Cerebral Palsy - information and support

Cerebral Palsy is the name for a group of lifelong conditions that affect movement and coordination. The cause is a problem with the brain that happens before, during, or soon after birth.

Cerebral Palsy (CP) is the most common of all childhood disabilities, affecting an estimated 30,000 children in the UK. CP occurs when there is an injury to the growing or not yet fully formed brain. Usually, CP injury happens in the parts of the brain that control movements.

People with CP can be affected very differently. Some people may have only very subtle physical issues and other people may be much more affected by being physically disabled. Some people have typical intelligence whilst others have difficulty learning.

It may or may not affect an individual's vision, hearing, or speech. In some cases, you may not even realise someone has cerebral palsy and their disability may be hidden.

Once the injury to the brain has taken place, it does not get worse. Symptoms may change as people grow and their bodies become bigger and heavier.

CP has many causes;

infections caught by mothers during pregnancy
a difficult birth
giving birth early
bleeding or a lack of oxygen to the baby’s brain

There is currently no cure for Cerebral Palsy although people with CP lead full active and independent lives.

Further down this page, we will explain a bit more about Cerebral Palsy and who helps support families and young people who live in Hackney.

Where do children with Cerebral Palsy get assessed and diagnosed?

A diagnosis of CP can happen at different ages depending on the severity of the condition.

It may not be possible to make a definitive diagnosis for several months or years. This is because some symptoms aren't obvious until a child is a few years old. This is why an antenatal (before birth) diagnosis is not given. Most children who have Cerebral Palsy receive a diagnosis by the time they are 2 years old.

Children who had a difficult birth or who are born early (prematurely) and need medical care following birth, will be followed up by paediatricians (children's doctor) at the INDS (Infant Neuro Developmental Service) clinic at Homerton Hospital.

Other children who have symptoms e.g. difficulty with moving their arms, legs, stiffness or delay are referred to Hackney Ark, GP, Health Visitor. They are then seen by Community Paediatricians in the PATCH Clinic at Hackney Ark.

The PATCH Clinic is a developmental clinic aligned to one of 6 locality areas (patches) in Hackney. A diagnosis of Cerebral Palsy can be made either at PATCH or the INDS clinic.

How is my child or young person's progress monitored?

Children with complex needs associated with severe Cerebral Palsy are followed up in PAC (Physical Assessment Clinic) by the Community Paediatricians and members of the multi-disciplinary team.

Children with less severe symptoms will be followed up in the PATCH clinic (under 5 years) or School Age Clinic (over 5 years) or if they are at a Hackney Special School at a school medical appointment.

Educational progress is monitored by the school SENCo. Each school must have an SEND Information Report explaining how pupils with SEND are supported. This must detail how pupils with medical conditions are supported.

Schools can call in other agencies for specialist advice about particular children. All schools have a link Educational Psychologist and Speech and Language Therapist.

Information from and for young people in Hackney...

Children’s Occupational Therapy and Children's Physiotherapy run sessions during the Summer holidays for young people known to their services. Previous projects include making a film The Cerebral People film and a photography exhibition.

This photograph shows young people who selected their best photographs from this project for an exhibition and wrote messages to go with them that they wanted the local community to understand.

Photo of the project tiitle and information flyer "We need to talk". Photo of the exhibition with a selection of work hung in the gallery where the exhibition took place. Young people who took part in the project on the opening night, 3 in wheelchairs, 2 standing behind all and wearing project t-shirts. Final image is og a young person who uses a walking aid standing by the photos they took for the project.

We need to talk CYP images

What support services are there in Hackney?

Orthopaedic Management

There is an agreed orthopaedic pathway for referral from Hackney Ark to the Royal London Hospital. This is to monitor and prevent hip problems. Paediatricians at Hackney Ark request children’s hips be x- rayed and reviewed by orthopaedic doctors at the Royal London. Children are seen once and then a follow-up is arranged depending on the X- ray results and initial assessment.

The doctor at the Royal London will discuss the options to manage spasticity (a condition in which muscles stiffen or tighten, preventing normal fluid movement) and pain. These options may also include Botox.

Vision and Hearing

All children with Cerebral Palsy need vision and hearing checks. Children are referred for these by paediatrician at time of diagnosis. They may then need follow-up depending on initial testing.

Education services

Health Services

Social Care for children and Adults

Are there any support groups for young people and their parent carers?

Family and Parent Support Groups

Children’s Occupational Therapy and Children’s Physiotherapy Service run parents group 1 -2 times a year at the Hackney Ark. The sessions explore different topics and issues for families e.g. what different services do, why we regularly assess your child using outcome measures and treatment options.

CAMHS Disability Service offer a range of parent-carer support and information sessions. CAMHS Disability are part of the CAMHS Alliance which offers a range of support to families and young people.

Groups and support for young people

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Page last modified: 10/10/2023