Paediatric neuro-disability clinics

This clinic sees children with conditions that affect their development and learning. Often these children have associated medical problems.
Problems seen in the clinic

• Genetic disorders, for example, Down Syndrome, fragile X, Prader Willi, Children with Down syndrome may have congenital heart disease, hearing loss, constipation, feeding issues
• Cerebral palsy: Children with cerebral palsy may have problems with feeding, gastro-oesophageal reflux, vision, hearing, epilepsy, orthopaedic issues
• Autistic spectrum condition
• Children with a learning disability
• Children with complex disability and no overarching diagnosis

Resources:

• Development text books recommended in your course guide (Lecture Notes in Paediatrics, Paediatrics and Child Health, Paediatrics at a Glance, Illustrated Textbook of Paediatrics)
• There is a 1 page summary of different areas of development up to aged two at: Developmental Milestones – Don’t Forget the Bubbles (dontforgetthebubbles.com)
• Down Syndrome – Down Syndrome Medical Interest Group website www.dsmig.org.uk or the Down’s Syndrome Association website has lots of information http://www.downs-syndrome.org.uk/
• Scope – Cerebral Palsy | National Institute of Neurological Disorders and Stroke – https://www.ninds.nih.gov/health-information/disorders/cerebral-palsy
• Autism – National Autistic Society – www.autism.org.uk
• Useful website for parent information and family support – Contact a Family http://www.cafamily.org.uk/
• Learning disability – What Is A Learning Disability? https://www.mencap.org.uk/about-learning-disability/learning-disability-explained
• Prompt for development assessment (taken from a freely available online book “Disabled Village Children”)
• E-learning modules on ‘disability matters’ Disability Matters Hub . You can register for free with your university email address to start using it. Recommended e-learning to do first is ‘reflection matters’ which will help you to make best use of your experience not just during the community week but throughout your medical practice to develop a reflective practice approach. Browse to see which other e-learnings you fancy especially those under the section of ‘understanding disability’. You can keep the certificates from these e-learning session and add to your learning record.
• Please also visit our Trust website page (go to ‘our services’) particularly to understand more about what we offer in terms of therapists support. There is a section on OT, physiotherapy and SLT etc. There are video toolkits which we use for parent education e.g the Speech and Language Toolkit videos for children with speech and language delay: Complex Communication and Autism (ICAN) (leedscommunityhealthcare.nhs.uk). There are also videos on this webpage on supporting children with autism with their sensory differences, feeding, sleeping and toileting.
• Another interesting and fun activity can be learning some basic Makaton signs (an easy sign language that is used with spoken language)- just type in basic Makaton signs on You Tube to come up with some.

Community paediatric clinics

There is a multi-professional clinic called the “Community Paediatric Clinic”, with paediatricians, children’s nurses, dietitians and/or nurse practitioners. There are a variety of combinations of professionals in these clinics, from paediatrician only to paediatrician and ICAN community nurse working in constipation and daytime wetting pathway. Dietitian liaison review may be requested following the appointment.
The types of conditions you will see include:

• Concerns about growth not seen in Growth and Nutrition Clinics
• Chronic constipation
• Gastro-oesophageal reflux or babies with feeding difficulties
• Cow’s milk protein allergy
• Developmental concerns not seen in Paediatric Neurodisability Clinics
• Looked-after-children having health needs assessments
• Obesity
• Nurse-led daytime wetting service

Resources:

Text books recommended in your course guide (Lecture Notes in Paediatrics, Paediatrics and Child Health, Paediatrics at a Glance, Illustrated Textbook of Paediatrics) to read up about the above conditions
NICE guidance on constipation in children and young people
CG99 Constipation in children and young people: diagnosis and management: Full guideline (nice.org.uk)
NICE guidelines for Cow’s Milk Protein Allergy/reflux/obesity – https://cks.nice.org.uk/topics/cows-milk-allergy-in-children/
Gastro-oesophageal reflux disease in children and young people: diagnosis and management https://www.nice.org.uk/guidance/ng1
Obesity in children and young people: prevention and lifestyle weight management programmes – https://www.nice.org.uk/guidance/qs94

Growth and nutrition

This is a multi-professional clinic, with paediatricians and allied health professionals which includes specialist health visitor, dietitian and clinical psychologist.
The service sees young children with significant feeding difficulties including those with sensory-aversive feeding difficulties who are at risk of poor nutrition, and children who are gastrostomy/NG fed and require support with the transition to oral feeding.

Our referral criteria

• Children with significant feeding problems with/without weight faltering, despite having first received appropriate advice from a health professional.
• Children being considered for tube-feeding.
• Children who are fed via naso-gastric tube or gastrostomy, for support with tube weaning.
• At risk of impaired nutrition associated with sensory feeding problems, aversive eating or neophobia that could not be improved despite appropriate health professional advice.
• Children must be under 7 years and without a diagnosis of an autism spectrum condition.

What you could observe whilst in clinic

• Identification of goals with the family
• Paediatric history taking including taking a feeding and 24 hour dietary history
• Observe dietitian consultation and learn about nutrition in children
• Developmental assessment
• Formulation and effective communication with child and family when there may be considerable parental anxiety
• Specific advice around portion size, weaning, strategies for children with selective eating
• Management of common associated medical problems e.g. gastro oesophageal reflux, constipation
• Decision around appropriate blood investigations including nutritional blood tests
• Collaborative working with the family and their support network, including nursery or school
• Basic parenting strategies
• Multidisciplinary working including post-clinic discussion
• Discussion of child protection concerns.

Aim to follow a patient through from pre-clinic discussion, initial measurement and discussion with the clinic nurse, to the paediatric consultation with the MDT, blood investigations and prescribing and post-clinic discussion. Use the opportunity to observe the effects of the child’s difficulties on the child and family. Take note of how many professionals may be involved with one family. Consider the development of each child you see, whatever issue they come with. Please ask questions.
Resources: Website: https://www.infantandtoddlerforum.org
Evidence-based information and practical tools to support professionals and parents around feeding.

Adoption and fostering

This is a clinic where children who are likely to be adopted are seen, or children who are placed in foster care and are having their health reviewed (an IHNA (Initial Health Needs Assessment)) or unaccompanied asylum seekers (UASC) are seen. The vast majority are removed by Social Care, very few babies freely given. They are seen for a general medical examination, assessment of current and past health, social and developmental problems. The whole child is considered including family history, immunisations and risk of blood borne viruses.
This is a holistic assessment as it may be the only overarching assessment of the child before being placed in an alternative, potentially out of area, placement. There is a danger of important information being lost if not recorded appropriately.

• Appointments: Consider whole clinical assessment
• Issues re. child being adopted or in foster care or if UASC consider their journey and health issues
• Parental health also to consider
• Developmental assessment of children
• Growth measuring and plotting.
• Discuss issues after each child if any queries.

Initial health needs assessments

Children who are seen in this clinic may have had many bad experiences in life until they came into care. It may be difficult to hear their stories and it is important that you talk to the doctor if you feel you will need some additional support. We will do our best to ensure you are okay at the end of the clinic.

Who is seen in clinic?

• Children we see in this clinic have been removed from their parents and placed in foster care. They have all experienced significant abuse and neglect to the extent that they cannot live with their parents anymore.
• There is a statutory requirement that children are seen for medical review within 20 days of becoming “looked after”. This is always done by a doctor.
• This is called an initial health needs assessment and like a pre-adoption medical, is a holistic assessment of the child. It will concentrate on the medical and social aspects of the child. Children in care will often have had poor attention to their health and mental wellbeing and will have delayed immunisations and poor dentition for example.
• Children under 5yrs will undergo a review of their health needs every 6 months until a decision has been made as to whether they will return to parents, go to a family member, or be placed for adoption. Ideally, this decision should be made and care proceedings completed in 26 weeks.
• Children over 5yrs will undergo an annual review of their health needs.
• Care-experienced children and young people have many social, emotional ad medical disadvantages that may affect them life-long.
  Unaccompanied asylum seeking children
• Children under 18yrs who have arrived in the UK unaccompanied by their parents are also deemed “looked after” children and will undergo a health needs assessment.
• They are on a care order (Section 20) and many live in supported lodgings or foster care. They have had an age assessment by social care who deem them to be under 18 years.
• These young people have experienced or witnessed atrocities in their own country and also on their journey to the UK. They may have acquired injuries or infectious diseases as they travelled, and many cannot speak English.
• An interpreter is often used.
• During their assessment particular attention is needed to address issues such as vaccinations, screening for infectious diseases (blood borne viruses, parasites, TB), mental health, family tracing and education/English.

At the clinic you will learn about:

• Paediatric history taking and effective communication with child
• Significance of observing and interacting with child
• Developmental assessment (all ages)
• The impact of neglect/abuse/adverse childhood experiences on children and their physical and mental health
• Immunisation and infection screening
• Growth measuring and plotting
• Multidisciplinary and multiagency team working

Pre-reading:

NICE guidance Looked-after children and young people
RCPCH Refugee and asylum-seeking children and young people – guidance for paediatricians
CoramBAAF Practice Note 66. The health of unaccompanied asylum-seeking and other separated children
Springfield Neonatal Clinics
Problems seen: Babies / children exposed to drugs / alcohol in pregnancy are referred in the following ways:

•  Any mother in Leeds who becomes pregnant is referred to the Forward Leeds Springfield Midwives
• Mothers seen by the Forward Leeds Springfield Midwives are notified to the SNF service usually through the pre-birth multiagency meeting minutes (around 26 weeks meeting)
• The SNF service receives the birth notification of any baby born to a substance or alcohol user from the LTHT
• From experienced foster carers who recognise symptoms.
• GPs/HVs may refer young children who were born out of the area and move to Leeds.

Aims of clinic

• To co-ordinate the healthcare of this at risk group of children
• Look for any ongoing symptoms of withdrawal – manage any problems these are causing e.g. feeding problems
• Monitor development as these babies can have ongoing development problems
• Monitor growth and issues re. feeding
• Look for signs of conditions e.g. FAS (Foetal Alcohol Syndrome)/Foetal Alcohol Spectrum Disorder (FASD)
• Ensure that all usual immunisations (and any extras needed children in this group are offered Hepatitis B vaccination) are up to date – opportunistically given
• Check for blood borne virus testing particularly for Hep C positive mothers
• To provide wider support for social issues
• Complete statutory paperwork e.g. Health Needs Assessments, adoption medicals

What you could learn

• Developmental assessment (all ages, especially babies)
• Thinking about safeguarding concerns
• Immunisation schedules
• Problems and risks of exposing babies to drugs / alcohol in utero (short and long term)
• Multidisciplinary and multiagency team working
• Growth measuring and plotting
•  Understanding of neonatal issues.
• Blood Borne Virus screening schedules.
• The availability of wider social support sources for this group of children.

Audiological medicine (doctor led) and audiologist (audiologist-led) clinics

Who is seen in clinic?

• Children who have suspected hearing problems are referred to community audiology by their general practitioner or other professionals, for example, speech and language therapist to have their hearing assessed
• Children who have delayed speech and language development or unclear speech will be referred for a hearing test to exclude a hearing problem
• Appropriate children are referred from the two Universal Hearing Screens if they do not get a clear response on the screen in school or they require a follow up hearing test in the community clinic following diagnostic testing as part of the Newborn Hearing Screening Programme
• Children with identified mild and unilateral sensorineural hearing loss who do not require hearing aids are seen for monitoring of their hearing in case they develop a progression of their hearing loss.

Aims of clinic:

• To identify children with hearing loss
• To quantify this loss
• To attempt to identify whether hearing loss is sensorineural, conductive or mixed
• To develop an appropriate management plan

At the clinic you will learn about:

• What is ‘normal’ hearing
• How we test children’s hearing (see attached sheet)
• Relevant history taking
• Risk factors for hearing loss
• Interpreting audiograms/test results
• Relevant feedback
• Hearing issues in the context of children’s lives (school, communication, family, social etc.)

Pre-reading:

• NICE guidelines on glue ear
• Hearing Screening website

Constipation and daytime wetting

The ICAN Community Nurse working in this service offers support to children and families when the child is experiencing constipation or daytime wetting.

Problem’s seen in clinics:

• Constipation
• Retentive soiling
• Behavioural toileting difficulties associated with constipation
• Behavioural urinary incontinence
• Bladder dysfunction and overactive bladder (OAB)
• Familial and social difficulties/challenges/barriers preventing the child from achieving continence or relief from constipation
• Safeguarding

Aims of the clinic:

• Provide a comprehensive continence assessment
• Plan their treatment and care
• Offer education around the child’s continence difficulties
• Offer education around the use of laxative treatment
• Offer strategies to modify behaviour and attitude towards toileting through lifestyle changes
• Goal setting
• Liaise with other professionals and significant adults (such as School, 0-19 Service, Social Care etc) to ensure the child and family are well supported to achieve their goals
• Consider Safeguarding where appropriate
• Liaise with the Paediatrician prior to their assessment for constipation and ongoing progress
• Establish whether support is required/would be beneficial from the psychology team within the constipation pathway, which now support the continence team
• Consider whether further tests are required to establish underlying cause of constipation
• Discharge back to primary care

Resources:

www.nice.org.uk/guidance/cg99 – NICE Guidance for managing childhood constipation
www.eric.org.uk – ERIC is a children’s charity which provides information for parents and professionals around common bowel and bladder problems
www.bbuk.org.uk – Bowel and Bladder UK is a charity which provides information for anyone with a bowel or bladder problem
www.thepoonurses.uk – resource for parents and professionals around the management of childhood constipation.
Bristol Stool chart – tool used to assess the different types of poo
https://www.compass-uk.org/help-and-support/parents-carers/parents-carers-health/continence/ – Compass offer’s support and information for parents with children who have continence difficulties

Children’s physiotherapy

The Leeds Community Paediatric Physiotherapy service is a city-wide team addressing the needs of children with long term physical disabilities from 0-19 years and is part of the Integrated Children’s Additional Needs (ICAN) Service. We work with children and young people who have neurological or developmental difficulties or a disability which impacts upon their movement and makes their daily participation in activities difficult. We support children and young people in nursery, school or at home.

We work across the city in the Hub bases and other venues to deliver:

• Down Syndrome Therapy advice clinics – These are opt-in clinics run jointly by Physiotherapy and Occupational Therapy to provide assessment and advice to pre-school children with Down syndrome. Parents can choose when they need support regarding their child’s development rather than have routine reviews. They run every 6 weeks at different venues across the city.
• Pre-school assessment clinics – These are assessment and advice clinics for pre-school children new to our service who have been referred from a Paediatrician.
• MMMP (Mild to Moderate Motor problem) pathway – Assessment and advice is provided for school age children who have been referred from a GP or Paediatrician with mild to moderate motor difficulties associated with Developmental Delay, a syndrome or other neurological disorder.
• Physiotherapy Annual assessment and/or CPIP (Cerebral Palsy Integrated Pathway) – These are assessment clinics held at the Hub bases. All children on the physiotherapy caseload have an annual review assessment to discuss goals and concerns with families, review development, range of movement and agree plans for future interventions. Children with a diagnosis of Cerebral Palsy require a formal range of movement assessment following CPIP-UK guidelines. This helps to score the measurements taken and give early indicators of where therapy, surgical or medical intervention may be required to reduce the incidence of hip dislocation and other joint problems.
• Orthotic clinics – These are clinics for children on the physiotherapy caseload who require specialist footwear or splints. They are contracted to a private orthotic company, and Physiotherapy staff work closely with orthotists to provide joint assessment and treatment planning. The clinics run weekly in the three hub bases.
• Nursery/ School or Home Visits – These are appointments to assess, treat, or train education staff or parents with the delivery of a Physiotherapy programme.
• Land-based interventions – These include sessions in therapy gyms to deliver e.g. gait re-education, Constraint Induced Movement Therapy (CIMT) for children with hemiplegia, or specific therapy blocks targeting the skills identified by the child’s goals.
• Aquatic Therapy – This is Physiotherapeutic exercises in a specialist heated pool, we run sessions weekly at Armley Leisure Centre. Children are referred by their Physiotherapist for a ‘Block’ of sessions (usually one 20 minutes session a week for 6 weeks) often following orthopaedic surgery.
• Rebound Therapy – This is Physiotherapy on a Trampoline at various venues across the city. Children are referred by their Physiotherapist for a ‘Block’ of sessions (usually one 20 minute session a week for 6 weeks).

Resources:

See useful information leaflet on children with developmental delay and physiotherapy support at various developmental stages on Trust website: LCH Physiotherapy (leedscommunityhealthcare.nhs.uk)

Children’s occupational therapy

The Leeds Community Children’s Occupational Therapy service is a city-wide team addressing the needs of children with long term health needs from 0 to 19 years and is part of the integrated children’s additional needs (ICAN) Service. We support children with additional needs and disabilities to participate in everyday activities at home, in school and in the community. We use a family centred approach to gather information and set goals around participation in daily activities. These may be around self-care tasks such as dressing or feeding, school-based tasks such as handwriting or general organisation and leisure activities such as bike riding.

We support children and young people in nursery, school or at home. We run various clinics across the city in the Hub bases including:

• MMMP (Mild to moderate motor problem) Goal Setting and DCD (developmental co-ordination disorder) clinics: These are assessment and advice clinics for school age children who have mild to moderate motor difficulties associated with Developmental Delay, a syndrome or other neurological disorder. They may have been referred by GP, Paediatrician, school or parents themselves. The initial appointment is a telephone appointment, children may be offered a face to face follow up session if indicated.
• Complex Developmental Assessments (CDA) – we also see children as part of the multidisciplinary CDA process (see previous sections for further details)

Speech and Language Therapy

See the Trust website to see the range of services offered by speech and language therapists: LCH Speech and Language Therapy (leedscommunityhealthcare.nhs.uk)

Early communication groups

Children who are referred to PND for suspected Autism who have an open Children’s Speech and Language Therapy referral will be considered for the Early Communication Group. These groups are for:

• The child and parents/carers need support using visual strategies, intensive interaction and aided language stimulation.
• The child is referred to PND for suspected Autism (on PND waiting list or have progressed to the CCA assessment wait list).
• The child is pre-school age (or have deferred entry to reception).
• The family are invited to attend three fortnightly sessions.

Complex Development Assessments

These are Multidisciplinary team assessments led by a Paediatrician for children that have a high level of need (these are predominantly children who are 50 percent delayed or more/ or have a life limiting condition) and require a multi professional team approach to manage their needs.
Once a referral has been triaged and accepted by the CDC Team (Paediatrician, Speech and Language Therapist, Occupational Therapist, Physiotherapist, ICAN HV/N) an assessment date is set for the child and family to attend for a Complex Development Assessment within one of the Child Development Centres in the City.

The ICAN HV/N initially meet with the family at home to discuss the process, assess what their concerns are and discuss the child and family’s goals. We aim to work in partnership with the parents and encourage and value their ideas and thoughts when considering goals for their child. In addition, we liaise with other professionals involved in the child’s care e.g. GP, Public Health Integrated Nurse, Nursery, Therapists, Portage, Visually Impaired Team, Deaf and Hearing Impaired Team, Social Worker.

The elements of the CDA Assessment are:

• Triage following clinic appointment with Paediatrician
• Nursing Assessment (Home visit)
• Professionals Meeting
• Therapy Assessment
• Feedback to parents
• Follow up contacts by professionals

Following the assessment, the ICAN Health Visitor or Nurse arrange a post- assessment contact to discuss the Assessment Summary Report with parents which includes the child’s goals. They will also share information re internal and external support – this will include social and financial information and national and local support groups available.

Transition clinics

These are joint clinics with Adult Community Neurology team and Learning Disability Team for children with complex needs and disabilities transitioning into adult care. These happen only twice a year in each Hub so you may not have the opportunity to observe these.
Transition is more a gradual process and the aim is to get children as independent as possible over a period of time. The transition clinic is just one step in the transition process where the child and family get to meet some of the professionals in the adult team and think about future goals and how the adult therapy team, social care and other professionals can facilitate and support those goals.

Resources:

Ready Stead Go- https://www.readysteadygo.net/home.html
Website for local services in Leeds for young people with learning disabilities: Home – Through the Maze (through-the-maze.org.uk)

4 year follow up of preterm children

Children born prematurely are at increased risk of developmental delays and impairment. In Leeds the neonatal team follow up preterm children up to their 2nd birthday.
The ICAN 4 year developmental follow-up service for 4 year old children born preterm is an opportunity for a formal developmental review at 4 years as recommended by NICE guidance Overview | Developmental follow-up of children and young people born preterm | Quality standards | NICE
This is a good opportunity to see developmental assessment and take part in this.
Consider various difficulties/comorbidities that children born prematurely may have such as chronic lung disease, visual impairment due to retinopathy of prematurity and cognitive or developmental impairment and evolving motor disorder i.e. Cerebral palsy.

SILC Observation

This guidance briefly explains the objectives of this experience day and the learning outcomes for you.
All medical students are expected to have DBS check in place to be able to attend their School experience day. Students whose Community paediatric week fall on school holidays will unfortunately miss out on this experience. However, if you are keen to still be able to visit a specialist provision school please get in touch with your rota co-ordinator and we will try our best to see if this can be accommodated in one of the other days during your Paediatric placement.

As part of your Community Paediatrics experience, you would get to spend some time (4-6 hours) in a school with specialist provision or a SILC (Specialist Inclusive learning centres). The objective of this experience is to gain insight into the daily lives of children with complex disabilities. Some of the themes that students are encouraged to draw their reflections from are:

• principles of inclusive education provision in the UK
• understanding how children’s routine environment and activities are adapted for them and people around them provide accessibility and reasonable adjustments
• barriers and enablers of activities of daily living, mobility and communication,
• management of behaviours
• roles and benefits of allied health professionals
• role of teaching staff in supporting children with health needs, neurodiversity and learning disability.

During your time in school, you may be placed in the classrooms or join in with a therapist, teacher or teacher’s assistant delivering a session. It is a good opportunity to be around children and be able to engage and interact with them in their environment.
Learning can happen in any situation – even during lunch time when children are having their meals, perhaps ask a teacher/teaching assistant what a feeding mat is or explain a feeding plan or show how the environment or cutlery etc may have been adapted for some of the children.

GP Practice 1 Day Placements

• You will be in groups of 2-4 students for a full day placement in primary care.
• You will see acute and/ or pre-booked patients in pairs or with a clinician and will have plenty of opportunity to debrief and ask questions.
• There may be a tutorial about common childhood problems or some practice exam-type questions for you to discuss.

Aims:

• Appreciate the breadth of paediatric care in general practice.
• Understand the role of the primary healthcare team in caring for children.
• Make the most of opportunities for developmental assessment.

Children learn through play. Many students have a good idea of child development in infancy but have difficulties with the toddler/pre-school age group who are not always as biddable and may be much more mobile! Use your community week to do the following:

1. Observe how the clinician engages the child via their communication, gesture and play. What aspects of development are being assessed via this? What aspects of development are being assessed opportunistically (for example during the transition from waiting room to consultation room, and while the child is exploring furniture within the consultation room)?
2. How much adult guidance do individual children need to keep involved in an activity? What level of attention control do you expect from a two-year-old, or from a three-year-old? What other factors, apart from age, affect children’s ability to attend to an activity.
3. Observe children’s spontaneous play. Imaginative play e.g. using dolls/teddies in tea parties should be observed from what age? Are any of the older children enjoying role-play? What factors are likely to be affecting children’s ability to play imaginatively?
4. How do you assess language ability? If a child is not able to express language at a level appropriate to her/his age, what factors might be responsible for this?
5. Glue ear is a very common problem in pre-school children and is associated with conductive deafness. How might a hearing loss affect a child’s ability to learn in nursery, and interact with their family?