Can impact report 2013

Rohan Martyres

Richard O’Brien

The PACE Centre

Social Impact Report

2013

PACE Impact Report 2013

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Contents

1. Executive Summary ....................................................................................................... 4

1.1. Context and CAN Impact opinion ............................................................................ 4

1.2. Methodology ........................................................................................................... 5

1.3. Results .................................................................................................................... 5

1.4. Recommendations .................................................................................................. 5

1.5. Acknowledgements ................................................................................................. 6

2. Introduction .................................................................................................................... 7

2.1. Introduction to the PACE Centre ............................................................................. 7

2.2. Introduction to impact reporting ............................................................................... 9

2.3. Theory of Change (‘TOC’) ....................................................................................... 9

2.4. Combined ‘vision led’ and ‘stakeholder led’ approach ........................................... 10

3. Findings – The PACE Theory of Change ..................................................................... 11

3.1. Comprehensive Theories of Change ..................................................................... 11

3.2. Children’s Theory of Change ................................................................................ 12

3.3. Children’s Theory of Change – Detailed ................................................................ 13

3.4. Family’s Theory of Change ................................................................................... 14

3.5. Other providers’ Theory of Change ....................................................................... 15

4. Recommendations ....................................................................................................... 16

4.1. Principles for robust impact measurement and reporting....................................... 16

4.2. Confirm the Theories of Change as appropriate hypotheses ................................. 17

4.3. Identify key outcomes for measurement ................................................................ 17

4.4. Consider ‘impact risk’ ............................................................................................ 17

4.5. Identify appropriate indicators to measure outcomes ............................................ 18

4.6. Align PACE indicators with existing indicators ....................................................... 19

4.7. Align data and data comparisons with existing datasets ....................................... 20

4.8. Segment Stakeholders .......................................................................................... 23

4.9. Valuation ............................................................................................................... 23

4.10. Implementation – Longitudinal data collection ................................................... 24

5. Methodology – Stakeholder engagement and data collection ...................................... 24

5.1. Identifying stakeholders ........................................................................................ 24

5.2. PACE children ...................................................................................................... 24

5.3. The parents of PACE children ............................................................................... 25

5.4. Funders ................................................................................................................ 26

5.5. Local schools and referral bodies .......................................................................... 27


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5.6. NHS ...................................................................................................................... 27

5.7. Local authority (social care) .................................................................................. 27

5.8. Local education authority (‘LEA’) ........................................................................... 27

5.9. Department for work and pension (‘DWP’) ............................................................ 28

6. Results from Stakeholder led Theory of Change .......................................................... 28

6.1. Method of engagement ......................................................................................... 28

6.2. Outcomes for PACE pupils and their parents ........................................................ 28

Figure 1. Visual Theory of Change for PACE students and their families. ........................... 29

6.3. Local Authorities & Local Education Authorities .................................................... 30

6.4. Other education providers ..................................................................................... 30

6.5. Trust funders and fundraisers ............................................................................... 31

Appendix A.I. Evidence base – Outcomes & supporting quotations for students ................. 32

Appendix A.II. Evidence base – Outcomes & supporting quotations for parents .................. 34

Appendix A.III. Evidence base – General comments concerning PACE .............................. 36

Appendix A.IV. Evidence base – PACE strengths and weaknesses .................................... 38

Appendix A.V. Evidence base – Detailed list of ‘outcome chains’ in Parent interviews ........ 41

Appendix B. List of data sources and potential benchmark comparisons for children with

Cerebral Palsy .................................................................................................................... 42

Appendix C. Example of segmentation for measurement framework .................................. 46

Appendix D. Example of application of framework .............................................................. 47

This report has been generously sponsored by Clarke Willmott, a national law firm with a

specialist unit that deals with the legal issues surrounding child brain injury and in particular

injury caused during birth.


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1. Executive Summary

1.1. Context and CAN Impact opinion

The PACE Centre (‘PACE’) provides educational care and support for children with cerebral

palsy and other motor disorders. They provide this care though an innovative approach

involving Conductive Education, and combining intensive interventions from a range of

professionals in each classroom.

PACE commissioned CAN Impact to support the development of a reporting framework to

measure and document the social impact of their activities, for purposes of communication

and informing decision-making and strategy.

As an independent advisor, CAN Impact have provided PACE with guidance to create a

robust foundation on which to develop an impact reporting framework. A ‘Theory of Change’

(‘ToC’) methodology was selected in consultation with PACE staff as the most appropriate

foundation for a framework to meet the Centre’s needs.

As a result of our work with PACE, it is CAN Impact’s considered opinion that:

1. PACE’s approach to working with children with motor disorders and their families is

innovative, and through our work appears to be of excellent quality in meeting the

needs of a range of stakeholders, including children with motor disorders such as

Cerebral Palsy and their families.

2. PACE have evidenced a strong commitment to objectively demonstrating their

impact, and have a well-grounded understanding of the challenges and issues

involved therein.

3. PACE have developed Theories of Change that comprehensively describe how it

delivers impact for its material stakeholders, and have identified the key outcomes

and interim outcomes this involves.

4. PACE is now well placed to develop and implement a robust impact measurement

framework to demonstrate in quantitative terms the extent to which it delivers

outcomes and impact.


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1.2. Methodology

A series of Theories of Change for PACE were developed using a combination of vision led

and stakeholder led approaches (section 2.4). The stakeholder led approach involved

interviews and workshops with a sample of key stakeholders to identify all of the outcomes

experienced by children attending PACE, their families, and wider stakeholders. CAN

Impact and PACE staff collectively conducted 23 interviews across a range of stakeholder

groups, with a heavy focus on the parents of PACE children (15 out 23 interviews).

The vision led approach was developed through an initial workshop with staff, trustees

(including parent trustees) and the executive team and then further developed by the

executive team with input from CAN, and combining insights gained through the stakeholder

led approach.

1.3. Results

The primary results of this work are the development of four Theories of Change covering

three stakeholder groupings.

3.2 A Theory of Change of outcomes for children attending PACE

3.3 A technical, detailed Theory of Change focussing on the specific mechanisms

and primary ’feedback loops’ involved in delivering outcomes for children

attending PACE

3.4 A Theory of Change for families of children attending PACE

3.5 A Theory of Change for other stakeholders

1.4. Recommendations

CAN Impact have provided a suggested approach and full list of recommendations for PACE

(Section 4 below) to develop their impact measurement framework on the basis of their

Theories of Change. Key items are listed below.

- Identifying key outcomes for measurement

o Using the ToC to identify which are the most important outcomes for PACE

and their stakeholders

Key finding:

CAN Impact compared the vision led and the stakeholder led ToCs for consistency

and validation. The pathways of the two versions were in agreement and showed that

stakeholders’ judgement of outcomes delivered by PACE were congruent with those of

the management team and with the organisation’s strategy. The stakeholder led ToC

confirms that the vision led ToC is a suitable basis to start with impact measurement.


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- Identifying appropriate indicators to measure outcomes

o We have started some work on indicators (section 4 and Appendix B. List of

data sources and potential benchmark comparisons for children with Cerebral

Palsy) but there is a significant piece of work ahead for PACE in terms of

developing appropriate indicators for their impact framework

- Align PACE indicators with existing indicators and existing datasets

o When developing the framework PACE will need to consider the extent to

which their indicators and measurements are comparable with other data

sources. Comparability will enable clearer communication with local authority

and funders. What is unique about PACE also needs to be included and may

not be comparable.

- Segmenting stakeholders

o Segmenting stakeholders, particularly children, will help PACE to develop a

comparable framework. Segments can be based on age, function, level of

support etc but consideration should be given to national comparative

segments.

- Survey

o We recommend that PACE survey their stakeholders as a process to provide

some further validation of the ToCs as well as being as early stage in the data

gathering process.

1.5. Acknowledgements

We would like to thank all of those who participated in the stakeholder interviews and

workshops and the PACE staff who have facilitated us with this project. Particular thanks to

Sha Carter Allison, Ian Sansbury and Amanda Richardson at PACE, and to the PACE

parents and former students for their time and sharing their experiences.


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2. Introduction

2.1. Introduction to the PACE Centre

The PACE Centre (‘PACE’ or ‘the Centre’) is a charity and independent special school which

works with children with motor disorders, such as cerebral palsy (‘CP’).

PACE’s approach is based on the principles and practice of Conductive Education,

augmented by a range of other educational and therapeutic approaches, notably sensory

integration, Bobath and Augmentative Communication Strategies.

PACE's stated aims are as follows:

“PACE provides intensive educational programmes that transform the lives of children and

young people with physical disabilities and associated learning difficulties. Fundamental to

our approach is a belief in every child’s ability to learn and make progress, whatever the

physical or sensory challenges they face.”1

Their overriding goal is:

“to help children and young people with physical disabilities to achieve their potential and to

be as independent as possible in their current and future lives.”2

In addition to their work with children, PACE also works to support the families of children

with motor disorders. They provide parents with help and support through:

- day to day guidance

- counselling and practical help to support their children’s development

- being an advocate for the children and their families

PACE staff work using a ‘trans-disciplinary’ approach, which involves coordinated teams of

conductors, occupational therapists, teachers, physiotherapists and speech and language

therapists working together in the classroom to deliver an integrated curriculum.

PACE provides the following services:

- Parent and Child Services

o These services provide individual and group sessions which offer support and

advice to parents whilst exploring ways in which the baby or toddler can begin

to learn.

1 PACE – Strategy and Impact Report - 2012

2 www.thepacecentre.org/Groups/211120/About_PACE.aspx

http://www.thepacecentre.org/Groups/211120/About_PACE.aspx


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- Nursery Groups

o Incorporates i) a dual-placement programme for children who spend time at

PACE in addition to their local mainstream nursery, ii) a full-time nursery for

children with more complex needs, and iii) a sensory motor nursery for

children with complex sensory as well as motor needs.

- Primary Schools Services

o Provides a full-time integrated curriculum based on the principles and practice

of Conductive Education for children aged 5-11. This integrated curriculum

incorporates all aspects of the National Curriculum alongside the teaching of

self-care, communication and mobility skills.

- Secondary School Services

o This programme, for children aged 11-19, is located within a state-maintained

special school in Chesham and is a joint venture between PACE and the local

authority.

- Outreach, specialist and sessional services

o These services support children before, during and after a transition from

PACE into other educational establishments. There are also part-time and/or

periodic services for children who have never accessed PACE on a full-time

basis. It also incorporates a commissioned occupational therapy service into

a special school in Aylesbury.

An OFTSED report conducted in October 2012 on the services provided for children in the 3-

12 age range concluded that PACE was outstanding across all areas 3.

3 http://www.ofsted.gov.uk/provider/files/2097007/urn/131462.pdf

http://www.ofsted.gov.uk/provider/files/2097007/urn/131462.pdf


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2.2. Introduction to impact reporting

Impact reporting can take a number of forms and can follow a variety of methodologies.

PACE are developing an impact framework:

- To understand their impact better through engagement with their stakeholders

(parents, pupils, funders etc);

- To articulate that impact through a Theory of Change (see section 2.3 below);

- To measure the key outcomes of their impact in a measurement framework;

- To analyse those measurements and use them to communicate to stakeholders and

inform management decisions.

o Internal reporting will be used to influence strategy and business decisions

about where do work and what work to do.

- To help contribute to building a database for CP in the UK.

o The evidence available about cerebral palsy, both in the UK and wider, is

currently limited. As an example there are currently no national statistics on

the numbers of children and adult with CP in the UK. As an organisation

heavily involved in this sector PACE are engaging in improving the

understanding and evidence base for CP in the UK.

PACE commissioned CAN to help them formalise and articulate their impact reporting. They

plan to develop a reporting framework which can be used to measure and document their

current interventions and which can also be used to inform management decision and

strategy.

The work they are doing for children with motor disorders and their families is innovative and

PACE have recognised the need to provide evidence to support the outcomes they are

working towards.

We have been impressed by PACE’s approach to impact reporting. They are trying hard to

build a robust impact measurement framework and are planning on placing this framework at

the centre of their strategy and decision making processes.

They engaged us, as an independent advisor, to provide them with guidance in the first

stages of the process to help them come up with a robust foundation from which they can

now build the rest of the reporting framework.

Further details on the reporting framework have been covered below in section 6 below.

2.3. Theory of Change (‘TOC’)

CAN Impact have been engaged by PACE to work with the charity to develop an initial

impact assessment of the Centre. The basis of this assessment will be the development of a

‘Theory of Change’ for PACE.


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In this context, a theory of change refers to a summary narrative, often in visual format, that

orders and connects the following:

1. PACE’s activities;

2. the different outcomes (changes) experienced by the people and organisations that

influence or are influenced by PACE; and

3. PACE’s long-term objectives and vision of society that it hopes to realise.

For an introduction to one particular version of ‘Theory of Change’ development. using the

Aspen Institute Methodology, please see: www.theoryofchange.org.

CAN’s delivery followed the principles of the Social Return on Investment (‘SROI’. The work

described above does closely follow the early stages of an SROI report and could be

developed further, at a later stage, into a full report. There are, however, some assumptions

which will have been made for the ToC which may have been assessed differently if this

were a full SROI report. For more information on SROI, please see: www.thesroinetwork.org

2.4. Combined ‘vision led’ and ‘stakeholder led’ approach

A Theory of Change can be approached from two different directions:

1. Vision led (top down); this is created from within the organisation generally involving

a small working group made up of senior management and trustees;

2. Stakeholder led (bottom up); created from engagement with a range of stakeholders

through workshops, interviews and focus groups.

For PACE both a bottom up and a top down ToC have been produced and the results of the

two processes have been compared for consistency and completeness. This is discussed

further in section 3.

http://www.theoryofchange.org/

http://www.thesroinetwork.org/


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3. Findings – The PACE Theory of Change

A robust process was followed to develop a set of visual Theories of Change. This included:

- An initial workshop with PACE Trustees and staff to develop the parameters of a

‘vision led’ Theory of Change

- Interviews with other PACE stakeholders to develop a ‘stakeholder led’ Theory of

Change. This work was led primarily by CAN Impact.

- Parallel work with PACE staff, and a final workshop with PACE Trustees and staff, to

develop a comprehensive set of Theories of Change that combined the findings of

both the ‘vision led’ and ‘stakeholder led’ exercises. This work was led primarily by

PACE staff.

3.1. Comprehensive Theories of Change

The following figures outline the combined results of stakeholder led and vision led

exercises. To communicate what PACE’s interventions involve, four different diagrams were

produced with different emphases:

3.2 A Theory of Change of outcomes for children attending PACE

3.3 A technical, detailed Theory of Change focussing on the specific mechanisms

and primary ’feedback loops’ involved in delivering outcomes for children

attending PACE

3.4 A Theory of Change for families of children attending PACE

3.5 A Theory of Change for other stakeholders

Key finding:

CAN Impact compared the vision led and the stakeholder led ToCs for consistency

and validation. The pathways of the two versions were in agreement and showed that

the stakeholders’ feelings and thoughts about PACE were congruent with those of the

management team and the organisation’s strategy. The stakeholder led ToC confirms

that the vision led ToC is a suitable basis to start with impact measurement.


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3.2. Children’s Theory of Change


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3.3. Children’s Theory of Change – Detailed


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3.4. Family’s Theory of Change


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3.5. Other providers’ Theory of Change


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4. Recommendations

Each of the Theories of Change should form the basis of PACE’s impact reporting. They

identify the pathways, through interim outcomes, by which the charity will achieve its

strategic goals and objectives.

CAN Impact recommend that PACE uses these Theories of Change to develop and

implement a robust measurement framework to demonstrate PACE’s impact for its material

stakeholders. This would involve several stages, outlined below.

4.1. Principles for robust impact measurement and reporting

CAN Impact recommend that PACE adopt the following principles involved in developing a

measurement framework:

- Proportionality:

o Efforts to measure different aspects of PACE’s impact, including different

outcomes, should be expended in proportion to:

The extent to which they positively or negatively influence the impact

created for material stakeholders

The complexity and size of the particular aspect

The resources available

- Transparency:

o PACE are at the early stages of impact reporting. Once they have designed

their reporting framework and identified the key outcomes they want to

measure it will take time to develop the required standard of data.

o As this framework evolves over time the accuracy and robustness of the data

collection as well as amendments to the indicators themselves will improve

the quality of the reporting

o The variation in accuracy of data and the quality of indicators should be

including in any reporting

- Clarity

o The framework needs to explain the context of the impact reporting and

enable the reader to understand what the charity’s aim are.


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4.2. Confirm the Theories of Change as appropriate hypotheses

The three versions of the Theory of Change (excluding the detailed process map for

children) have been based on a sample of stakeholder interviews and the vision led work

from the PACE working group.

PACE should gather further evidence on whether these theories are appropriate for a wider

sample.

PACE have already begun to develop a questionnaire for parents of children attending the

Centre for this purpose.

4.3. Identify key outcomes for measurement

PACE should identify the key groups of outcomes (chain of events), and key interim and final

outcomes to be measured. This should be guided by objectives of measurement, which may

be multiple but are primarily concerned with:

- Demonstrating positive impact for different stakeholder groups, to secure support;

and,

- Understanding mechanisms of impact in ongoing operations, to further enhance

impact

Please note that not all of the individuals involved with PACE will experience all of the

outcomes in the ToC and not all will ‘travel’ along the pathway to the furthest outcomes, so

measurement of interim outcomes is essential.

4.4. Consider ‘impact risk’

Understanding the pathways and particularly key links will mean that PACE can understand

the areas which pose the largest risk to PACE’s impact. These risk areas can then be

addressed as part of the strategy and could form part of the reporting process to the

trustees.

PACE should identify the largest sources of ‘impact risk.’ These include:

- Inputs required from stakeholders

- Negative outcomes

- The ‘bottleneck’ interim outcomes on which multiple further outcomes depend.

Exact sources and levels of impact risk will need to be refined following quantification of

outcomes and valuation of outcomes.


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4.5. Identify appropriate indicators to measure outcomes

The selected outcome indicators must demonstrate clearly what it is that PACE does and

what changes as a result of those actions for different stakeholders. The indicators may also

need to address two potentially competing objectives:

1. Measure outcomes and aspects of impact that are important and unique to PACE

and its stakeholders.

2. Be compatible and even the same as indicators used within the wider sector, in terms

of both provision of services that deliver similar outcomes for similar stakeholder

groups to PACE, and in terms of relevant government and other policy.

o Comparability of PACE outcomes: The most useful element of the framework

for third parties will be the extent to which the outcomes are measured in a

manner comparable with other providers. This comparability is important for

PACE to address the ‘counterfactual’ question of ‘what would have happened

anyway’ for different stakeholders if a child had (a) not received support from

specialist providers, and/or (b) had attended an alternate specialist provider

instead of PACE.

o One outcome may require more than one indicator depending on its

complexity, the source of the data and how important it is.

Specific attributes of good outcome indicators are:

- Subjective & Objective

o It is important to engage with stakeholders and to understand their subjective

impression of outcomes. This needs to be balanced by an objective view

point which will often be other data sets (available statistics) or academic

research.

o Indicators should provide both a quantification of the outcome (often in

‘objective’ terms) but also attempt to maintain the depth of detail of the

qualitative information (often in ‘subjective’ terms); this may require two

different indicators.

- SMART

o Specific, Measureable, Achievable, Relevant, Time-bound. It is worth

considering these attritubutes for each indicator, particularly measureable,

achievable and relevant. It can be tempting to follow indicators that are

available but not relevant, or relevant but very difficult to obtain.

- Robust, verified through peer-reviewed academic.

o Aligned with available data sets.


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4.6. Align PACE indicators with existing indicators

To allow for comparability, PACE should align its indicators where possible with existing

indicators used in the fields of (a) education and (b) cerebral palsy.

Cerebral Palsy (CP) is an umbrella term for a group of disorders; definitions and sub-

classifications of CP continuing to evolve alongside the findings of medical and other

research.4 The Task Force on Childhood Motor Disorders have adopted a definition of CP

encompassing three areas:

1. Impairment of body structures (organs or limbs) or functions (physiologic or

psychological)

2. Limitations in activities (execution of tasks or actions)

3. Restriction of participation (involvement in life situations)

Regarding areas (1) and (2), some indicators commonly referred to in the academic

literature on CP are:

- Epidemiological classifications, such as:

o Spastic, dyskinetic, ataxic CP (including dominant/sub-dominant variations)

o Hypertonia (spasticity, dystonia) & hyperkinetic

o Topographic/limb specific sub-classifications (especially for hypertonia):

hemiplegia, diplegia, and quadriplegia/tetraplegia and triplegia.

- Gross Motor Function Classification System Extended and Revised (GMFCS-ER)

o A measure of ability of children with CP ages 1 – 18 to move generally

o 5 levels, from ‘walks without limitations’ through to ‘Transported in a manual

wheelchair.’5

- International Classification of Functionality, Disability and Health (ICF)6

o A measurement tool which is structured around:

Body functions and structure

Activities (related to tasks and actions by an individual)

Participation (involvement in life situations)

- The Functional Mobility Scale (FMS)7

o An outcome measure of the ability of children with CP to walk, incorporating

different assistive devices.

4 Susan Rethlefsen, Deirdre Ryan and Robert Kay (2010). Classification Systems in Cerebral Palsy. Orthopedic

Clinics of North America 41(4), p.457-467. 5 See Susan Rethlefsen, Deirdre Ryan and Robert Kay (2010). Classification Systems in Cerebral Palsy.

Orthopedic Clinics of North America 41(4), p.457-467. 6 World Health Organisation (2001/2010). International Classification of Functioning, Disability and Health.

http://www.who.int/classifications/icf/en/. 7 Graham, Harvey, Rodda, et al (2004). The Functional Mobility Scale (FMS). J Pediatr Orthop Volume 24, p.514.

http://www.who.int/classifications/icf/en/


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- Manual Ability Classification System (MACS)8

o A measure the ability of children with CP to use their hands when handling

objects

o 5 levels from ‘Handles objects easily and successfully’ through to ‘Does not

handle objects and has severely limited ability to perform even simple actions’

There are a range further other functional indicators used in the academic

literature.

These indicators do not specifically address non-functional outcomes for

children with CP. In fact, according to Rethlefsen et al (2010), there are no

systematic, validated scales to measure area (iii), namely restriction of

participation.9

Recommendations:

- PACE should use GMFCS-ER, ICF and perhaps MACS as minimum measures of

function.10

- Undertake further desk research to consider appropriate (academically verified)

indicators of relevance to PACE.

- As there are a vast array of indicators, PACE should consider consulting with leading

academics for advice. A primary academic contact in the UK would be Professor

Allan Colver (Newcastle University).11 A primary academic contact in the US would

be Jane Case-Smith (focusing on OT).12

4.7. Align data and data comparisons with existing datasets

There is a small but growing set of robust data on children and adolescents with CP and

outcomes of non-medical interventions they receive.

CP Registers and Surveys

The largest datasets on CP are ‘CP registers’ operating in multiple countries, including the

UK, countries in Europe, the US and Australia. These registers all collect data of children

with CP at or soon after birth. Such data includes: gender, age of mother at birth,

diagnosis/CP type, presence of epilepsy/seizures, GMFCS, and intellectual function. 13

8 Eliasson, Krumlinde-Sundholm, Rosblad, et al (2006). The Manual Ability Classification System (MACS) for

children with cerebral palsy: scale development and evidence of validity and reliability. Developmental Medicine & Child Neurology Volume 48, pp.549–554. 9 Ibid., p.458.

10 There is some robust evidence that GMFC and MACS are not correlated:

http://www.biomedcentral.com/1471-2474/8/50%20. 11

www.ncl.ac.uk/biomedicine/research/groups/profile/allan.colver 12

http://medicine.osu.edu/hrs/ot/faculty/jane-case-smith/Pages/index.aspx 13

Cerebral Palsy Alliance (2009). World CP Register Survey Report. Available at: http://www.cpresearch.org.au/pdfs/Report-of-the-international-survey-of-cerebral-palsy-registers-and-surveillance-systems-2009.pdf.

http://www.biomedcentral.com/1471-2474/8/50

http://www.ncl.ac.uk/biomedicine/research/groups/profile/allan.colver

http://medicine.osu.edu/hrs/ot/faculty/jane-case-smith/Pages/index.aspx

http://www.cpresearch.org.au/pdfs/Report-of-the-international-survey-of-cerebral-palsy-registers-and-surveillance-systems-2009.pdf

http://www.cpresearch.org.au/pdfs/Report-of-the-international-survey-of-cerebral-palsy-registers-and-surveillance-systems-2009.pdf


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However, these registers rarely collect longitudinal data or data related to ‘outcomes.’

Accordingly, they are likely to be of direct use to PACE only for providing a baseline on

demographics, such as helping identify the particular ‘types’ of CP that PACE focus on within

the broader ‘universe’ of CP and motor disorders, or perhaps very basic information on

whether children with CP have ‘ ‘sufficient access to health care and care coordination.’

Three of the more developed CP Registers are:

- Surveillance of CP in Europe (SCPE)14

o SCPE is a collaboration of multiple registers in Europe of children with CP.

o The register collates of rates of CP in children born in Europe, with a

breakdown according to CP subtype (defined epidemiologically, e.g.

Hemi/Di/Quadriplegia/Other, or spastic/ataxic/dyskinetic) .15

o These registers support a range of evidenced-based findings on outcomes

and indicators.

o For example, Beckung et al (2008) finds correlations between several

dependent variables (cerebral palsy types – spastic unilateral, spastic

bilateral, dyskinetic and ataxic; IQ, visual/hearing impairment) and ability to

walk.16

- SPARCLE17

o SPARCLE aims to discover the best ways of promoting the quality of life and

participation of children with cerebral palsy in Europe. SPARCLE stands for

the Study of PARticipation of Children with cerebral palsy Living in Europe.

The first part (SPARCLE 1) ran from 2004/2005. 818 children with cerebral

palsy aged 8-12 years were visited at home. The second part (SPARCLE 2)

started in January 2009 and the same children have now been visited when

they were 13-17 years old.

o The data is managed by Professor Allan Colver.

o Availability: online. Researchers seeking to undertake secondary analyses

of raw data are required to apply.

- Australian Cerebral Palsy Register (ACPR)18

o Electronic database of cases of CP registered in Australia (N=5160), with

data from 1970s onward. It aims to be a source of data to (academic)

researchers interested in: (a) monitoring of CP, (b) identifying interventions

that effectively improve quality of life, (c) identifying causal pathways to

enable prevention, (d) evaluating future preventive strategies.

o Collects data on: CP Type (Spastic, Ataxic, Dyskinetic, Hypotonic) &

Topography (Topography (‘Plegia), demographic data at birth, Impairments

(visual, hearing, speech, etc), GMFCS, and MACS (from 2012). It is unclear

14

http://www.scpenetwork.eu/en/publications/ 15

Cans (2000). Surveillance of Cerebral Palsy in Europe (SCPE): A collaboration of cerebral palsy surveys and registers. Dev Med Child Neurol 2000(42): 816-825. Available at: http://onlinelibrary.wiley.com/doi/10.1111/j.1469-8749.2000.tb00695.x/pdf. 16

Beckung, Hagberg, Uldall and Cans (2008). Probability of Walking in Children With Cerebral Palsy in Europe. Pediatrics 2008(121): 187-192. 17

http://research.ncl.ac.uk/sparcle/. 18

http://www.cpresearch.org.au/r_register.html

http://www.scpenetwork.eu/en/publications/

http://onlinelibrary.wiley.com/doi/10.1111/j.1469-8749.2000.tb00695.x/pdf

http://research.ncl.ac.uk/sparcle/

http://www.cpresearch.org.au/r_register.html


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whether MGFCS/MACS measured longitudinally (i.e. repeated measures of

individual children’s scores)

o Access to database: Unclear. Possibly only granted on application for

research access (involving ethics approval, etc)

- US: National Survey of Children with Special Health Care Needs19

o A Survey of approximately 100,000 respondents (parents of children with

special needs) over 3 surveys (2004, 2008, 2012)

o It surveys parents on the health and functional status of children with special

health care needs in the U.S, along with information on access to quality

health care, care coordination of services, access to a medical home,

transition services for youth, and the impact of chronic condition(s) on the

child’s family.

o High level data on the number of children with CP is available.20

o Availability: free of charge to US government and non-profit organisations

More generally, there are a very small number of large scale research projects involving

longitudinal measurement with many hundreds of children with CP. Only one of these has

published more than baseline measurement:

1. Ontario Motor Growth (OMG) Study21

A study following 657 children with CP in Ontario, Canada. Reporting on

existing data correlates child age with outcomes according to the Gross Motor

Classification System.

Importantly, this data can provide comparators on development of motor

function with age (‘motor growth curves’), albeit without the use of assistive

devices and without considering the quality of motor function.

Two further longitudinal studies currently underway are based in the UK:

2. Young people transition Study.22

This is a longitudinal study of 450 young people (aged 14 to 19) with ASD, CP

or Diabetes in the UK. The study will assess the effects of independent

variables (access to key workers, parental involvement, socio-economic

factors) on a range of outcomes: health and wellbeing, generic health status

and condition specific measure of disease control or management.

A range of indicators are used for all dependent and independent variables,

including the Warwick-Edinburgh Mental Well-being Scale (subjective well-

19

http://childhealthdata.org/help/dataset 20

http://childhealthdata.org/browse/survey/results?q=1878 21

http://motorgrowth.canchild.ca/en/Research/omg.asp 22

Colver, Merrick, Deverill, Le Couteur et al (2013). Study protocol: longitudinal study of the transition of young people with complex health needs from child to adult health services. BMC Public Health 2013(13): 675. Available at: http://www.biomedcentral.com/1471-2458/13/675.

http://childhealthdata.org/help/dataset

http://childhealthdata.org/browse/survey/results?q=1878

http://motorgrowth.canchild.ca/en/Research/omg.asp

http://www.biomedcentral.com/1471-2458/13/675


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being), EQ-5D-Y (Health outcome scale). CP specific measures at baseline

include: type of cerebral palsy, gross motor function, upper limb function,

intelligence, hearing, vision, communication, feeding, seizures.

This study is based on a dataset (‘SPARCLE’).

Recommendations:

- Consider adopting scales used in the OMG and two UK longitudinal studies, to allow

for benchmarking with their results.

A range of further studies and potential indicators is provided in Appendix C.

4.8. Segment Stakeholders

As the foregoing suggests, PACE should attempt to segment its stakeholders, particularly

the children participating in PACE activity, to facilitate measurement of outcomes.

This will be especially important for comparability of outcomes for children attending PACE

with cohorts within other settings (e.g. other specialist schools), and to compare with findings

of wider research in relevant sectors (e.g. education, medical research, etc).

A brief review of the publicly available literature suggests the segmentation could occur

within the broad parameters of selected indicators previously outlined.

Recommendation:

- For impact measurement purposes, consider segmenting children PACE according

to (at a minimum):

o GMFCS-ER / ICF (at baseline)

o Age

o Epidemiological (type of CP)

4.9. Valuation

Consider completing a holistic SROI study, to estimate value of PACE’s ‘soft’ outcomes

particularly for children attending PACE and their families, in addition to an estimate of value

of ‘hard’ outcomes with financial implications for public authorities.

One reference point for valuation is a 2008 economic on the cost of CP to individuals and

society at large in Australia.23

23

http://www.cpresearch.org.au/pdfs/access_economics_report.pdf

http://www.cpresearch.org.au/pdfs/access_economics_report.pdf


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4.10. Implementation – Longitudinal data collection

One of the most useful and robust sources of information can be comparing like with like

data over time. By committing to collecting information from the same subjects using the

same measure over a number of years, longitudinal trends can be gathered to provide

comparative data for indicators that are specific to PACE’s activities, particularly where

comparison with other data sets are not possible.

5. Methodology – Stakeholder engagement and data collection

5.1. Identifying stakeholders

PACE’s material stakeholders were identified initially through a workshop with PACE

Trustees and staff, and then augmented and confirmed in engagement with other

stakeholders.

‘Materiality’ was judged according to criteria suggested by the social return on investment

methodology.24 Specifically, a stakeholder group was considered material if PACE delivers

outcomes for them that are judged to be ‘relevant’ to their needs and objectives, and that are

‘significant’ to them by tangibly influencing their decisions and actions.

The table below shows the list of PACE’s material stakeholders, and the numbers and

methods through which they were engaged in the production of this report.

Stakeholder Number of Stakeholders engaged

Method of Engagement

Former PACE pupils 3 One-to-one telephone interviews

Parents of current PACE Pupils 15 7 One-to-one in-person interviews 8 One-to-one telephone interviews

Funders (Trusts & Foundations) 1 One-to-one telephone interviews

Local Authorities 1 One-to-one telephone interviews

Community Fundraisers 1 One-to-one telephone interviews

Primary & secondary schools 2 One-to-one telephone interviews

NHS N/A

Department for work and pension (DWP)

N/A

Total 23

Table 1: Numbers and method of engagement for PACE stakeholders

5.2. PACE children

24

SROI Network (2011), Supplementary Guide on Materiality. See: www.thesroinetwork.org/publications.

http://www.thesroinetwork.org/publications


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PACE is made up of the purpose built primary school in Aylesbury, an Early Years facility in

Aylesbury (soon to be replaced with a new Early Years and Independence Training Centre)

and a secondary unit housed in a special school in Chesham. In total the estimated number

of children being helped in 2013-2014 is 108.

Most children are introduced to PACE through self-referral by families, following

recommendation by other parents, web research or sometimes through recommendation by

other practitioners.

All children have motor disorders and the overall majority of PACE children have cerebral

palsy.

The table below provides a breakdown of children numbers by age group.

Age group Number of Children

Early years 33

Primary 42

Secondary 11

Outreach Service 22

Total 108

Table 2: Distribution of PACE children

Each of the categories above is spilt into groups depending on the type of service provided

i.e. early years includes some ‘Parent & Child’ groups as well as groups for children. The

age groups are also split based on the level of function of the child and the level of support

they require.

Due to the age and complexity of needs of PACE children we conducted stakeholder

engagement with the parents of the PACE pupils without their children being present.

In our sample of stakeholders we also included 3 former pupils who are now in their late

teenage years or early 20’s.

5.3. The parents of PACE children

The parents of PACE Centre children are most appropriately segmented using the same

criteria as their children, i.e.by their children’s age/cohort and level of ability / complexity of

need.

This group formed the largest section of our stakeholder engagement.


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5.4. Funders

PACE is funded through a number of income steams as outlined in the table below.

Item 2012 2011 2010

£ £ £

Voluntary income

Donations from trusts 674,426 729,307 358,010

Parental contributions 10,090 11,921 14,653

Activities for generating funds

Community and parent fundraising and events

486,186 325,709 384,730

Miscellaneous sales and other income 1,972 4,385 9,079

Investment income

Bank and deposit interest 3,279 8,894 8,188

Incoming resources from charitable activities

Local Authority pupil funding 1,512,045 1,532,794 1,597,471

Other invoiced services 480,792 441,519 305,541

3,168,790 3,054,529 2,677,672 Table 3: PACE income streams (data from 2012 management accounts and 2011 & 2010 audited accounts)

The three primary sources of funding are local authorities, trusts and foundations, and

community and parent fundraising.

Local authority funding stems from (publicly-funded) child placements of £30k-40k per full

time equivalent child. The majority of PACE children attract the lower level of funding (c.£30k

pa). Only 15 places are charged at the intermediate rate (c.£40k). PACE has recently

introduced a higher rate at £50k for children with very complex needs but no child places are

currently charged at that rate. The main LEA funders are Buckinghamshire (43 funded

children; £840k), Hertfordshire (10 children; £207k), Milton Keynes (5 children; £127k),

Hillingdon (3 children; £68k), Oxfordshire (3 children; £49k). There are a further 9 LEAs

which have placed 12 children (£231k).

Trust donations come from a range of organisations and come in a range of values. The two

largest revenue trust donations recently were received from Sobell Foundation (£20k per

year, 2011-2014), and the Eranda Foundation (£21k in 2013). In addition, large capital

grants have been received from a number of trusts including Garfield Weston (£500k), Henry

Smith (£130k) and The Rothschild Foundation (£100k).

Community and parent fundraising involves a range of activities and supporters. PACE

consider parent fundraising to be an important element of this but in addition they have a


Page | 27

core of approximately 1,100 ‘warm donors’ and active fundraisers. Fundraising events run

by PACE’s fundraising team include a bi-annual Children’s Challenge Event, bike rides,

running events, a golf day, flag relay and the PACE Tea Party Campaign. PACE also

conduct a monthly prize draw.

5.5. Local schools and referral bodies

PACE is the only specialist provider within Buckinghamshire working with children with

sensory motor disorders and/or complex physical disabilities. They provide services for

children that would otherwise either:

- attend a mainstream school, where they would also require additional support or,

- be accommodated by generalist special schools in the area.

PACE also takes children from LEAs other than Buckinghamshire and therefore reduces the

demand for services in those areas.

PACE have an occupational therapy team based at Booker Park School (a local special

primary school).

By virtue of its secondary unit, PACE has a close relationship with Heritage House School

which hosts that service. There are currently 10 children in that service.

PACE currently provides outreach services to over twenty children who attend 13 local

mainstream schools. These services involve the provision of periodic physiotherapy and/or

occupational therapy to help maintain the children’s function and enable them to access

other (typically mainstream) settings.

Other stakeholders

5.6. NHS

Children with CP and motor disorders will generally receive a significant amount of NHS

input. These can range from ongoing support from physiotherapists, speech therapists and

occupational therapists to one off interventions including surgery, for example to assist with

movement of limbs or curvature of the spine.

When a child is enrolled with PACE they typically lose access to therapeutic support

(physiotherapy, occupational therapy, speech and language therapy) provided by the NHS.

5.7. Local authority (social care)

Local authorities will also have long term involvement with adults with CP depending on their

level of independence, their function and their family support. Some adults will require high

level of social care on a daily basis and others will require relatively little support, if any.

5.8. Local education authority (‘LEA’)


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The LEA has responsibility for providing appropriate levels of education to children in their

area. The classification of what is appropriate is clearly a potential area of contention and

parents and the local authority can find themselves coming from different view points, which

can result in tribunal cases.

5.9. Department for work and pension (‘DWP’)

The impact for DWP is from the long term implications of CP. The extent to which the DWP

are involved with an adult with CP is directly linked to their level of independence and

function which will impact on their ability to work. The DWP will provide finance through

social security and benefits.

6. Results from Stakeholder led Theory of Change

6.1. Method of engagement

Stakeholders were engaged using semi-structured interviews, either by telephone or in-

person. Open-ended, non-leading questions were used to prompt interviewees on particular

topics. Please see Appendices for interview scripts.

Given the method of engagement, it is important to note that the outputs/outcomes

presented in this report are those reported by stakeholders. As such, the subsequent

section of this report are a reflection of the priorities of external stakeholders engaged, and

should not considered an objective or comprehensive representation of PACE’s social

impact.

6.2. Outcomes for PACE pupils and their parents

Outcomes for PACE pupils were identified directly through interviews with 3 former PACE

pupils and 12 parents of PACE pupils.

Figure 1 below outlines the broad connections between outcomes reported for PACE pupils

and parents. Please see appendices for full list of outcomes with quotations evidencing

outcomes, and the detailed list of linkages between outcomes by interview.

Please note that some outcomes identified during the interviews were not included in the

theory of change because they appeared to be highly specific to that child or family. As only

a sample of stakeholders were engaged, the list of outcomes represented in the final visual

Theory of Change should be revisited on a regular (e.g. annual) basis through further

stakeholder interviews.


Page | 29

Figure 1. Visual Theory of Change for PACE students and their families.


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6.3. Local Authorities & Local Education Authorities

Positive outcomes of PACE’s intervention

Maximises (physical) independence for children.

Children received very specialist support.

Worked with PACE to set up Heritage House to provide specialist secondary

provision which was lacking in the county.

Negative outcomes of PACE’s intervention

PACE do not always balance what is appropriate vs. what is best.

o Do not always see alternatives as appropriate

o This can position the local authority in a bad light

Other considerations

Concerns about the evidence for long term improvement; once PACE provision

stops.

Concerns about the balance of 'physical education' against the provision of an

academic education.

6.4. Other education providers

Positive outcomes of PACE’s intervention

Access to increased levels of support and physical treatment for the PACE children.

Heritage House have increased the level of support available to non-PACE students

as a result of having PACE on the site.

Increased ability to access sensory integration programmes.

Occupational theory provision has provided benefits to children with other disabilities

(other than CP), and improvements to the rest of the school.

Other considerations

Heritage House are concerned about the balance of academic and physical work

being done in the classrooms, and are concerned about a lack of expertise in

secondary provision. However, PACE believe any concerns about PACE’s expertise

in secondary provision are contradicted by the findings of a recent Buckinghamshire

review of Heritage House School.

They are also concerned about the lack of oversight and isolation of PACE within

Heritage House.


Page | 31

6.5. Trust funders and fundraisers

Outcomes for Trust Funders:

Successful investments – all investments in PACE have been ‘successful’.

Has helped the trust to meet its investment goals.

Has provided value for money.

More involvement of (Trust) trustees than with other investments, as the investment

is rewarding.

Other considerations of trusts

Would like PACE to be having a bigger influence by spreading their success.

Outcomes for an individual fundraiser:

Increased awareness of PACE amongst those who provide sponsorship.

Regularly cycles now whereas would not without the fundraising.

Lost weight, fitter, sleeps better, generally healthier as a result of the cycling. Now

keeps fit in between (events).

Other considerations of an individual fundraiser:

Receives good information to help with fundraising and helpful support.


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Appendix A.I. Evidence base – Outcomes & supporting quotations

for students

The following table provides quotations to evidence and elaborate on outcomes for PACE

students, mentioned in interviews with both former students and parents of current students.

Student outcome

Quote

More independent attitude and behaviour

Now, with “normal sibling rivalry, she can stand her ground.”

[Sibling] has become very mature towards disabled children – at the age of 10 knows how to interact. Will interact with other children “play fight with them”- through PACE and through friends at the weekend.

“The attitude and expectation that he has been able to achieve. Whether it is big or small things, it is achieving that is the main thing, that is motivating”

“Nobody could tell him to sit on the side-lines anymore! He probably would have sat in the corner most of his live, because [visually impaired, can’t speak, all 4 limbs affected]. That was the biggest relief.”

“now he gives as good as he gets” [with his siblings]

“[Child’s] first sports day – he wasn’t put in any races. He was really upset. ... ‘I want to compete. I don’t care if I’m last, I want to compete, and I want to cross the finishing line... That can-do attitude, that fierce independence has come from the PACE Centre...” “The approach is about not being a victim of your disability, but taking responsibility for your disability, your body, problem solving, finding solutions, a life attitude.... I’ve seen other children with a more passive attitude.... Yes, personality [is involved]… but I do think PACE’s approach, how they’ve regimented that, it has fostered this attitude in [my child]. He is responsible about doing his physio... I think the reason he has been as independent he has been in a mainstream environment, is because of early years in the PACE Centre.” “The great thing that PACE has given him is independence and attitude of mind toward his disability. [It’s] very much a ‘can do’ attitude, a ‘I will find a way’ attitude”

Increased communication

‘She can say what she needs.’ [paraphrase]. “She will soon put you in place if she is not happy”.

I saw that “another child with CP [at PACE] was shooting ahead” [A parent comparing their own child’s ability to community, pre-PACE, to any another child at PACE]

Reduced stress of family

‘If she can’t tell you want she want it is really stressful for everyone’ [paraphrase] “Everything that impacts on her will then impact on the family. So if she can stand and communicate then it is easier for everyone.”

(Negative) lack of educational curriculum

More of the academic side, more structure to homework. “it’s a bit here there and everywhere” “It’s a balancing act but without PACE she wouldn’t have had speech therapy and physio therapy.”

Increased physical functioning

Walking with sticks was a shock – to be so quick. “a lovely shock”

“The freedom to walk ... he loves it. He used to walk up and down the corridors at PACE.”

“He will be able to do so much more than we ever believed would be possible”

“I used to be there [at PACE] when a [another] young lad [who was also at PACE] couldn’t speak at all, had far more issues than I could have ever had. They helped him; they gave him the tools to have a simple conversation. They got him to a point where he was able to


Page | 33

Student outcome

Quote

transfer [himself into a chair] almost independently.

Improved self-esteem from increased function

“Went from being a child who always needed help to a child who could help others in the class”. Felt part of a group. “she felt that she was useful”

Within a 2 week play-away session – she was smiling – “she had not smiled for a year.” “She did not look us in the eye until she joined PACE”. Within 3 months she was making eye contact – had the confidence.

She used to sing “don’t stop me now” – which sums it up.

[We were told she] “wasn’t going to stand, walk, put feet on the floor”

“I’ve had an Orthotist [say] ‘I’ve not seen a child with his level of spasticity with so little deformity.’ This is because of high level clinical care because of PACE... [My child] has not had any surgery yet. And to have got to 15 [years old] without any surgery is quite incredible.”

Reduced burden on society

“I would like to think that with what she is learning here and now, and if she went on to be able to speak, because the ability is there to do that, ... at some point she would be able to work, she would be able to have a job, she’d be able to life a relatively normal (what ever that is) life... she won’t be a drain on society, and she’d be quite independent. ... Had she had the placement they [LA] wanted, she wouldn’t have done any of that. She would probably have ended up in her late teens, or after my days are over, living in residential care.”

Reaching full potential

“If it wasn’t for PACE, I wouldn’t be in a position where now I’m sitting back and looking at barristers’ chambers to apply to for work. I owe PACE almost a life debt. That’s how much I perceive how much they’ve helped me, to enable me to succeed”

He’s not going off for further education, we are comfortable with who he is... [But] PACE is giving him the opportunity to learn and to be just the best version of himself he could be”

“PACE tailor make the programme for every single child. As far as we are concerned, he reaches his full potential every single day.”

“I think PACE saved our lives, and helped save [my child]. And now, I can see him having a future, where as before, I had no idea if he had a future at all... But now, he is out in a big bad world. He will always need a lot of support, but because of change in his attitudes and expectations, and our expectations, now he has as future... [My child] has gone to the best school in the UK, in Europe [and maybe] in the world [for him].”

“We would have done anything to keep him [my child] there [at PACE]. We want to give him the best. We felt when we got to PACE we’d got him a Rolls Royce.”

“everyday he is there he will reach his potential on that day” “He is the kind of child that could be ignored – he is very passive. At PACE he is not bored and not left alone. In another environment he would be left alone... At PACE he is involved and stimulated all day”.

“The whole thing has really been life-changing. I am overwhelmed by the sheer amount of support that they offer, and what that support has enabled me to do. Looking to the future, what I could possibly achieve, 10-20 years down the line. It just doesn’t bear thinking, ‘what if I haven’t had PACE’s support.’ Because I know for a fact I wouldn’t be anywhere near where I am now, I wouldn’t have a hope of hell of going to university, let alone living in halls [of residence]. That’s how much of a life-changer, a game-changer is, to myself and other children, and my successor, who is probably coming through PACE right now… I owe them a life debt.” [Former student]

General help from PACE

“any issue phone them up, very approachable”

“PACE is like a family”

Child’s mother: “You owe everything to PACE’


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Appendix A.II. Evidence base – Outcomes & supporting quotations

for parents

The following table provides quotations to evidence and elaborate on outcomes for parents

of PACE students, mentioned in relevant interviews.

Parent Outcome Quote

Help with appointments

They will attend appointment with specialists (OT, x-ray, neurologist), and are “trained in specific disciplines and can speak their language”

Reduced stress “They just de-stress your life”.

[child becoming more independent freed up Parent:] “made me less claustrophobic”

Emotional support

“can have a cry and a moan”

“PACE becomes such a part of you, of your family. They are ... always there, you never feel alone, you never feel lost again – well I don’t. It’s the security to know when things are really bad, they’ll help you, you can rely on them. They’ll do the absolute best at all times for your child, that is already facing so many challenges on a daily basis.”

“you can just sit and cry”

Can pursue own life goals more

‘I wouldn’t have been able to have more children. I would not have had them if [my child] had not made progress’ [PARAPHRASE]

[child becoming more independent] “enables you to be a normal parent”

Improved adult relationships

Better relationship with husband – used to just talk about [my child] when he [my husband] gets home. Now can talk about other things.

“We would have divorced, if we hadn’t had PACE” “PACE makes sure all the family is involved- made sure [partner] had to learn how to stretch [exercises for child]”

Increased support from other parents

“Parents who do not have a disabled child do not understand”. ‘It’s like a mini community. I’ve met some really good people who understand what you are going through.’ [paraphrase] “we all support each other”

“It’s an absolutely enormous task bringing up a child with special needs, in every single way” “They [other parents] don’t get that you’re scared to go to sleep at night in case he doesn’t wake up, whereas another parent with a child [with disabilities] will.” “Without them [other PACE parents], we’d survive. But life would be a lot harder”

‘nice knowing people are there, in the same situation’

“We will have a good time when get together... It can help to avoid depression [as] it can be quite isolating being the parent of a disabled child. PACE helps to avoid this.”

Increased knowledge

“To learn more about my child and where to get help”


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Parent Outcome Quote

Increased knowledge (from other parents)

‘We moan to each other about it.’ [paraphrase] Everybody knows different things and can share “how to deal with different parts of the disability”.

“these tiny pearls of wisdom become enormous”

“When we’re looking for a holiday, we’re looking for where is the nearest hospital, not the nearest beach... ‘There’s an A&E two miles down the road’.”

Can be more a parent rather than just a carer

“I feel less like a taskmaster... and feel more like a mum.”

Increased time for other things

PACE “makes life easier”

Whole family is supported and gets involved in helping child develop

[From one sibling to another] “no [brother], hit [your brother] with your *right* hand” –emphasising the use of the weaker hand.

“PACE: you feel more supported as a whole family, and as a result the whole family benefits.”

Peace of Mind – short term

“I had peace of mind for the first time, really [since he was born]”

“This place is more than perfect. [My] child is happy, learning, loved and cared for.”

“the stress of having tears in the morning would be heart wrenching” [before the knowledge that child ‘is in the right place’]

“Complete relief that he is being looked after” “he’s getting what he needs for a better life”

Seeing child improved functioning

“[Him] having the freedom for him to walk over – in a fashion – to something, is absolutely massive to us. Our dream is to get him back to the state of heavily facilitated walking, so we can put him in a walker”

Knowledge of being a good parent

“We feel that by giving [our child] a placement at PACE, we have done our best to ensure he gets the best. And that, especially for me has his Mum, that has been paramount. I can look myself in the eye, and say you did your best, you tried your best, and you did the best.”

“Know that I’ve tried everything that I could do for her”

We would never have regrets we didn’t give him the best in those critical early years.”


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Appendix A.III. Evidence base – General comments concerning

PACE

The following table provides quotations to evidence and elaborate more general comments

made by interviewees concerning PACE.

General theme Quote

Availability of PACE staff & PACE attitude

Called up at 7pm and they are always still about – text at the weekend. “I call them angels”

“I can’t tell you how many times I’ve had professionals on the phone at 8 o’clock.” “ [Amanda – PACE’s CE] was on the phone [last week] for over an hour. They are like family. They are very generous with their time; they give beyond the call of duty.”

General attitude “Amanda Richardson [the CE] took a day out of her holiday to come to our annual review [at mainstream school]” “They completely act out their mission statement in every sense of their world. Their ethics, their clinical approach, their attention to detail, their high quality care, their can-do attitude. If a child can’t do something, they find a way.”

PACE’s determination and expectations

“They ask a lot. It *is* rigid. I have friends who wouldn’t send their children here because they think it’s brutal. I don’t feel like that. We see his skills develop far more, we believe, than we would if he was just being baby sat at his local school.... They are so committed and dedicated to getting it right. They look at every single aspect... They won’t give up until they find a way around it [the challenges facing the child]”.

“PACE becomes such a part of you, of your family. They are ... always there, you never feel alone, you never feel lost again – well I don’t - . It’s the security to know when things are really bad, they’ll help you, you can rely on them. They’ll do the absolute best at all times for your child, that is already facing so many challenges on a daily basis.”

“They love him as well” [PACE staff of her child]

PACE has a ‘We won’t accept no as an answer’ attitude. We will find a way.”

“Many schools have low expectations of children with complex needs. PACE have very high expectations.”

“Their resilience and unwillingness to back down, to admit defeat, even when the odds aren’t that great” “They are willing to go right against the odds. And they win. For the vast majority, they help.”

“Any input I could give was valued. Any questions or queries were received with a non-defensive approach. Outside of PACE I’ve felt shut out of care [and] a lot of defensiveness. Even though I’ve got more experience now than many teachers, you can be shut out from contributing.... I’m treated in an egalitarian manner, and I’ve always had a non-defensive reception. And I’ve not had that outside of PACE.”

PACE put child first

“It is very clearly a child-centred organisation. They very quickly build up a very trusting relationship with the family.”

“I was always confident that if PACE recommended something, [my child] would need it. And if [my child] needed something, PACE would recommend it. That’s not [the case] in mainstream [settings].” “You get lots of love; it’s a very caring and kind organisation… Since leaving pace, I’ve had bad experiences, when I’m not treated kindly, and [my child’s] needs have not been put first. It’s not just because of resources.”

“PACE will give completely impartial, child-centred advice. I haven’t been able to build up trust with others in general, outside of pace, because there are other agendas [in mainstream schools]”

General endorsements

“We know PACE Centre will always be there for us. PACE centre is like family – someone who has no political agenda, and deeply cares about my child. PACE centre’s care extends


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General theme Quote beyond any boundary; we face the future more confidently. They have prepared us well to prepare for the future… and we will always be part of PACE centre.” “What it’s given us is security and peace of mind. And overall, it has hugely benefited [my child], in his academic attainment, in his clinical care, in his self esteem and confidence... in his mental and psychological well-being. And as a family, we know there is professional support behind us…”

“What they offer over any other institution is that very high level of support and professional and personal commitment that they put into each and every one of their pupils, attaining the very best they can by the time they leave. And going on from that, giving them the tools and ability to be able to maintain what they’ve already gained.” [Former student]

“If you get them on your side, they are a game changer” [Former student]


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Appendix A.IV. Evidence base – PACE strengths and weaknesses

Interviews typically concluded with a description of PACE’s strengths and weaknesses as an

organisation. The following tables summarise the responses.

Strengths

Stakeholder Group

Feedback Item Description/Quotes

Fundraisers ‘Family’ culture “Feels like one big family”

Children at the centre “Kids are at the centre of what they do”

Good level of support “Provide good support to fundraisers and help with how to raise money” “Good work ethic from the chief exec to teaching assistants”

Schools Expertise & quality “Massive amount of expertise”; Quality of services (OTs) “Strength is in the provision of support to 0-11 year olds” “Undoubtedly an excellent organisation and provides a role for others to follow in primary provision”

Approachability “Approachability and willingness to engage”

Flexibility

Personal attitude “Dealing with people not business”

Stakeholder Group


Parents Good Advice “Accessing the right kind of people to talk about adaption” “Always listen to parents issues and giving advice”

Wider support “Very good about supporting families” “Helping them through the process of applying for grants” “The support for the tribunal has been very good”

Attending meetings “They come along to appointments” “PACE staff went to a wheelchair meeting and will then followed up with what equipment was needed”

Holistic view “They look at the whole child” “Having everybody on site- speech, language and OT all done together” “They look at every single aspect” “Trans-disciplinary approach... communication [within cross-team]” “They give whole family support”

Approachability and ‘any time’ support

“Can always get help, very friendly and helpful” “Any issue phone them up, very approachable” “Called up at 7 at they are always still about – text at the weekend. “I call them angels”” “The OT has been round to see them... out of hours sessions... Heather is going with them to the tribunal” “I can’t tell you how many times I’ve had professionals on the phone at 8 o’clock.”

Expertise “Qualifications and expertise – variety of expertise they have”

Going ‘above and “Staff employed work very hard and give that extra amount not


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Stakeholder Group


beyond’ seen in other schools” “Staff never unhappy to be there. It’s a vocation for them” “Always go that extra mile” “They are very generous with their time, they give beyond the call of duty”

Flexibility “Staff responsive to make changes if things not going well” “They won’t give up until they find a way around it [challenges facing the child]”

Method “The way they teach their children” “Incredibly family and child oriented. Spent a lot of effort getting to know your child – and do it with fun and love. Not going to a boot camp” Support and care with knowledge of children - “All individual children have their own goals”

Stakeholder Group


Students Never admit defeat “Their resilience and unwillingness to back down, to admit defeat, even when the odds aren’t that great... They are willing to go right against the odds. And they win. For the vast majority, they help”

Long-lasting help “If you get them on your side, they are a game changer” “And going on from that, giving them the tools and ability to be able to maintain what they’ve already gained”

High level of support “What they offer over any other institution is that very high level of support and professional and personal commitment that they put into each and every one of their pupils, attaining the very best they can by the time they leave” “It is a difficult thing to have a disabled child – staff did lots in their own time”

Focus on the individual “Uniquely competent to enable children to reach potential”

High expectations “Their approach to everything. They don’t give you limitations. They expect you to achieve as much as everything else. Even people with much more severe disabilities than me”

Peer support “Because if you see one person achieve something that you know, then you want to achieve that, or you want them to achieve because you are friends with them”

Model “Even just using the conductive education model is much better than any other school”

Weaknesses

Stakeholder Group


Schools Communication

Differences of opinion on approach between professionals

Not a weakness – but a challenge to be overcome – a healthy dynamic


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Stakeholder Group


Parents Travel Travel between different sites

Space Space is limited

Lack of structure More of the academic side, more structure to homework. “It’s a bit here, there and everywhere” “Once the provision is set up, need someone monitoring all the way through”

Lack of school trips “Do not do many school trips with the kids - could look at more things they could do”

Secondary provision (x3)

“The additional provision being built (new building) could have been providing secondary. Could have not expanded the early provision” “Have been saying for 5 years that they will provide the secondary. However the county council have not been supportive” “Wishes there was secondary provision – would take a burden off”

Support in school “Would be nice to have the additional support (ARP – additional resource provision) in the mainstream school”

Lack of communications “Suggest someone take lead on ‘transition to secondary’” “Provide list of what are options for secondary” “Be able to challenge staff”

Board of trustees “I’d like to think they had more autonomy rather than being influenced”

Managing change/expansion (1x)

“Not forward thinking” “At start, parents very involved. It’s hard to keep that core family/parental involvement, when there are so many kids” “Would be useful to have one person leading on expansion of services... things seem a little hit and miss”

Stakeholder Group


Students Link/collaboration with primary school

“There’s not that much recognition... they didn’t ever liaise with my primary school. It was kept as a separate thing. I think I could have achieved a little bit more. Particularly with how I was sitting on my desk at primary school, things like that”


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Appendix A.V. Evidence base – Detailed list of ‘outcome chains’ in

Parent interviews

Outcome Chain Number of stakeholders experiencing

Interview where it was mentioned

Better physical strength>more independence> less stressful 1 K

Better physical strength>more independence 1 H

Focus programmes > taught to dress himself 1 A

Better physical strength> started walking > distributing weight properly > reduced chance of further surgery/ less physical issues (deformity)

4 E, M, Q, J

Better physical strength> started walking > enjoyment 1 I

Better physical strength> started walking > more motivated 1 V

Communication aids & training > better relationship > less frustrating

3 K, L, H

Communication aids & training > better relationship > less frustrating > feels part of the family

1 M

Communication aids & training > learning rather than just cared for 1 D

Better sleeping patterns > less crying 1 K

Communication aids & training > can communicate needs > more independent

1 L

Confidence increased > more conversational > made friends at PAC

1 V

Confidence increased > belief that she can do things physically > felt part of a group

1 E

Confidence increased > belief that she can do things physically >will join in

3 P, D, V

Confidence increased > belief that she can do things physically 1 Q

Confidence increased > very confident with adult 2 A, V

Physio and speech therapy > toilet trained & swallowing 1 P

Physio and speech therapy > toilet trained & swallowing > does need to be gastro-fed

1 I

PACE have high expectation for children > child has attitude of being able to do things

3 P, A, Q

PACE have high expectation for children > child has attitude of being able to do things > positive attitude to hard work and home work

1 A

PACE have high expectation for children > child has attitude of being able to do things > better behaviour

1 M

PACE have high expectation for children > child has attitude of being able to do things > child feels involved in their education > enjoys school

1 J

Integrated curriculum into the conductive day > education fits his needs

1 P

Diagnosis was that he would only live to 5 (now 7) 1 M


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Appendix B. List of data sources and potential benchmark comparisons for children with Cerebral Palsy

There is a large and growing body of academic research into physical function outcomes for children with CP, and some limited research into

non-functional outcomes. The following tables outline some of the relevant research canvassed in an brief, informal literature review, with a list

of potential outcome indicators.

PACE should consider a more thorough literature review, in consultation with academics and researchers before deciding on the most

appropriate indicators and comparators for use in a PACE impact measurement framework.

Outcomes Measure (to develop outcome indicators)

Comparator datasets available

Function GMF (Gross Motor Function) Journal articles: Improvements in function of children with CP to due physiotherapy. - Review article: http://ptjournal.apta.org/content/80/9/873.full - Other articles: - (N=38) http://www.ncbi.nlm.nih.gov/pubmed/9593493?dopt=Abstract - (N=30) http://www.ncbi.nlm.nih.gov/pubmed/9112967?dopt=Abstract - (N=24) http://www.ncbi.nlm.nih.gov/pubmed/9593495?dopt=Abstract

Useful as a baseline measure.

Quality of Life / Participation Function Well being (including pain, behaviour) Parenting &

8 scales: - Life-H - KIDSCREEN - Strength and Difficulties

Questionnaire (SDQ) - Parenting Stress Index

Short Form (PSI-SF) - Child Health

Questionnaire - Pediatric Pain

Questionnaire

Journal article (Study Protocol): longitudinal study of what influences life participation and quality of life of adolescents with CP.

- Based on SPARCLE2 data by Allan Colver (N=818, aged 8-12 / 13-17) - http://research.ncl.ac.uk/sparcle/Publications_files/Published%20article%20SPARC

LE%202%20Protocol.pdf Scales:

- Life-H (5 to 20 years) o Covers: Communication, Personal care, Home life, mealtimes, Mobility,

Fitness, Recreation, Responsibility, Education, Community Life, Interpersonal relations

http://ptjournal.apta.org/content/80/9/873.full

http://www.ncbi.nlm.nih.gov/pubmed/9593493?dopt=Abstract



http://research.ncl.ac.uk/sparcle/Publications_files/Published%20article%20SPARCLE%202%20Protocol.pdf

http://research.ncl.ac.uk/sparcle/Publications_files/Published%20article%20SPARCLE%202%20Protocol.pdf


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Parenting well being

- Dimensions of mastery questionnaire

- Environmental questionnaire

o Frequency of participation questionnaire (13 to 20 years) - KIDSCREEN (8-18 years)

o Covers: Psychological, Emotion, Social support, Home life, Self perception, Autonomy, School, Social acceptance, Finance, Physical wellbeing

- Strength and Difficulties Questionnaire (SDQ) (8 to 16 yrs). o Covers: Emotional symptoms, Conduct problems, Hyperactivity, Peer

problems, Pro-social behaviour - Parenting Stress Index Short Form (PSI-SF).

o Covers: Parental distress, Parent-child dysfunctional, interaction, Difficult child,

- Child Health Questionnaire (8 to 18 yrs). Two questions on pain

- Pediatric Pain Questionnaire (13 to 18 yrs) - Dimensions of mastery questionnaire (14 to 18 yrs) - Environmental questionnaire (6 to 18 years).

o Covers: Physical home, Physical school, Physical community, Transport, Social support home, Social support community, Attitudinal Schoolteachers and therapists, Attitudinal classmates

Participation in life

Life-H scale covering 10 areas of life

Journal article: 1,174 Children with CP (aged 8-12), categorised according to GMFC and other measures of fine motor function. http://www.bmj.com/content/338/bmj.b1458

- Number of selected extra-curricular activities engaged in (sport, cultural, and quiet leisure activities)

Journal article: 114 children with CP (aged 10 – 12), categorised according to GMFC and MACS. http://onlinelibrary.wiley.com/doi/10.1111/j.1469-8749.2008.02051.x/full.

- Children with CP more likely to participate in organised sport than non-CP children, but at lower frequency.

- Activities Scale for Kids - Lifestyle Assessment

Questionnaire (LAQ-CP).

Journal article: 175 children with CP (aged 6 – 12), categorised according to GMFC and MACS. http://onlinelibrary.wiley.com/doi/10.1111/j.1469-8749.2006.tb01265.x/full

- Some children activities and participation is not explained by functional abilities and impairments

http://www.bmj.com/content/338/bmj.b1458

http://onlinelibrary.wiley.com/doi/10.1111/j.1469-8749.2008.02051.x/full

http://onlinelibrary.wiley.com/doi/10.1111/j.1469-8749.2006.tb01265.x/full


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Quality of Life CP CHILD and CP QoL scales

Journal article: Meta-review of 776 academic papers to identify most useful scales to measure ‘quality of life’ of school aged children with CP.http://www.biomedcentral.com/content/pdf/1471-2431-10-81.pdf

- CPCHILD and the CP QOL-Child demonstrated the strongest psychometric properties and clinical utility

- CP QoL-Child (N=205): http://onlinelibrary.wiley.com/doi/10.1017/S0012162207000126.x/pdf

o 53 item scale covering 7 domains: Social well-being and acceptance, Participation and physical health, Functioning,, Emotional wellbeing, Pain and impact ofdisability, Access to services, Family

- CP CHILD (N=77): http://onlinelibrary.wiley.com/doi/10.1111/j.1469-8749.2006.tb01227.x/pdf

o CHILD = The Caregiver Priorities and Child Health Index of Life with Disabilities

o Approx 70 item scale covering 6 domains

Participation in life (as an adult)

.

US National Child and Adolescent Health Measurement Initiative: http://childhealthdata.org/browse/survey/results?q=177&r=1 Measures ‘Number of youth with special health needs who receive services necessary to make appropriate transitions to adult health care, work and independence. Breakdown for individuals with CP likely available upon request.

Self-care Mobility Social function (2B, 2C, 2D, 3C)

Paediatric Evaluation of Disability Inventory (PEDI)

Journal article: Meta review of quality of life interventions for children with CP aged 0 – 18.

- http://beta.scie-socialcareonline.org.uk/improving-quality-of-life-of-children-with-cerebral-palsy-a-systematic-review-of-clinical-trials/r/a1CG0000000GfgOMAS

- 8 studies selected for quality (total N=347, average age 9 yeras in range 2 – 16

years old), found benefits of drugs, and some motor control interventions. Conductive therapy less effective than alternate, intensive therapy.

- PEDI scale of function and performance of children aged 6 months – 7 years: Covers self-care, mobility and social function. Available at: http://www.pearsonassessments.com

http://www.biomedcentral.com/content/pdf/1471-2431-10-81.pdf

http://onlinelibrary.wiley.com/doi/10.1017/S0012162207000126.x/pdf



http://childhealthdata.org/browse/survey/results?q=177&r=1

http://beta.scie-socialcareonline.org.uk/improving-quality-of-life-of-children-with-cerebral-palsy-a-systematic-review-of-clinical-trials/r/a1CG0000000GfgOMAS

http://beta.scie-socialcareonline.org.uk/improving-quality-of-life-of-children-with-cerebral-palsy-a-systematic-review-of-clinical-trials/r/a1CG0000000GfgOMAS

http://www.pearsonassessments.com/


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2B, 2D, 6C - Self-Help Scale of Developmental Profile 1

- Vulpe Assessment Battery (VAB)

- Questionnaire on Resources and Stress (QRS-F)

- Parenting Stress Index (PSI)

Journal article: Review of effectiveness of conductive education for children with CP. - (N=66, aged 12-36 months) (Reddihough et al, 1998

http://www.ncbi.nlm.nih.gov/pubmed/9881806. - Concluded CE not demonstrably more effective than alternative.

Scales:

- Self-Help Scale of Developmental Profile 1 1 including items concerned with feeding. dressing. Toileting and household chores (Alpern ct al. 1986).

- Vulpe Assessment Battery (VAB) (Vulpe 1982), observational measures rated by observers.

- Questionnaire on Resources and Stress (QRS-F) (Friedrich et al.1983) administered to caregivers.

- Parenting Stress Index (PSI) (Abidin 1986) administered to parents

3B, 3C, 3E, 4A, 5A

A series of indicators in the following outcomes areas:

- Community Inclusion and participation

- Independence - Lifelong Learning - Health and Well-being - Home and Lifestyle - Relationships and

Social connectedness

Outcomes framework for an organisation (Centre for Cerebral Palsy, Australia) - N=1,700 (including CP adults) - The Centre for Cerebral Palsy Individual, Family and Carer Outcome Areas –

Program Accountability for Disability Services Commission document and disclosure of evaluation framework.

- http://www.tccp.com.au/docs/documents/TCCP%20Quality%20Management%20Framework%20Final%2020100728.pdf

Broader societal benefits

- NHS: Hospital bed days for people with neurological conditions, following emergency and elective admissions

- Employment: Proportion of people with a neurological condition able to remain in employment

Publication: High level publications on policy reforms and outcomes for people with neurological conditions:

- http://mhpccom.wpengine.netdna-cdn.com/health/files/2012/08/Intelligent-Outcomes1.pdf

- Economic benefits of addressing care crisis, by Deloitte LLP & Scope:

http://www.scope.org.uk/node/23072

http://www.ncbi.nlm.nih.gov/pubmed/9881806

http://www.tccp.com.au/docs/documents/TCCP%20Quality%20Management%20Framework%20Final%2020100728.pdf

http://www.tccp.com.au/docs/documents/TCCP%20Quality%20Management%20Framework%20Final%2020100728.pdf

http://mhpccom.wpengine.netdna-cdn.com/health/files/2012/08/Intelligent-Outcomes1.pdf

http://mhpccom.wpengine.netdna-cdn.com/health/files/2012/08/Intelligent-Outcomes1.pdf

http://www.scope.org.uk/node/23072


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Appendix C. Example of segmentation for measurement framework

The table below has been included as an example for what could the segmentation and framework could look like for two groups of

stakeholders, the NHS and the LEA.

Student

Segment

Total #

students

(per

year /

over 5

year

period)

Example outcomes for government bodies

In childhood In adulthood

NHS: Ave no. of

surgical

interventions

completed (per

person over 5 year

period)

LEAs:

Number of additional students

entering mainstream schooling

(by age ??)

LAs:

Average additional

number of days

care avoided

(per person p.a.)

NHS:

Number of

emergency &

elective procedures

required (per person

over 40 year period)

DWP:

Average total

benefits

claimed p.a.

per individual

HMRC:

Average no.

hours work

employed per

week p.a. per

individual

Group A 5 / 25 e.g., 3 Achilles heel

operations @ £5k

e.g., 5 students: no specialist

support, 3 students: 10 hours

specialist support per week

e.g., 5 students @

52 days per year

Group B

Group C

Group D

Group E

Group F

Total


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Appendix D. Example of application of framework

The grid below is an example of how the measurement framework and the stakeholder

engagement can be used to help with strategic decision making. PACE’s focus for impact, or

their stakeholders perception of PACE’s impact could be charted on the matrix to identify

where work should be focused or where more communication needs to be centred.

Learning difficulties/ Physical disabilityHigh Level Low Level

Early Years

Primary

Secondary

Can impact report 2013

Documents

Transcript of Can impact report 2013