of the project.

• Skill training assessment

• Output: Completion of four youth commissioner

portfolios which we will review past, present and

future training needs and their aspiration for future

training.

• Baseline medical data of children and young

people living with diabetes in Newham.

• Output: Numeric descriptive data on the local

population living in Newham Inc. DKA, DNA, A&E,

Hospital Admissions Jan 15 to Dec 2015

Phase two: Summative December 2015 to December 2016 (CLARCH – Evaluation)

Aim : To examine the impact of the initiative in improving service delivery and promoting positive health outcomes for children and young people living with diabetes?

• Participant observations of task group meetings

• Output: Observation-participants notes detailing numerically and discursively when, where and what level of involvement the Young Commissioners participated in discussions and decision making as part of the task group.

• Track keys ideas and concepts using a tagging system

• Output: Using the framework developed through the documentary analysis develop indicators to tag and track the embedment and germination of key ideas and issues -emanating from the civic engagement activities – move from idea into policy or practice.

• Qualitative semi-structured interviews with young patients

• Output: Quota sample of a range of end users recruited through community clinics for half-an-hour semi-structure interviews focusing on their views and experience of the new services and what’s changed.

• Qualitative semi-structured interviews with service providers

• Output: minimum of three hours of interview transcripts describing the insights and experience of fostering and implementation of the new re-commissioning guidelines by service providers.

• Online survey to all community clinics in evaluation area

• Output: Numeric descriptive data which captures the views and experience of what’s changed following the implementation of the re-commissioning guidance by all local service providers.

• Composition and statistical analysis of baseline data (DNA, DKA, A&E and Hospital Admission Jan 16 to Dec 2016.

• Output: Data spreadsheet to measure what’s change in relation to health outcomes since the introduction of the new re-commissioning guidelines in the Newham Borough.

Children’s group – (red):

During this workshop the red group discussed what they thought was good and bad about seeing doctors in

general and ideas that could make the experience a better one.

Here are their ideas for improving services provided:

Ensuring that there is always a family member or friend in the room when seeing doctor to make

patients feel more comfortable.

Having a reward scheme to motivate younger kids

Making sure clients are informed of all long term effects.

Having things to do whilst the doctor is providing information. (less likely to zone out due to boredom)

Making sure doctors have a softer voice when speaking.

Talking about non-health related topics with doctor before discussing the problem. (may feel less rushed

and semi-formal )

Having a nurse on school site

Having friends with the condition who are the same age or a little bit older.

Making sure nurse or teachers who are aware of the client’s condition to socialize with the person

without treating them as the condition.

Take appropriate measures to build trust between client and practitioner.

Here are a few bad things about going to the doctors which the children highlighted:

There’s no WIFI.

Waiting times are too long.

Sometimes they make you feel anxious.

No regular doctor, seeing a different one every time you visit.

Appendix A - DIABETES YOUTH PROJECT – Summer workshop outcomes

Teens/young adults group – (Green):

Relationship with health care team.

The two key ideas further explored within this theme were private appointments and having a good 3 way

relationship.

Private appointments:

Young person can gain independence for being encouraged to attend appointments on own. (it’s best if

clinicians could initiate this with some input from young person to see whether this is what they want.)

Young person must feel confident that doctors will maintain confidentiality.

A private appointment with psychologist would be of benefit to young people because they feel more

comfortable discussing certain issues without parents which may also build the relationship with the

psychologist.

A good 3 way relationship between young person clinician and parents:

What is a good relationship? – Not judgemental; good understanding; open (easy to ask questions); non-

patronizing; trusting; honest; and empathetic.

How could good relationships be created? – Good listening (less writing and assuming); doctors should

show interest in patients outside life; clinicians could be involved with young person’s whole family to further

their knowledge of the young person; the doctor could smile more.

Virtual clinics:

Within this theme we discussed mediums which could be used to provide these virtual clinics. The two key

ideas we expanded on were skype/social media and IPADs.

Skype/social media:

It was suggested that Facebook groups, anonymous chat rooms and skype could be the best ways to carry

out theses virtual clinics.

We the thought about positives: Quick (able to ask questions whenever), more convenient and practical.

Then the negatives: maybe less personal; and patient may not have internet access.



IPADs were mentioned as an incentive for young people who are demonstrating good self-care. Additionally

the IPAD would only be used as a health aid to monitor and better their condition.

Apps that could be on the IPAD: Carb Counting, exercises (based on condition), recipes suitable for

diabetics.

The positives of this incentive is that it could promote better self-care; personalised to that young person’s

condition (stores all information about their diabetes necessary); health care team could have a link to

particular app data about the young person to monitor their progress; and more likely to used and kept that if

these apps were downloaded on personal mobile phone.

The negative are that the IPAD may be inappropriate to give to very young patients under 11s; also young

person may be likely to lie about that data which they input about their current health status (blood glucose

levels)

Peer support:

The two key ideas discussed within this theme were a mentor/ buddy scheme and stigma.

Mentor/ Buddy scheme:

We discussed how this could work. Suggestions such as support groups as well as being paired up with

someone by your health care team could work.

The benefits of a buddy scheme with two people who are going through the same treatment at the same

time. : become close friends as they can share the same experiences; and they can go out together and

learn how to care for themselves.

The benefits of a mentor scheme were also thought about. : It would be a good deal as you could as

someone questions about things your currently going through that they have had first-hand experience with.

Additionally t can help with telling your friends about the condition.



Stigma:

How could we breakdown current stigma about the condition?- By educating friends, teachers and peers.

This could be done through going into schools to do an assembly or during PHSE lessons.

Also through youth friendly posters that are eye catching with some form of cartoon character on it. These

posters could be displayed not only in clinics and schools but also on public transport.

Transitions:

We talked about having a gradual transition process and providing personal plans for young person.

Gradual process:

We thought that the whole transition should begin slowly from the age of 16/17. This is will ensure the

change is not as sudden as it currently is. Especially because during the 16-19 age range there’s a lot of big

changes going on in a young person’s life.

Young person should be able to meet all clinicians before their adult appointment.

Young person should also be given options as to when they begin transition.

From the age of around 11 young people with diabetes should be made aware of what transitioning is and

they should slowly be provided with necessary information to promote independence. Such as starting

private appointments.

A checklist should be offered to ensure that young person is maintaining good health before they are ready

to transition.

Personal plans:

Clinicians should give young person all information about their condition personally and their symptoms.

This personal plan should be created jointly between young person and clinician

This plan should consider the young person’s life outside of the condition.


Parents/Carers group – (blue):

Relationship with health care team:

Poor when diagnosed in A&E. told to “go and see GP” and discharged to take tablets, then 6 days re-

admissions.

Really good when diagnosed at a young age. Allows for longer time to develop good relationship.

Seen every 3 months is good.

Good advice is given.

Need consistency in messages received and also needs to be adapted to each individual, not one size fits

all.

Needs to be a whole team not just them (clinicians) and us (parents and patients)

Private appointments are a good idea but a follow up with parent/carer is necessary. Also allows parents to

have a 1-2-1 to discuss any concerns they have.

Pharmacies are not private enough.

Transition support for parents.

Virtual clinics and timing:

Adults may need training or option for face to face.

Need to be flexible with timings.

Also provide a yearly check-up face to face if virtual clinics are used.

Schools should be briefed if young person is going to attend virtual clinics on site. (promote the benefits as

to not missing school)



Parents/Carers group – (blue):

Peer support:

Workshop facilities to allow self-help and help each other.

Forum’s for young people’s life.

Parents support, particularly when newly diagnosed to allow parents to network.

Essential it is brought into schools for teachers who don’t understand.

Tackle particularly secondary schools.

Understand type 1 and type 2 differences.

Issues with outside catering in schools.

The issue of missing lunch (especially teens)

School transition is a major issue.

Newly diagnosed to be put in touch with another family going through the same thing to provide peer

support.

Transitions:

Needs to be at young person’s rate.(multiple sessions are necessary)

Issue of transition from school to uni.

Offer skype meetings.

Offer meeting in holiday times.

Understand around changing GP when gong to Uni.

All hospitals don’t provide pumps so if young person is moving away for uni this may be an issue.

Teenagers need to be trained on how adult services work.

An introduction to adult services.

16-19’s should get tough love.

newham ccg...children & young people’s services: reminder of the case for change dec 2014...

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