Education of Children with Cerebral Palsy

Philip Hollobone Excerpts

Tuesday 9th December 2014 Westminster Hall

[Mr Mark Hoban (Fareham) (Con)]

I thank my hon. Friend the Member for Blackpool North and Cleveleys (Paul Maynard) for securing this debate and generously asking me to open it. My first event as a Member of Parliament was a fundraising evening for the Rainbow Centre, a charity set up by parents to enable their children with cerebral palsy to benefit from conductive education, a therapy pioneered at the Peto Institute in Hungary. At that point, the Rainbow Centre was above a carpet shop in the centre of Fareham; they were not the most salubrious premises, but it demonstrated the parents’ commitment. They were prepared to go there during the week and on weekends, often carrying their children upstairs so that they could benefit from the education provided there. Children came from as far afield as Hampshire, Sussex, Dorset, Wiltshire and the Isle of Wight.

Now the Rainbow Centre is in a purpose-built building in Fareham, and can offer support to more parents and their children. It also uses the techniques of conductive education to help adults with multiple sclerosis and Parkinson’s disease and those who have had strokes. My engagement with the Rainbow Centre led me to become involved in a parliamentary inquiry supported by Action Cerebral Palsy, an umbrella organisation for charities across the country supporting children with cerebral palsy. My hon. Friend the Member for Blackpool North and Cleveleys led the inquiry, and a final report will be published next month.

I will say a little about cerebral palsy to set the context for my later remarks. It is a motor disorder caused by damage to the immature or developing brain that occurs before, during or immediately after birth. In the UK, 1,800 children a year, or about one in 400 born, develop cerebral palsy. The condition can affect those from all social backgrounds and ethnic groups. At some point very early in life, either while a baby is growing in the womb, during birth or shortly afterward, something happens to interfere with the normal development of the brain or to injure the brain tissues. That abnormal development or injury disrupts the nerve signals sent along neural pathways between the brain and the muscles, leading to problems with movement, posture and co-ordination as the child develops. This is called cerebral palsy.

As cerebral palsy is a condition of very early childhood, the implications for the developing child cannot be ignored. During the formative years, the central nervous system develops rapidly, enabling the child to learn, explore and connect with their social environment. It is during those crucial early years that the ability to learn develops. Children with cerebral palsy are hindered to varying degrees during that process as they battle to learn fundamental skills related to their symptoms. Therefore, cerebral palsy should to a significant extent be considered as a problem of learning, rather than a problem of functioning or communicating.

Early identification of cerebral palsy and early intervention can help tackle problems of movement, posture and co-ordination. Between the ages of nought and two, a child has a high degree of neural plasticity, which can be harnessed with appropriate programmes in order to remap the neural pathways between brain and muscle, enabling children to overcome problems of movement, posture and communication.

I have seen for myself the huge progress that children have made at the Rainbow Centre through early intervention. Children whose parents were told that they would not walk now can; children said to have high degrees of dependency are now independent. Everyone who has been to the Rainbow Centre or similar centres around the country comes away moved by the sight of children, parents and educators working together through an educational programme that helps children improve their motor skills and rebuild those neural pathways. We can make adaptations to accommodate the physical symptoms of cerebral palsy—for example, we can provide ramps for wheelchairs—but it is so much more powerful and rewarding to work with children to rebuild their neural pathways so that those ramps are not needed.

There were several recurring themes in the inquiry, including problems with early identification. Also, once CP has been identified, parents are more likely to have to fight to get the right support for their children than to find it easy to obtain. There is poor signposting to centres offering appropriate programmes, a reluctance among some local authorities—including Hampshire county council—to support the work of specialist providers, and reduced access to specialist services as children get older. In many respects, those issues are not unique to cerebral palsy, and I commend the Government for their reforms relating to special educational needs and disability.

Those giving evidence in our inquiry warmly welcomed the intentions behind the Government’s reforms, which are widely believed to have the potential—I emphasise the word “potential”—to transform the lives of people with cerebral palsy. The introduction of education, health and care plans, which will provide statutory protection, comparable to that provided by statements of special educational needs, to young people who are in education or training up to the age of 25—as compared with 16 now—was seen as a particularly encouraging development by respondents to the inquiry. If services for children and young people with cerebral palsy are to complement each other, the plans should facilitate that by ensuring that services are jointly commissioned and provision is decided in dialogue with parents.

The stipulation that provision in plans is set on the basis of the expected outcomes for the child or young person, as agreed between professionals and parents, has been welcomed. It is believed that if the measures are followed through on, they should create the promised cultural shift that will lead to assessments for special educational provision being based on a continuing assessment of a child’s needs and expected progress, rather than being simply a fight over short-term solutions to long-term issues.

I want to emphasise some particular concerns of parents and other participants in the inquiry. The first regards the local offer, which is hugely important because of its potential to give families access to specialist cerebral palsy services offered by third-sector organisations. However, the challenge is what will be included in the local offer. Let me illustrate that challenge with reference to the Rainbow Centre. The centre has applied to be included in the offer for Hampshire, Portsmouth and Southampton, but councils in other areas served by the centre, such as Wiltshire and Dorset, have said that they will only include the centre if there is space available. That means that parents of children with CP in those areas will not know that the provision is available and will miss out on the support that the centre offers, and therefore on an education that could transform their children’s lives. Given the nature of centres dealing with CP, there will not be one in every county or unitary authority, so it is important that the local offer looks beyond council and area boundaries to ensure that all children with CP are signposted towards the right specialist services for them.

The issue of the local offer speaks to a broader point about the tension between tailoring services to local needs and a postcode lottery that results from a lack of national consistency. I suggest to my hon. Friend the Minister that Ofsted, in its inspection of children’s services, should examine the local offer and how comprehensive it is. Best practice guidelines should be produced for education and health professionals who work with children and young people with cerebral palsy, to accompany the special educational needs and disability code of practice. The guidelines should explain how the lives of children with cerebral palsy can be improved within the framework of the new system. Although there are the best intentions behind the reforms, parents and practitioners told the inquiry that many years of battling with education and health authorities over support for children with cerebral palsy have left them doubtful as to whether the reforms will make a difference.

The negativity about the reforms’ potential is the legacy of an adversarial SEND system in which parents and practitioners have been left battle-weary and sceptical that change can be achieved. There remains the fear that while the reforms could slightly improve the situation for children and young people with cerebral palsy, they will not address the widespread lack of understanding of the needs of those children and young people, which contributes to a systemic antagonism whereby parents have to fight too hard to prove what support their children need.

Perhaps one of the biggest recurring issues that emerged from the inquiry was the striking lack of awareness among health and education professionals, even among those responsible for carrying out assessments for SEN statements, or for making plans about cerebral palsy that establish what support children and young people who have CP require. This results in late diagnosis, missed opportunities for early intervention and a general scepticism from professionals about forms of support that parents often say have transformed their children’s lives.

There is a need for an awareness-raising exercise, so that if cerebral palsy is diagnosed, parents are made aware by professionals of the options available to them immediately, rather than having to search for those options themselves. In addition, parents who spoke to the inquiry said that all too often they themselves were the experts on cerebral palsy, and the professionals they encountered not only provided little help but acted as obstacles to parents and their children, preventing them from accessing the best help available.

There is a particular concern about early intervention and about whether the reforms will do enough to help. The inquiry shows why more needs to be done to support children and young people with cerebral palsy, especially in the “golden years”—post-diagnosis, for those under the age of two—when intervention is at its most effective because of the plasticity in children’s brains at that age. However, this is often also the period when that type of intervention is most absent.

The inquiry found that children are not receiving the specialist invention they need during these golden years because there is not enough specialist educational intervention available for children under the age of two and, where it does exist, health professionals and parents are too often completely unaware of it. Moreover, even when they are aware of it, local authorities’ responsibilities for assessing the needs of those under the age of two are not spelled out very clearly in the SEND code of practice. That means that by the time an assessment is made and support is put in place, there is a risk that the opportunity to intervene in these golden years, and to improve significantly the early intervention services for children with complex needs, such as cerebral palsy, has been missed. More clarity is needed in the SEND code of practice. It is not clear how local authorities are involved in the assessment of children’s needs prior to the check at the age of two. Of course, as I have said, for many children, intervention after the age of two is of reduced effectiveness.

I would be keen to hear from the Minister how the Government intend to encourage local authorities to target early intervention, and how health and education services will be encouraged to work together in early years—for example, by ensuring that the requirement on health professionals to advise parents on not only the health support available to their child but the educational and developmental support that they may be able to access is followed through on.

I have discussed problems to do with the availability and quality of care for children with cerebral palsy in their earlier years, but we should not fool ourselves into thinking that if we tackle these problems, they will be solved. It is clear from my conversations with parents, and from feedback from centres across the country, that far too many children with cerebral palsy can be isolated when they reach secondary school. Primary schools are often well prepared. Staff are able to work with children who have cerebral palsy, primarily because these schools are often laid out on one floor and are therefore very accessible. Children with CP can get around such schools without any issues, and they can take part in all the normal school activities. However, when they get to secondary school, they can often fall through the gap.

By their nature, secondary schools have much larger buildings than primary schools, with multiple floors and large complexes. Children with CP can often struggle to get around them, leaving them isolated from their classmates and often from parts of the curriculum. Children with CP have been unable to take subjects they love because of problems with wheelchair access. Those problems may prevent them from taking part in courses on the first floor of a building that does not offer access through lifts or ramps.

However, the problem runs much deeper than just physical access. Many secondary schools do not have the specialist knowledge to help children with CP to integrate, and that problem is compounded by the nature of CP. During their adolescent years, young people with the condition can physically regress if they are unable to continue the programmes that help them to remap and maintain their neural pathways. Ensuring proper integration between schools—both primary and secondary—and specialist services can make a huge difference. We do not want the advances in independence that are made in early years to be eroded because insufficient thought has gone into the primary and secondary education of a child with CP.

In conclusion, I hope that I have set out where I believe the debate is at regarding support for children with CP, based on my experience with the Rainbow Centre and my participation with the parliamentary inquiry that is supported by Action Cerebral Palsy. As I said, that report will be published next month, and I hope that the Minister will meet my hon. Friend the Member for Blackpool North and Cleveleys and me, as well as representatives of Action Cerebral Palsy, to discuss it and find a way ahead, so that the Government can help to implement its recommendations and we can improve the lives of children with CP and their families.

If I think back on the remarks I have made, I must admit that my views are perhaps coloured by my experience of meeting parents of children with CP. They have often had to fight hard to get the help their children deserve and that can enable their children to lead more independent lives than was perhaps imagined when their condition was first diagnosed. These are difficult battles to fight, so parents welcome the Government’s reforms, which should enable their children to get the early intervention they need. However, because parents are battle-hardened, they are also sceptical. They want an end to the adversarial approach to educating their children; early intervention in practice, and not just in theory; and consistency in the local offer, so that every child with CP has access to specialist education, regardless of who provides it and where they live. These parents have clearly set the bar for success, and it may be high in comparison with what they have experienced, but the Government need to prove to them that these reforms mean that they no longer have to fight for the right education and health support for children with cerebral palsy.

[Mr Philip Hollobone (in the Chair)]

As this is an Adjournment debate nominated by the Backbench Business Committee, we will hear from the hon. Gentleman again at the close of the debate, because he is entitled to two or three minutes in which to wind up; this is one of those occasions when the Minister will not have the last word.

--- Later in debate ---

[Mr Hoban]

It is a surprise and a pleasure to be asked to wind up the debate; I was not quite prepared for that when I came here this morning. The contributions by my hon. Friend the Minister and the hon. Member for Birmingham, Selly Oak (Steve McCabe) are welcome. Given the time we have had available, they extended beyond the normal 10 minutes, which was hugely helpful in exploring some of the issues that children with CP face.

Despite having been involved with the Rainbow Centre for 13 years, I have learned so much from taking part in the inquiry, and it is a real tribute to my hon. Friend the Member for Blackpool North and Cleveleys (Paul Maynard) that he led the process. The inquiry demonstrated some of the complexities and challenges involved in helping children with CP, and that came out of today’s contributions in different ways.

The Minister and the shadow Minister talked about the golden years, and integrating health and education is pivotal. We heard from witnesses about some of the challenges involved in identification. We can help to identify children at a much earlier age, but there are barriers to that, and the more we can do on early identification, the easier it is to make a difference to children’s lives. In terms of the inquiry, we will want to talk with not only my hon. Friend the Minister but the Department of Health about those early years to ensure the right processes are in place.

Two big points came out of the debate. One is about integration, not only of health and education, but of the state and the private sector, or the state and the voluntary sector and charities. How can we maximise the resources that are available? One thing that strikes me is that we are in danger of operating in silos, to the detriment of children with cerebral palsy. There are great specialist services out there that are accessible, particularly in the early years, and a lot of centres are registered with Ofsted, are respected and benefit from Government funding. However, as a child grows up, the services seem almost to be teased apart. It is harder for a child at primary school to have time in their curriculum to go to a specialist centre to continue an educational programme that helps them with their motor skills, and the pressures become greater as children progress through the education system.

The more ways we can find for specialist support and mainstream schools to work together, the greater the advantages for the children and for society as a whole. We therefore need to make sure integration works, and that we see that through as part of the Government’s reforms, and it is clear from listening to the Minister what emphasis he places on the importance of successful integration.

The second point is about accountability. Accountability is important, because it is where the system will stand or fall. I am not often critical of the Government; as the Minister knows, I am a loyal supporter. His intentions are fantastic, and I know how committed he is on this issue, but we need to make sure that his intentions are followed through on the ground, and that local authorities and local health services respond, following not only the letter of the law, but the spirit of the reforms he has introduced. A lot of people will be looking carefully at the framework Ofsted will publish, to see how we can manage local accountability and national consistency. The framework should be a powerful tool to support parents, who, at the moment, feel they are working through an adversarial system.

The implementation of the reforms and the role of Ofsted are vital, but we must do everything we can to ensure proper integration between specialist services, education and health to improve the life chances of children born with cerebral palsy. There is much we need to learn about what causes cerebral palsy and about the best interventions, but I am confident that, by working together, we will improve the quality of children’s lives enormously, which will be a real testament to the success of the Government’s reforms.

[Mr Philip Hollobone (in the Chair)]

I thank all Members who have taken part in this important debate.