www.england.nhs.uk

Powwows webinar series

Tuesday 10 November 2015

1pm – 2pm

Hosted by Sheila Lakey

Person-centred Outcomes team, NHS England

#Outcomes4me

www.england.nhs.uk

Sheila Lakey

Improvement Manager

Person – centred Outcomes Programme

Sustainable Improvement Team

NHS England

www.england.nhs.uk

• Great Ormond Street (1): Psychological interventions in a specialist children’s

hospital

• Great Ormond Street (2): Childhood Feeding Disorders

• Guys & St Thomas’s: Animated PCOM for Hospital Inpatient Children

• Alder Hey: Children with chronic illness

• Nottingham Children’s Hospital: Children & young people admitted for self-

harm injuries/Eating Disorders

• University Hospitals Bristol: Children receiving palliative care

• North of England CSU: Young people & families living with asthma

• Shropshire CCG: Children & young people who use wheelchair and posture

services

PCOMs Pathfinder Sites

www.england.nhs.uk

Person-centred Outcomes future webinars

Date Webinar Speakers

15 Dec 2015

1pm – 2pm

Great Ormond Street Hospital

University of West Bristol and University

Hospitals Bristol.

Integrated Personal Commissioning

Programme

Daniela Hearst, Consultant Clinical Psychologist,

Head of Paediatric Psychology.

Dr Nicky Harris Palliative Care Paediatrician,

Visiting Fellow

Zoe Porter, NHS England

12 Jan 2016

1pm – 2pm

Shropshire CCG

Alder Hey Hospital

Wellness Measures

Fiona Ellis

Ian Sinha

Charles Alessi, Public Health England

9 Feb 2016

1pm – 2pm

Nottingham Children’s Hospital

Guys and St Thomas’

Dr Joseph Manning Research Fellow (Child

Health), Clinical Nursing Research Fellow / Charge

Nurse

Polly Crawford

8 Mar 2016

1pm – 2pm

Person-centred Outcomes Team

Review of programme and next steps

Register via our website #Outcomes4me

The child first and always

Developing Person-Centred Outcome Measures for Childhood Feeding Disorders

Rachel Bryant-Waugh and Lucy Cooke

Rationale

• Parents can reliably identify feeding and eating difficulties in their children

and express concerns about health and social consequences, often seeking help initially from primary healthcare providers. Research suggests that in a significant number of cases, clinicians do not address these concerns.

• Feeding difficulties are associated with high levels of parental anxiety and mealtime conflict which may increase risk of later development of an eating disorder. This makes timely and appropriate attention to issues that matter most to those affected extremely important.

• The primary aim of this project was to facilitate the development of PCOMs relevant to childhood feeding disorders that are evidence-based, systematically-derived and have high face validity.

Methods

Project completed in 15 weeks from February to May 2015 in 3 phases • Phase 1: A survey of 67 parents and carers attending the Feeding Disorders

Clinic at Great Ormond Street Hospital (GOSH). Open-ended questions probed for views in 4 target areas: Concerns, Impact, Service Elements and Outcomes. Themes emerging were checked for relevance through a focus group and interviews.

• Phase 2: Themes identified in Phase 1 informed the development of a Phase 2 questionnaire in which items in each target area were listed. A further 44 participants were asked to rate the importance of each item on a scale from 1 (‘not important’) to 10 (‘very important’).

• Phase 3: Eleven in-depth telephone interviews were conducted to further explore emergent themes to consolidate potential items for inclusion in a PCOM for childhood feeding disorders spanning the four target areas.

Findings

• Having a child with a serious feeding or eating difficulty is extremely challenging and stressful for parents and carers.

• Lack of understanding and support from healthcare professionals, as well as

friends and family members, together with an absence of local treatment options can leave some families feeling isolated and demoralised, further exacerbating the problems the family faces and hindering recovery.

• Families consistently identified a number of important areas to focus on in designing and delivering improved services for children, young people and families affected by feeding disorders.

Potential Impact

• The information obtained from this project could be used to inform clinicians about commonly reported important aspects of childhood feeding and eating difficulties as experienced by families themselves

• This knowledge could be used to guide assessment and intervention to ensure care is targeted in areas that matter most to children, young people and their families, thereby enhancing patient-focused care and helping to shape improvements in treatment and service provision

Next steps…

• Conduct further research with children themselves to explore their views in the same target areas

• Work up a set of PCOMs for childhood feeding disorders that can be trialled in different age groups and different settings using a range of delivery methods

• Use the feeding disorder PCOMs to track how well we and other healthcare professionals are doing to meet the needs and expectations of all affected family members in ways that matter most to them

• Use validated feeding disorder PCOMs to assist commissioners with specifications for appropriate service delivery

Clinical Commissioning Groups across the North East and Cumbria, Commissioning Group and South Tees Hospitals NHS Foundation Trust

A family asthma PCOM for clinical commissioners

Newcastle & Gateshead, South Tyneside

Clinical Commissioning Groups

06 NOV 2015

W

What is our aim?

Personal PCOM

“What are my goals?

What is changing in my life?”

Team feedback

“Are our patients achieving their goals? How are we helping them?

How are their goals changing? What can we do to be even better?”

Commissioner feedback

“Is our community achieving their goals?

How are those goals changing?

What difference is our current care model making?

Does investment / care model need to change?”

• How do we build from ‘personal PCOMS’ to informed commissioner decisions?

• What are the benefits and challenges of embedding PCOMs within commissioning? Can we derive 3 from 1?

PCOM DESIGN

PCOM TOUCH POINTS CHOSEN BY EXPERT FAMILIES IN NE ENGLAND

PARENTS 1. School life

2. Family life

3. Follow up and review of my child’s asthma

4. My relationship with doctors and nurses who look after my child

5. My feelings and beliefs about inhalers and asthma medicines

6. Supporting my child with their asthma medicines

CHILDREN

1. School life

2. Hobbies and sport

3. Getting a good night’s sleep

4. Controlling my asthma

5. My relationship with my doctor(s) and nurse(s)

PROPOSED PCOM DATA SET DESIGN

Average distance from goal compared to benchmark year

For each touch point (domain), a balance of quantitative and qualitative metrics

Quantitative

Net life improver score

Qualitative • How personal goals

are changing • Where people are

right now (compared to goal)

• What is working and what is stopping people achieve their goals

Are people closer to their goals? If not, is that because their expectations have risen compared to benchmark year?

Interpretation of PCOM data

Quantitative

Are we improving lives? = trend in net score

Qualitative • Conclusions about how

peoples’ expectations are rising/falling over time

• Insights into what is working well for people

• Insights into quality improvement opportunities that will enhance life

• The (actionable) implications for both providers and commissioners…..

LESSONS LEARNT: PCOM DESIGN PROCESS

Lessons from the PCOM development process

• CCG must think about contract design from the start

• CCGs in North East are keen to use PCOMs across providers to support integration e.g. specialist and primary care

• CCG GP clinical leads are key influencers

• Relevant commissioning managers must own and endorse the PCOM

• Communications, engagement or patient experience lead supports PCOM co-design and provides access to networks so that CCG reaches the right families

• PCOMs could become an effective vehicle for CCG engagement and improvement work

• PCOM data analysis is part of CCG business intelligence and need to be framed and funded in that way

INSIGHTS GENERATED

About care quality and experience

• GPs and asthma nurses are families’ main source of support with asthma care for most families

• Despite the fact that their asthma may be more severe, children supported by specialist asthma team in RVI are more in control and asthma has less impact on the things they tell us matter to them e.g. good nights’ sleep; sports and hobbies

• Parents and children tell us they like the reassurance of asthma reviews, but would like GPs to be more flexible about when and where reviews are held. They would also like reviews more frequently at peak asthma/allergy season

About care quality and experience • Children don’t like taking inhalers and feel they have to take medication too

often. What they would like to change most about asthma is having to take inhalers

• Carrying their inhalers is a ‘pain.’ They would like more compact inhalers

• Both parents and children shared how asthma takes away their ability to be spontaneous. Meticulous planning is important every day and whenever they do anything new

• Parents frequently adjust days out and family hobbies to accommodate their child’s asthma

• Parents tell us asthma impacts on the whole family’s ability to exercise e.g. they feel they can’t go on long walks because of their child’s asthma

• Parents harbour very negative beliefs about the long term impact of steroids on their child

About care quality and experience

• Teachers are often a barrier to a great school life. Supportive teachers who understand asthma really make a big difference to school life (especially PE)

• RVI specialist asthma services proactively link with schools, which works well and improves school life

• Not being able to play sports and do PE makes children feel different and isolated from their classmates

• Most children know very few others with asthma

About care quality (from wider group)

ADD

About care quality (from wider group)

ADD

ELC national lead:

Georgina Craig

ELC Programme Manager

Email: georgina@gcraigassociates.co.uk Tel: 07879 480005

Twitter: @GCAssoc @ELCworks

NECS national lead:

Sam Harrison

Senior Communications and Engagement Manager, NECS

Email: samharrison@nhs.net

Tel: 07900 662384

Public and Patient Engagement

Nasser Quhill- Public Engagement

NHS England

Topics Covered

36

• General principles of Patient and Public Involvement

• Good Practice / common pitfalls

• National Picture / initiatives

• Resources

• Legal Duty to involve

• Our values and constitution seek to put patients at the heart

of what we do

• We get a valuable new perspective

• Evidence suggests that co- production / joint working

produces services which are more responsive to local need

Why involve patients?

• Build patient and public voice (PPV) into mainstream work

• Resource PPV activities appropriately

• Think about how and when you communicate information

• Involve more than one PPV rep.

Good practice principles

• Be clear about the role and skills that is required

• Transparent recruitment

• Develop a Welcome Pack

• Expenses

• Involvement Payments

• Reviewing and meeting support needs

Good practice tips

• Limited advertising or short timescales

• Lack of support

• Failure to pay expenses promptly

• Jargon

Common pitfalls

Bite size guides

• Bite-size guide 1 – Principles for Participation in Commissioning

• Bite-size guide 2 – Governance for Participation

• Bite-size guide 3 – Planning for Participation

• Bite-size guide 4 – Budgeting for Participation

41

https://www.england.nhs.uk/ourwork/patients/participation/

The National Picture

42

NHS Citizen

NHS People Bank

Participation Academy

Concept

Current Picture

• No system in place to have a co-ordinated and managed approach to public engagement.

• Risk of continuing to approach engagement in an ad-hoc manner

• Opportunity to develop one system across NHS England

• A space for debate

• Citizens set the agenda

• NHS England belongs to

you, so does NHS Citizen.

People Bank

• To directly connect citizens to information about involvement opportunities

• Support citizens to get involved in participation activities through their

channel of choice (online, phone, SMS, mail).

• Provide the right information at the right time, and removing the burden from

users of the need to understand organisational boundaries

• Enable citizens to feedback their experiences of engagement / participation

to ensure that they are listened to and their comments acted upon.

Connectivity

ID Data Store

Connective Layer

Data Tools

NHS Citizen

NHS People Bank

Other NHS England Systems

Participation

Academy

Concept

Participation Academy

• Share learning and experiences

• Participate in learning opportunities and offer learning opportunities

• Identify useful tools and resources

• Link to other offline work

• Build evidence of effective participation

In Summary

• NHS Citizen – amplifying citizens’ voices

• People Bank – connecting people to formal participation opportunities

• Participation Academy – to learn and share participation skills and practice

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Questions?

www.england.nhs.uk

Person-centred Outcomes future webinars

Date Webinar Speakers

15 Dec 2015

1pm – 2pm

Great Ormond Street Hospital

University of West Bristol and University

Hospitals Bristol.

Integrated Personal Commissioning

Programme

Daniela Hearst, Consultant Clinical Psychologist,

Head of Paediatric Psychology.

Dr Nicky Harris Palliative Care Paediatrician,

Visiting Fellow

Zoe Porter, NHS England

12 Jan 2016

1pm – 2pm

Shropshire CCG

Alder Hey Hospital

Wellness Measures

Fiona Ellis

Ian Sinha

Charles Alessi, Public Health England

9 Feb 2016

1pm – 2pm

Nottingham Children’s Hospital

Guys and St Thomas’

Dr Joseph Manning Research Fellow (Child

Health), Clinical Nursing Research Fellow / Charge

Nurse

Polly Crawford

8 Mar 2016

1pm – 2pm

Person-centred Outcomes Team

Review of programme and next steps

Register via our website #Outcomes4me