Everyone’s journey is unique
Everyone’s journey with cerebral palsy is different and in the early years a child with cerebral palsy can encounter a number of health professionals. They each bring different expertise and can help a child in unique ways. Here are more details on what everyone does, how they can help and when you are likely to meet them if at all.
In this useful guide produced by Scope you can also find useful suggestions to help you prepare for appointments. What? Why? Children in Hospital have also produced a series of videos to help prepare children for any hospital procedures they may need, by explaining and demonstrating what will happen during the procedure.
Paediatricians are doctors specialising in the care of children. You may meet a paediatrician for the first time in hospital if your baby is born prematurely or with problems. Or you may be referred to a Community Paediatrician if your child is not hitting their developmental milestones and your GP or Health Visitor think further investigation is required.
Community Paediatricians specialise in childhood disability. At your first appointment they’ll take a detailed history and draw up a plan on how best to help your child. They will refer your child to other specialist teams for assessment and follow up on progress every 6 or 12 months. They regularly liaise with schools, school nurses and Education Authorities to make sure appropriate support is provided through the school years.
Neurologists are doctors specialising in disorders like cerebral palsy affecting the brain. Neurologists play a key role in the early years as brain tests and scans are conducted to rule out other possible conditions and reach a diagnosis of cerebral palsy.
Orthopaedic surgeons specialise in the surgical treatments for problems in the bones, joints and other muscles. Someone with cerebral palsy may be referred to an orthopaedic surgeon to correct a deformity, reduce pain or to increase mobility though soft tissue surgery, bone surgery or Selective Dorsal Rhizotomy.
The key point of contact between you and the various support services is likely to be your Health Visitor. A health visitor will usually visit you at home for the first time around 10 days after your baby is born, until then you'll be under the care of your local midwives. They are usually attached to your local GP Practice or Surgery and will visit a child in their home. As the child gets older and their needs become more complex, their key worker is likely to be a social worker.
Children with a disability need different kinds of help at different times in their life. Social workers are trained to help families access the help they need. As a first point of contact they can provide practical pointers to services, funding and additional help available through the Local Authority. They may also have budget for providing short breaks, or other respite services.
Physiotherapists specialise in maximising movement, function and potential. They use exercise, manipulation, heat, ultrasound and massage to help improve muscle tone and develop good patterns of movement. A physiotherapist can develop a programme for babies as young as 6 months old. They can also advise on ways to position, carry and hold a child. You can self-refer to a physiotherapist or be referred through your Paediatrician or GP.
Occupational Therapists (OT) help people of all ages carry out everyday activities that are essential for their health and wellbeing. Occupational Therapy might focus on specific goals such as learning to put splints on, standing up to go to the toilet or boiling a kettle and making a hot drink safely. An OT usually works very closely with a physiotherapist, and when children are old enough to go to nursery and school they will ensure a child has the equipment they need to become a successful and confident learner.
Speech and Language Therapist
Speech and Language Therapists can help children with both eating and drinking problems, and communication difficulties. You are usually referred to a therapist through the Community Paediatrician, Health Visitor or GP.
Orthotists assess a patient’s needs then measure, design, fit, adjust and service orthosis (such splints, braces and special footwear). They work with other members of the health team to improve mobility and balance, correct deformity and relieve pain. It is important to have any orthosis re-evaluated every 6 to 12 months to make sure it still fits and remains comfortable.
A child with cerebral palsy may have additional support needs or learning difficulties. As the child nears school age a parent may ask their educational authority to make an assessment of the child’s educational needs. This assessment is likely to be carried out by an Educational Psychology who can help to advise on the best school for the child, as well as highlighting through the co-ordinated Support Plan what additional help and/or equipment might be needed. Enquire are a good first point of contact for any further advice linked to additional support for learning.
Nutritionists / Dietician
Children and adults with CP may find getting the right amount of nutrients a challenge for a number of reasons:
- Frequent infections
- Eating, drinking, swallowing problems
- Need a modified consistency diet (e.g. soft or pureed food)
- Rely on others for feeding
- Poor appetite due to reflux or constipation
- Eating may be very effortful and take a long time
- Sensory difficulties that make feeding difficult. May cause a child to bite down, turn away, refuse or vomit
- Weight problems due to lack of exercise.