Impact case study database

The NICPR defines prevalence and needs of children with CP via ongoing, robust surveillance. This surveillance and associated research has:

1. Enabled review of existing services and development of new services, providing access to specialist care for all children with CP in NI. Beneficiaries include children with CP and their families who receive tailored, goal-orientated health and education, designed to meet population-level needs; and community-based healthcare staff who now have access to tertiary expertise and new clinical services. Examples of our impact on service review and development include:

1. NICPR data and research (R1,3) underpinned the business case for a tertiary paediatric neurodisability service that was established in late 2013 and serves all of NI, providing specialised management of movement disorders to up to 600 children annually. [S1]

Within the neurodisability service, data provided by the NICPR provided the basis for the business case and staffing profile for the award winning evidence-based upper limb service and pathway. ‘ *The upper limb service is now seen as the ‘gold standard’ throughout the UK and was recognised as the ‘Most Effective Adoption and Diffusion of Best Practice’ in the Health Service Journal (HSJ) Awards 2016.*’ [S1]

NICPR data also informed the case for introduction of local splinting clinics in all five Health and Social Care Trusts (HSCT) in NI. ‘ *This has improved access to splinting services for many children with CP (approximately 120 children per year) as there are now monthly splinting clinics in each trust, instead of having to travel to the regional centre.*’ [S1]

1. NICPR data (R1) was used to justify the creation of a new joint Paediatric/Orthopaedic service in the Western HSCT in 2015. The Western HSCT is geographically dispersed and most distant from the NI regional orthopaedic centre. The new dual-speciality service reduces the travel burden for 90 children/year [S2] and provides holistic, family-centred care. A 2017 patient satisfaction survey [S3] revealed 100% of respondents to be happy with the new service as ‘ *parents value having the opportunity to see an orthopaedic surgeon about their child’s CP at the same time as their paediatrician.*’ [S2]

2. NICPR data has been used by a NI charity (Mae Murray Foundation) that focuses on inclusion, particularly of children and young people with disabilities and their families. The charity challenged proposals by the NI Education Authority to remove specialist education schools for children with physical disabilities, using NICPR data to rebut the Education Authority’s claim that the proposals would affect a small number of children. The value of the NICPR data is evidenced by the following testimonial from the Chairperson of the Mae Murray Foundation: ‘ The evidence provided [by NICPR] allowed us to make a strong and convincing case that there is a substantial number of children and families affected by Cerebral Palsy whose rights to education, which are enshrined in the UN Convention, are at risk of being jeopardised by the proposed changes. The evidence provided by the NICPR has been also referenced in correspondence with Permanent Secretary for NI, the Children’s Commissioner, the Children’s Law Society, and we are also considering approaching the Human Rights Commission on this matter. *I will emphasise at this point that without the data and the information that NICPR were able to provide to and organise for us, we would have had a very difficult task in rebutting the information the Education Authority was giving to parents.*’ [S4]

2. Developed internationally-adopted, cost-effective tools to describe CP that improve communication and reduce assessment burden. Beneficiaries of these tools are children with CP, their families, and healthcare professionals, as they reduce assessment burden and provide a common language facilitating transparent communication. For example:

1. As a partner in a European research consortium (SCPE) (R3), Parkes contributed to development of decision and classification tools for CP. These harmonised definitions and tools are used internationally improving communication about CP. In 2018 SCPE reported that over 21,000 European children with CP have been assessed using these tools (R3), including over 2,000 children from NI (R1). A 2014 survey demonstrated that internationally, 63% of all CP registers use SCPE definitions [S5].

2. The ‘family report’ of the Gross Motor Function Classification System (GMFCS), developed by Kerr and McDowell (R4), built on the work of Palisano and colleagues (CanChild, McMaster University, Canada). The family-report ‘ presents an option for parent involvement in classifying children's motor abilities’ [S6], has been translated into 14 languages and is freely available online. A 2018 study [S7] reported that 71% of families, that were aware of their child’s GMFCS level, found it useful for collaborative goal-setting with clinicians.

3. Kerr and McDowell’s ‘one-minute walk test’ (R5) is used in routine clinical practice by the NI Gait Analysis Service with approximately 50 children per year. The Gait Analysis Service Manager reported that it reduces assessment burden and ‘ provides us with reliable and meaningful results’. [S8]

3. Informed UK and international standards of care that benefit service commissioners, planners and policy makers as well as clinicians and, ultimately, children and families.

1. Thirteen publications by Parkes, and/or using NICPR data, are included in the 2017 NICE guideline on assessment and management of CP in under 25s [S9]. NICE provide national guidance, advice, quality standards and information that are considered international ‘best practice’. Parkes’ contributions informed recommendations for recognising and discussing speech issues, assessment of mental health problems, and assessment and management of comorbidities in CP.

2. The NICPR was one (of only two) representative registers contributing data to the 2018 UK National Confidential Enquiry into Patient Outcome and Death (NCEPOD) [S10]. NCEPOD reported higher rates of healthcare consultations, poor communication with patients and multi-disciplinary teams, and inadequacies in NHS data collection and coding for children with chronic neurodisabilities (R2). NCEPOD made 35 recommendations for action by NHS staff, systems and services, commissioners, general practitioners, regulators, Royal Colleges and Specialty Associations, with the overall aim of improving care provided to children and young people with chronic neurodisabilities. The NCEPOD report has already prompted joint working with numerous partner organisations to ensure a consistent approach to long-term ventilation of children and young people with chronic neurodisabilities [S10].

Inclusion of NICPR data and research in these seminal guidelines [S9] and reports [S10] demonstrates the quality, significance and reach of the NICPR’s work in care planning and policy.