Neurodevelopmental and neurodisability

Neurodisability is an umbrella term for conditions associated with impairment involving the nervous system and includes conditions such as cerebral palsy, autism and learning disability.

Many children with neurodisability have complex and continuing needs and are frequent users of health services at all levels; community, primary care inpatient and outpatient settings.

A number of recent reports have highlighted the inequalities and poor standards of care afforded to individuals with learning disabilities in the UK. (Healthcare for all: report of the independent inquiry into access to healthcare for people with learning disabilities. July 2008; Valuing people now – Department of Health 2009; equalities scoping study. Foundation for people with learning disabilities July 2011).

Disability in children and young people is common affecting approximately 7% of children and young people aged 0 – 18 years. Around a third experience two to four impairments and more than 10% experience five or more impairments.

For some children with Neurodisability, the range of associated conditions and individual presentations means that specialist neurodisability expertise is required for accurate assessment and management. In such cases health outcomes are enhanced through referral from local teams to a tertiary specialist paediatric multi-disciplinary neurodisability service.

Early diagnosis and targeted interventions contribute positively to the reduction in late and potentially avoidable disability.

Aims of our service

To provide a high quality, timely consultant led service for children and young people under the age of 19 (or during transition into adulthood) with complex neurodisability
Through the provision of a multi-disciplinary neurodisability service, to optimise health outcomes for children and young people and their families
Work effectively with local child health and education teams to answer referral questions and provide recommendations that are implemented locally where possible
To support the training of professionals in relation to neurodisability within the regional networks and other services, health, education, social etc.
To lead and enable research to establish best practice
To contribute to epidemiological data pertinent to disabled children and young people, including measures of outcomes.

Neurodisability service

Our service is based at the Great North Children’s Hospital with a state of the art Child Development Centre

Paediatric specialist Neurodisability services will be delivered by consultants trained in Neurology and Neurodisability. They work with multidisciplinary teams consisting of;

Paediatric physiotherapists
Paediatric occupational therapists
Paediatric speech and language therapists (communication, social communication, dysphagia, feeding and swallowing)
Dietitians
Paediatric surgeons (e.g. orthopaedics, gastroenterological)
Neurophysiology
Children‘s nurse specialists (children‘s community nurses, learning disability nurse specialists, epilepsy nurse specialists etc.)
Specialist teachers

The multidisciplinary specialist assessment will:

Provide an understanding of children’s developmental difficulties, disabilities and diagnoses and discuss the implications of these with families
Respond to questions raised by parents and local teams
Make recommendations to optimise the management of a child’s needs
Liaise effectively with primary and secondary service
Provide a detailed letter addressing all parts of the assessment and suggested management

Conditions assessed and treated

Posture and movement disorders (including cerebral palsy, dystonia, post head injury) – specific questions regarding diagnosis, prognosis and intervention.
Children with little or no vision and severe visual impairment. We work closely with Ophthalmology in a multidisciplinary clinic
Dysphagia – assessing and making recommendations regarding severe and specific difficulties with eating and drinking.
Learning Disability – this is usually evident from childhood and in many cases the cause of the learning disability may not be clear. In other cases, genetics, chromosomal abnormalities or environmental factors may be the cause.
The NHS England funded Complex Neurodevelopmental Disorders Service (CNDS) is based at Northumberland Tyne and Wear NHS Foundation Trust. One of our consultant’s works as part of that team and Children who require second opinions regarding the diagnosis and management of Autism Spectrum Disorders should be referred to CNDS.

Clinics

The Great North Children’s Hospital Tertiary Neurodisability Service offers a number of services and clinics. Your local health professionals will explain which clinic your child will attend. These include: