Looking at how we can provide families living with cerebral palsy with the support they so desperately need
Prospects for children with cerebral palsy have improved vastly in recent years, but it is increasingly clear that more work still needs to be done to ensure that children with the condition are able to receive the specialist intensive intervention that will help them to achieve their full potential in life.
Some progress has been made. In recent weeks, the Department for Education has published guidance requiring health bodies to discuss with parents of children with complex developmental and/or sensory needs the intervention options available to them, including any voluntary organisations that are likely to be able to provide advice or assistance. The new guidance also requires health bodies to draw such children to the attention of the appropriate local authority, who must then consider whether the issue is sufficiently complex and long-term that an education, health and care plan assessment is appropriate.
Prior to this development, parents of children with conditions like cerebral palsy have typically received limited support and guidance between birth and the time their child began their early years education, resulting in them often feeling lost as to what approach they should take to ensure appropriate treatment for their child. This meant that many children missed out on educational and health interventions at an age when they would have had the greatest impact.
What is cerebral palsy?
Cerebral palsy is a motor disorder caused by damage to the immature or developing brain that occurs before, during or immediately after the birth of the child. With a UK incidence rate of around one in 400 births, or 1,800 children per year, cerebral palsy is a condition that can affect those from all social backgrounds and ethnic groups. It affects body movement, muscle control, muscle coordination, muscle tone, reflex, posture and balance. It can also impact fine motor skills, gross motor skills and oral motor function. It can also cause interference with the way in which sensory information is received, integrated, selected and transmitted through the central nervous system. A child with cerebral palsy can therefore experience cognitive, communication, visual, auditory and medical issues in addition to specific physical impairments.
Although cerebral palsy cannot be cured, early intervention, followed by intensive and integrated education and therapy can significantly mitigate its impact. With appropriate intervention, high levels of neuro-plasticity during childhood can be harnessed, allowing undamaged parts of the brain to take over some of the functions of the damaged part.
Why early intervention?
Many children and families only access intensive therapeutic intervention after (and sometimes relatively long after) a diagnosis of cerebral palsy has been obtained. In such cases, much of the opportunity for life-changing early intervention is missed, needlessly reducing the impact that can be made on a child’s motor function and life potential. Through early intervention, infants and young children with cerebral palsy can be helped to develop improved posture, muscle tone and movement patterns. Their motor learning at this early stage will form the bedrock of the independence they can achieve in later life.
Early intervention strategies are also important in involving other family members, particularly a child’s parents, in the learning process. In addition to providing a vital source of counselling and support to families, these programmes help to strengthen the parent-child attachment that can often be compromised as a result of the child’s motor disorder.
Early intervention is also a high-yielding social investment. In 2007, HM Treasury recognised the links between early intervention for children with disabilities and positive outcomes for those children and their families in terms of physical and emotional health and wellbeing, lower levels of stress, improved social development and a reduced need for more complex and costly interventions in later life. Children who receive early intervention are typically substantially more independent than they would otherwise be, significantly reducing the costs of their future education and care which would otherwise fall on the state, the voluntary sector and on individual families.
Early assessment and input
Despite the importance of early intervention, access to such services, particularly immediately after discharge from neo-natal intensive care units (NICUs), is extremely variable across the UK. For many children and families, the reality is that diagnosis and treatment will only occur if a delay in development is noted in the growing child. Voluntary organisations are increasingly seeking to address this issue by performing assessments and providing therapeutic input much earlier in a child’s life. PACE, a charity working with children with cerebral palsy in and around Buckinghamshire, is in the process of setting up a programme of post-NICU clinics, which will work with children at high risk of cerebral palsy (particularly those born prematurely or with birth complications) to assess and provide early therapeutic input. These clinics will provide an integrated assessment and therapy service to which young children with a high risk of motor disorder can be referred immediately after their discharge from the NICU, as well as individual and group therapy sessions, counselling services and referrals to other suitable pathways.
Such interventions are intended to complement, rather than compete with, existing provision within local health services. At the moment, the provision of post-NICU intervention within the voluntary sector is very limited, but there is a clear opportunity to replicate such services across the country if beneficial outcomes can be clearly demonstrated and more targeted funding made available.
Ongoing intensive intervention
The other reality for children with cerebral palsy is that further progress in movement and sensory skills (and therefore independence, communication, self-esteem and access to learning) can be maximised through ongoing intensive intervention throughout the child’s growing years. Specialist centres throughout the UK adopt many different intervention strategies including conductive education, Bobath, sensory integration and augmentative communication strategies. Programmes are typically delivered by a range of specialist practitioners, including specially trained teachers, conductors (practitioners in conductive education), occupational therapists, physiotherapists and speech and language therapists. There is no single accepted approach, but what is abundantly clear is that the best outcomes for children are achieved by centres that provide a specialist intensive approach that incorporates both learning and therapeutic input. What is equally clear is that only a minority of children in the UK have access to such intensive and joined up services through a relatively small number of specialist centres.
The way forward
Although the case for intensive, joined up intervention is compelling, there are still barriers preventing it from being a reality for all children with cerebral palsy. Action Cerebral Palsy is working with Paul Maynard, MP for Blackpool North and Cleveleys and the only MP with cerebral palsy, and with the Whitehouse Consultancy to seek changes in public policy towards children with cerebral palsy. This will include a parliamentary inquiry which will take place during the remainder of this year and which will report in December 2014.
The inquiry will explore the changes needed to broaden the provision of early intervention across the UK, to provide adequate funding for ongoing specialist and intensive input and to ensure proper training for all practitioners working with children with cerebral palsy. Following on from the inquiry, the aim is to push for the development of a national cerebral palsy strategy, along with the formation of a multi-agency taskforce to deliver it nationally.
If these things can be made a reality, it is to be hoped that every child with cerebral palsy in the UK will have consistent and early access to high-quality services, enabling them to achieve their full potential in their future lives. This will bring clear and evident benefits across our society, with less reliance on state and voluntary sector support and more positive outcomes for children, their families and their communities.
Seven-year-old Sonny Pikett was born ten weeks prematurely with asymmetrical cerebral palsy. This affects all Sonny’s limbs and means he has speech and vision problems.
Unlike many children with cerebral palsy who wait years to be diagnosed, Sonny’s parents were told during his first few weeks of life that, as a result of brain damage, he would have cerebral palsy.
When Sonny was discharged from hospital, his parents, Louise and Adrian, felt very isolated. They were uncertain about what the future might hold, having been given a number of worst-case scenarios.
Fortunately, Sonny was given weekly physiotherapy from only three weeks old, which his parents believe had a very positive impact on his development. As he grew older, Sonny also received occupational therapy, which focused on support with sitting and feeding. He also started speech and language therapy from 17 months old.
Whilst his parents were happy with the support Sonny was receiving, they felt that more intensive support would help him. So, from the age of three, Sonny started at a specialist centre for cerebral palsy. When he arrived there, Sonny was unable to walk or talk, he was unable to sit unaided and he had poor head control. His fists were permanently clenched and he had no finger control. He also had overly sensitive hearing, had unfocussed vision and was incredibly sensitive to touch. Overall, he was a frustrated little boy who could not access the world around him.
Four years later, Sonny is like a different child. He can now walk with a frame, can sit independently for long periods of time and can crawl to access the things he wants or needs. He also has much greater hand and finger control. His hearing, vision and concentration have all improved. He is showing an increased interest in books, new places and the world around him and has even tried skiing and horse riding. He is also trying to form words. Overall he is a much more confident child who loves going to school and being with his friends.
Cerebral palsy fact file:
- The current UK incidence rate is around one in 400 births.
- Approximately 1,800 children are diagnosed with cerebral palsy every year.
- There are an estimated 30,000 children with cerebral palsy in the UK.
- There are more boys born with cerebral palsy than girls. For every 100 girls with cerebral palsy, there are 135 boys with cerebral palsy.
- Just under a half of children with cerebral palsy were born prematurely (before 37 weeks gestation).
- One in three children with cerebral palsy is unable to walk.
- One in four children with cerebral palsy cannot feed or dress themselves.
- One in four children with cerebral palsy has a severe learning disability.
- One in ten children with cerebral palsy has no useful vision.
- About one in fifty children with cerebral palsy is deaf.
- About one in eleven children with cerebral palsy is blind.
- About one in four children with cerebral palsy is reported to have epileptic seizures.
- A child who is mildly affected by CP can expect to have much the same length of life as a child without CP.
- A child of two who cannot walk has a 75 per cent chance of living to adulthood
- Of a hundred children aged five who cannot walk, and cannot feed or dress themselves, 63 will live to 20, and 50 will live to age 30.
- A child of two who cannot walk, and cannot feed or dress him/herself, and has severe learning difficulties is as likely as not to live to age 25.
Amanda Richardson is Chair of Action Cerebral Palsy, the national consortium of specialist charities working with children with cerebral palsy and their families: