This document summarizes a webinar hosted by NHS England on developing person-centered outcome measures for childhood feeding disorders. The webinar discussed a project conducted by Great Ormond Street Hospital to engage parents and caregivers in identifying key concerns, impacts, service elements, and outcomes related to childhood feeding disorders. Through surveys and interviews, families consistently identified important areas to focus on to improve services for children and families affected by feeding disorders. Developing valid outcome measures based on families' priorities could enhance patient-focused care and help shape service improvements. Next steps include further engaging children and developing outcome measures to evaluate care quality and guide commissioning decisions.

1. www.england.nhs.uk
Powwows webinar series
Tuesday 10 November 2015
1pm – 2pm
Hosted by Sheila Lakey
Person-centred Outcomes team, NHS England
#Outcomes4me

2. www.england.nhs.uk
Sheila Lakey
Improvement Manager
Person – centred Outcomes Programme
Sustainable Improvement Team
NHS England

3. 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

4. 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

9. The child first and always
Developing Person-Centred
Outcome Measures for Childhood
Feeding Disorders
Rachel Bryant-Waugh and Lucy Cooke

10. 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.

11. 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.

12. 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.

13. 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

14. 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

16. 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

17. 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?

18. PCOM DESIGN

22. 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)

23. PROPOSED PCOM DATA
SET DESIGN

24. 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

25. 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…..

26. LESSONS LEARNT:
PCOM DESIGN PROCESS

27. 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

28. INSIGHTS GENERATED

29. 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

30. 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

31. 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

32. About care quality (from wider group)
ADD

33. About care quality (from wider group)
ADD

34. ELC national lead:
Georgina Craig
ELC Programme Manager
Email:
georgina@gcraigassociates.c
o.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

35. Public and Patient Engagement
Nasser Quhill- Public Engagement
NHS England

36. Topics Covered
36
• General principles of Patient and Public Involvement
• Good Practice / common pitfalls
• National Picture / initiatives
• Resources

37. • 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?

38. • 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

39. • 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

40. • Limited advertising or short timescales
• Lack of support
• Failure to pay expenses promptly
• Jargon
Common pitfalls

41. 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/

42. The National Picture
42
NHS Citizen
NHS People Bank
Participation Academy

43. Concept

44. 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

46. • A space for debate
• Citizens set the agenda
• NHS England belongs to
you, so does NHS Citizen.

47. 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.

48. Connectivity
ID Data
Store
Connective
Layer
Data Tools
NHS Citizen
NHS People
Bank
Other NHS
England
Systems
Participation
Academy

49. Concept

50. 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

51. 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
51

52. Questions?

53. 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