To improve the lives of Children/Young People with Cerebral Palsy by offering a high quality, standardised programme of regular physical and radiological examination, enabling early detection and treatment of secondary musculoskeletal conditions and facilitating multidisciplinary management.
1. Establish a standardised cerebral palsy musculoskeletal assessment system.
2. Establish consistent pathways of care for children with cerebral palsy.
3. Ensure equity of access to the pathway for all children with cerebral palsy.
4. Improve communication between members of the network team.
5. Identify children early who may need specialist intervention.
6. Reduce the number of complex surgical procedures required.
7. Improve transition to adult services.
8. Collect information to guide service provision and facilitate high quality research.
How does the Cerebral Palsy Integrated Pathway Work?
All specialists who treat children with cerebral palsy will have received extensive training and bring their own experience.
One of the aims of The Cerebral Palsy Integrated Pathway is to make the assessment of a child's musculoskeletal system (bones, muscles, ligaments, tendons and joints) more consistent so a child will be examined the same way no matter who sees them or where they live in the country.
All healthcare practitioners using CPIP are trained according to a programme developed by highly experienced experts in their field. This training is reinforced by annual updates.
Children with cerebral palsy have a risk of hip migration. This is where the hip joints very gradually start to come out of their sockets. We know that children with dislocated hips often get pain and difficulties with sitting, washing and dressing.
In the early stages, it is very difficult to tell if the hips are beginning to move out of place and therefore regular x-rays are required.
For the more mild forms of cerebral palsy, a child may only need 3 hip x-rays (at ages 2, 6 and 16). For the more severe types, annual x-rays are recommended from 2 to 8 with 2-yearly x-rays from age 8 to 16. Sometimes your specialist may suggest further x-rays in addition to these.
All children entered on to the Cerebral Palsy Integrated Pathway will be seen and examined by a trained specialist every 6 months from age 2 to 6 and every year until age 16 (18 in some regions).
At the moment, the examination focusses on the back, hips and legs. In the future, we are looking at adding arm and hand examination.
Every effort is made to include everyone so no one is left out or missed.
Once the examination and x-rays are done, the results are entered onto an electronic patient record. This was designed and is hosted by the Health Informatics Centre at the University of Dundee.
An individual child's information is accessible to specialists involved in their care. This means that if a physiotherapist examines a child, that information is immediately available to that person's orthopaedic surgeon and visa versa.
We may also use anonymised data about children to try an improve things for the future. All such uses will be subject to rigorous independent ethical approval and data protection requirements.
A Brief History of the Cerebral Palsy Integrated Pathway
In 1994, Sweden began a system of regular childhood physical and xray examination for children with cerebral palsy.
Uppföljningsprogram för personer med cerebral pares (CPUP) was started in Sweden in 1994 and adopted as a National Quality Register in 2005. It has since been adopted in Norway (2006), Denmark (2010) and Iceland (2012).
They have shown that with this patient management system, the chance of getting a dislocated hip or requiring major orthopaedic surgery reduces dramatically. Other benefits are being investigated and many peer reviewed scientific publications are available.
In 2010 a meeting was held in Liverpool with the aim of reaching a consensus regarding the management of hip problems in cerebral palsy.
Following this, a group of clinicians met later that year to discuss the possibility of introducing a hip surveillance programme, based on the Swedish model, for children with CP in Scotland. They agreed that a hip surveillance programme for children with CP was desirable for Scotland and basing it on the Swedish model was feasible.
Those attending the meeting (Miss Heather Read, Messrs Mark Gaston, Simon Barker, Donald Campbell, Jamie McLean, James Robb) Professor Gunnar Hägglund (Orthopaedic Surgeon, Lund, Sweden), Professor Peter Donnelly (Public Health, University of St Andrews) and Dr Paul Eunson (Paediatric Neurologist, Royal Hospital for Sick Children, Edinburgh) sought collaboration with paediatric physiotherapy colleagues to agree protocols for physical and x-ray examinations.
A group was established to develop resources to support implementation (Laura Wiggins, Lesley Harper, Nicola Tennant, Susan Quinn and Katie Kinch). Training for physiotherapists for the physical examination of children with cerebral palsy was provided and supported by The Association of Paediatric Chartered Physiotherapists (APCP) Scotland. Audio-visual support was provided by NHS Greater Glasgow and Clyde Medical Illustration Services.
The Cerebral Palsy Integrated Pathway Scotland (CPIPS) programme was formally established in 2013 with funding from the Robert Barr Trust, Brooke's Dream and the Scottish Government for three years. Funding continues through the Sick Kids Friends Foundation and other sources.
The APCP Neurodisability Committee hosted a study day in September 2015 to bring together paediatric orthopaedic surgeons, paediatricians and physiotherapists to learn about the Cerebral Palsy Integrated Pathway, its introduction across Scotland from the CPIPS Development Team and to discuss how to implement it in other areas of the UK.
Following the meeting, a national network of physiotherapists, paediatric orthopaedic surgeons and paediatricians was established with support from APCP, the British Academy of Childhood Disability (BACD) and the British Society for Children's Orthopaedic Surgery (BSCOS).
In 2016, Stephen Cooke secured funding for the 1st region in England and CPIP West Midlands was established. Implementation of CPIP is now spreading across England, Wales and Northern Ireland with several areas having set up their own regional networks.
In 2019, colleagues from the Republic of Ireland joined the network in order to support the implementation of CPIP within Ireland.
Cerebral Palsy Integrated Pathway UK & RoI Map
The slideshow below shows how far we've come in the last few years. Red areas have no standardised patient management system (PMS), amber areas are using a standardised PMS but no electronic database and green areas are using the web based CPIP system.
Why we think it's a good idea.
Cerebral palsy is the most common cause of childhood physical disability in the Western World yet we still don't know even some basic facts such as...
How many people are affected and how severely?
What assessments and treatments are being carried out?
What are the outcomes of these interventions?
Large studies have shown that...
Up to 75% of children with cerebral palsy experience pain.
One third suffer hip displacement.
4 in 10 undergo major orthopaedic surgery.
Uppföljningsprogram för personer med cerebral pares (CPUP) has been in place in Sweden since 1994. They now have over 20 years of information and have shown that regular surveillance dramatically reduces the number of children suffering a hip dislocation (to less than 1%) and reduces the number requiring orthopaedic surgery (to less than 15%). These are just 2 of over 80 peer reviewed scientific publications by the CPUP group, a number growing all the time as more and more knowledge is gained.
The Cerebral Palsy Integrated Pathway Scotland (CPIPS) was based on CPUP and is showing similarly impressive improvements in outcomes (see video below).
Several important guidelines from the National Institute for Health and Care Excellence (NICE), the National Confidential Equiry in to Patient Outcome and Death (NCEPOD), Getting it Right First Time (GIRFT), the Francis Report and others support the development of evidence based integrated care pathways, consistently applied across the country collecting and sharing important data to improve care and make children's lives better. More information can be found here.
Whilst we don't claim that the Cerebral Palsy Integrated Pathway solves every problem, it is a step in the right direction. Better, more consistent musculoskeletal assessment, surveillance x-rays, established pathways, enhanced communication and high quality data collection shared with those who need to know will undoubtedly enhance the care of children with cerebral palsy.