Neuro disability Clinical Nurse Specialist
Neuro disability is an umbrella term for conditions associated with impairment involving the nervous system and includes conditions such as cerebral palsy, autism and epilepsy; it is not uncommon for such conditions to co-occur. Children with a neurodisability have a range of impairments but many have complex and continuing need and as a result are frequent users of the health service at all levels, community, primary care inpatient and outpatient settings.
Role of the Neuro disability Clinical Nurse Specialist
Children and Young people are referred to me by the Neuro disability Consultants Paediatricians . I can offer the child/young person and their parents/carers advice and support in understanding and managing their individual condition/needs. Whilst not all children/young people may have definite diagnosis my aim is to ensure that they have access to any reasonable adjustments that will help them maintain an independent and fulfilling life as possible. This may include referrals to other NHS services and liaising with educational settings. I will also, at the request of the Consultant, monitor medication and assist with medication reviews particularly for young people with Attention Deficit hyperactivity disorder(ADHD).
Many children with neurological difficulties have difficulties sleeping. I am qualified to support families who are interested in following a behavioural approach to the sleep difficulties. The initial referral would be via the Paediatrician and an opt in letter will be sent to parents. Charities that help with advice and support regarding sleep issues can be found in the links below.
I will, where possible, see any parent whose child has a Down ’s syndrome (Trisomy 21) with the Consultant at time of diagnosis and offer support at this time. I will also support via the Downs Syndrome Clinic run in conjunction with a Consultant.
For children and young people who will require ongoing health care into adulthood I will help with transition to adult health services via the Nurse Led transition clinic.
Information on relevant health conditions relating to your speciality
My speciality covers any health needs that fall under the neuro-disability umbrella which includes developmental delay with or without diagnosis , Autism , ADHD, Downs Syndrome , Cerebral Palsy
Where I am based
I am based in the Safeguarding Hub at Russells Hall hospital and will often see children/young people and their families in clinic in the Children’s Outpatient Department, some consultations will take place over the telephone or via video call using an Attend Anywhere link sent to a parent’s mobile phone. I can also see children /young people on the Children’s Ward , or in school if requested by the Consultant as part of an assessment.
How will the Neuro disability services young people receive in Children’s Dept change when they move over to the adults services?
I work with young people from around the age of 14 years preparing them for adult life and managing their condition themselves using the Ready Steady Go programme. For young people for whom the Ready Steady Go questionnaires are inappropriate a slightly different process will be followed depending on the young persons and families wants and needs.
If the young person has a severe learning disability there is an option for transitioned to the Adult Learning Disability Services at Ridge Hill Centre if there are elements of care that cannot be managed by the GP and other health services.
We also have a Learning Disability Team at Russells Hall hospital that can provide advice and support for anyone (child or adult) with a learning disability when they attend hospital for any appointments or admissions, ensuring reasonable adjustments are put in place. Any young person transitioned by the Nurse Led Clinic will be offered a 18years+ transition appointment with this service.