Paediatric Specialist (also known as Community/Neurodisability) Services including provision for SEN/D
Background
We provide medical assessment and care for children with disabilities and complex or chronic health needs. We also provide assessment for infants and children with complex disorders of development.We are one piece in the large jigsaw of health provision, working withthe other children’s services inGloucestershire which assess and support children. We aim to work together with involved children’s services to bring the best outcomes for children in our care.
We hope it is helpful to explain which children should be referred to this service,and what information it is useful to attach, when making a referral.
The health support for children and young people with Special Educational Need and Disability (SEN/D) is delivered by a network of professionals, with the child and young person’s needs determining which Health Professional, or which Service the child needs at any given time.
Health Services for children are described as:-
1)Universal–this is the support available to all children and young people, with and without SEN or Disabilities, and includes services delivered by ‘Primary Care’ – GPs, Health Visitors, School Nurses (PHN’s).
2)Specialist–Assessment & Diagnosis Services- for children and young people with SEN/D who require a specific assessment or additional short-term health plan, over and above that which is routinely provided by the universal health providers (GP/PHNs).
Examples include Specialist Diagnostic Assessments e.g. for Autism Spectrum Disorder, for the diagnosis of the medical causes of Disability, for the Health investigation of a significant preschool development delay etc.
3)Specialist–Treatment and Review Services- these are the services needed for children and young people with SEN/D who require specialist longer term support – examples include services for chronic health conditions causing disability e.g. services for children with complex physical +/- sensory disabilities with complex health needs. These situations demand theexpertiseofSpecialist Paediatric rather than universal services. An example would be a child with severe physical disability, who has epilepsy, feeding and nutritional needs, sleep problems plus other medical difficulties.
Children with disabilities can have a broad range of needs. Children may access the specialist paediatric service for Assessment and Diagnosis only, if it is established that the health needs are such that they can be supported byuniversal health services, orspecialist therapy services (e.g. Physiotherapy, Occupational therapy, Speech therapy), then it may be that the child is signposted to the most relevant support service following their diagnostic assessment, and therefore discharged from specialist paediatrics.
Childrenwho have more complexand sometimes multipleneeds,will be offered further review and support fromthe SpecialistPaediatric Services.
Paediatric Health Services (GHNHSFT)
Paediatric Health Services delivered by Gloucestershire Hospitals NHS Foundation Trust (GHNHSFT) are divided into Services where children need:-
1)Unscheduled (Acute) Care– These are the acute response services that assess and treat children who are acutely unwell. Children and young people are usually assessed and referred by the universal services (GP, NHS III, Minor Injury Unit). In emergency situations children attend the Emergency Department (ED) in GRH/CGH.
Children and young people are either discharged following assessment and treatment in ED or the Paediatric Assessment Unit (PAU), or admitted to the Ward/Children’s In-Patient ward for treatment. This includes children with disabilities and SEN/D who are acutely unwell.
Babies born who need a higher level of medical care will receive care in the Neonatal Unit.
2)Scheduled Care– These are the wide range of services for which children and young people receive a scheduledoutpatient appointment. The appointments are with Consultant led teams (which includeSpecialty doctors and Specialist Nurses), who assess and support children with a wide range of long term conditions and disabilities. Scheduled Care also includes inpatient and daycase care for patients having a planned procedure or surgery.
Assessment and Diagnosis Services for SEN/D
We offer a child and young people centred service that aims to deliver an efficient (evidence based), diagnostic assessmentfor conditions where the identified need is for a Specialist Paediatric assessment.
These conditions includethe child or infant with:-
- Complex Neurodevelopmental delay with likely SEN/D;
- Ex- Premature infants judged to be ‘High Risk’ of SEN/D;
- Possible social Communication Disorder (Autism Spectrum Disorder);
- Neurodevelopmental conditions with significant impacting on function/educatione.g. ADHD;
- Neurodevelopmental regression;
- New Neurological symptoms – e.g. seizure, tics, ataxia (balance problems);
- Gastro-intestinal symptoms secondary to the SEN/D condition;
- Complex coordination disorder;
- Complex child Safeguarding need (level 3 and 4 GCSB levels of intervention);
- Rheumatological conditions
Access for Assessment service
- Age Criteria for new referral - birth to 16 (end of school year 11).
- Referral by Health professional accompanied by written objective evidence
- The written objective evidenceneeds to explain the nature of the clinical concern or development delay. The referral needs to include information of previous interventionsand services involved (including the aims and outcomes of any previous interventions). Previous investigation results, where relevant,need to accompany the referral.
Children with Complex needs requiring Longer Term Treatment/Review
Treatment, Review and Support Services
We aim to support children/young people, parents and carers in developing appropriate care pathways for their complex health needs. Working collaboratively with other supportive services – we aim to reduce the health consequences of chronic medical conditions and assist the child/young person in realising their potential.
Children who need these levels of review will probably be at ‘My Plan+’ or EH & C stages on the Gloucestershiregraduated pathway of support.
Examples of situations whichrequire medical treatment, review and support includes children with:-
- Complex Neurodisability and other multi-system Disorders. These children need integrated reviewandspecialist medical screening or monitoring;
- Epilepsy;
- Spasticity (high muscle tone);
- Rare Neuromuscular condition;
- Complex genetic or metabolic condition;
- Gastrointestinal symptoms associated with the primary Disability;
- ADHD when requiring medication;
- Sleep Disorders secondary to the Disability, when requiring medication;
- Rheumatological disorders;
- Palliative care needs.
Some children will need health liaison and partnership working with Consultants in specialist centres outside Gloucestershire – commonly Bristol, Oxford, Birmingham Children’s Hospital, and London. This complex health care planning and treatment for children and young people and their families is atthe centre of our service provision.
The Paediatric Teams work on a Locality basis, alongside other involved professionals and agencies.
This is termed multi-professional working.
We try hardto make appointments that are practical for the child and family, including where possible close to where children live and go to school. We hope in this way to minimise some of the impact of illness/the complex condition on the child and parent/carer.
Access for treatment and Review Services
Age Criteria
0-16 (end of school year 11) in mainstream
Children in special schools with certain long-term conditions may receive services until 18
Paediatric Specialist (also known as Community/Neurodisability) Services Page 3
September 2014
[‘Identification of Concern’may arise following sequential assessments from ‘Universal Health Services’ such as Health Visitor screening assessments; or following assessments from specialist health providers such as Speech and Language Therapy (SALT), Occupational Therapy (OT) and Physiotherapy (PT).
The concern may also be identified from secondary care Health Professionals – e.g. Paediatric Consultants in the various different Health Specialty areas. This will also include direct referrals on behalf of infants primarily cared for by NICU/SCBU.
Referrals may also be made from the secondary care Mental Health Service (2gether NHS Trust) – if the child and young people have a need best met by Targeted (Secondary Care) Paediatric Services.
The Paediatric Consultant is in a position to determine which aspect of the child and young people’s care will need ongoing review at SpecialistLevel (examples include medications review, monitoring of nutrition and growth, and health situations which are more complex, and multiple).
Other aspects of the child’s health care will be supported by Universal Health Services – i.e. GP’s, Public Health Nurses.
[The criteria for referral and assessment by Consultant Paediatric/SEN/D trained Paediatric Consultants are found in Document A].]
Paediatric Specialist (also known as Community/Neurodisability) Services Page 5
September 2014