(See Appendix 43 for Checklists in DS according to age)

All the therapies (physiotherapy, SLT, OT and the dysphagia team) form the Barnet Children’s Integrated Therapies.

How does it work?

Community paediatricians are involved until the young person leaves full-time education; this is age 18 yrs usually in mainstream school but could be 19 years in a special school. Transition plans are made with the GP, who is asked to do their own annual reviews with the family and young person from age 14yrs. (See below). 
Barnet Community Paediatric Service sees children who are registered with a Barnet GP, regardless of the borough of their school or borough of residence.  Children who have a GP in another borough will need to be seen by the community paediatric service that covers that specific borough.

The review at age 5 years, and subsequent annual reviews, are carried out by the community paediatrician. Children attending mainstream schools will be seen either in Edgware community hospital or Chase Farm Hospital, usually in a specialist Down Syndrome Clinic.  There are dedicated clinics, term-time only, at Special schools (Oakleigh, Northway, Mapledown and Oak Lodge) along with the school nurse.  This model of care was set up in 2019 for children with Down Syndrome (DS) to ensure continuity and joined-up care.  Dr Christine Jenkins is lead for children in mainstream school, from reception to school leaving age, and Dr Ella Rachamim is lead for children in special schools with Down Syndrome and preschool children. If care is being transferred, it will be discussed with the family/carer and child, ensuring a smooth transition of care. The team work closely together, with the local Barnet Multidisciplinary and Interagency teams, to ensure holistic joined-up care for each child.

Transition to School and EHCPs (Education Health Care Plans)

Transition to school and EHCPs will be planned and adapted according to each child’s needs. Planning will involve the family, school SENCO (Special Educational Needs Coordinator), school teachers, Early Years SEND Advisory Team and medical and therapy team (if appropriate).  The community paediatrician will be asked to contribute to the EHCP needs assessment, as will your child’s Early Years SEND Advisor. The Early Years SEND Advisor works very closely with the family during this time; visiting different schools, liaising with SENCOs and supporting the transition.

Discussion at Every Medical Appointment:

Parental concerns

Professionals involved and appointments since last review and coming up.

For ALL Including:

• Audiology all children

• Ophthalmology. Optician all children

• Ophthalmology Eye Clinic if appropriate

• Dental care for all. Family dentist +/- Barnet Community Dentist or Specialist Dental service.

• Speech and Language Therapy (SLT)

If appropriate consider for children on an individual basis:

• Cardiology

• Endocrinology

• ENT

• Other specialist medical appointments if appropriate

• Physiotherapy

• Speech and Language therapy for communication

• Occupational Therapy (OT)

• School Nurses

• Weight Management Service (school nurse team – mainstream or special school depending on school)

• Dietician (rf-tr.bcfhdieteticpaeds@nhs.net)

• Advisory Teacher for Hearing/ Vision impairment (Vision: VI.Team@barnet.gov.uk) (Hearing: D&HS.Team@barnet.gov.uk)

• CAMHS if appropriate

• Before Puberty, consider sexual health and menstrual problems

• From year 9 (age 14) discuss transition planning for health

• From year 9 (age 14) inform GP that the young person is now eligible for a Directed Enhanced Service, DES by their GP – this is an enhanced annual review by GPs for all young people with learning disabilities in their practice - see below for detailed information on this. The community paediatrician will notify the GP via letter, at their 13/14 year review, using a specific letter created by our team (See Appendix 32).  The Community paediatrician will continue to do annual reviews IN ADDITION to this annual DES by the GP, until the young adult is formally discharged from paediatric care to adult care (varies between 17-19 years), whereby the GP will continue their annual DES/review throughout adulthood.

If the GP does not offer the Directed Enhanced Service (DES), then the community paediatrician will discuss different options with the family and the GP.

Development:

• Developmental progress – Activity? Classroom learning?

• Communication. Language development. Makaton, signing

• Self-care skills – toileting, feeding, dressing, life skills in older child

• Fine Motor skills

• Gross Motor Skills

• Therapy and Educational input

• Behaviour – including friendships, peer interaction, social communication, any unusual or repetitive behaviours? Any challenging behaviours – and current strategies and plans? If there are any concerns about a dual diagnosis (of Down Syndrome and Autism Spectrum Disorder) discuss with family and school (See Appendix 42).

• Regression? Early regression in Adolescents and Adults with Down Syndrome. (A Systematic Review of Unexplained Early Regression in Adolescents and Adults with Down Syndrome, Madeleine Walpert, Shahid Zaman and Anthony Holland). Discuss with neurology and/or CAMHS/SCAN.  

“In recent years, some adolescents and young adults with DS have been described as having rapid cognitive deterioration. This regression is characterized by a loss of autonomy and daily skills, reduced speech, and psychomotor activity. Clinical onset can be sudden or progressive, and the evolution is quite variable. Isolated cases have been reported in the literature since 2011 with various designations, including “Down syndrome disintegrative disorder“, “New-Onset Autistic Regression”, “Regression, Dementia, and Insomnia”, and “Catatonia”.  The etiology of regression remains unknown. In some cases, medical conditions (sleep apnea, Hashimoto’s disease, depression) or stressful life events (end of secondary education, death of a close relative) were noticed prior to regression.  Increased attention from the medical community regarding regression in young adults with DS would improve diagnosis, evaluation, and treatment.”  Acute Regression in Young People with Down Syndrome - PMC. (See Appendix 42).

Health

• General health focusing on symptoms of disease known to be more common in DS including:

• Congenital heart disease

• Sleep and disturbed sleeping pattern (see Appendix 13)

• Possible Obstructive Sleep Apnoea (OSA) sleep related upper airways obstruction; symptoms include snoring, gasping, restlessness, sweating at night, unusual sleeping posture or persistent mouth-breathing.

• Changes in Bowel habit, constipation, awareness of possible Coeliac disease (which can present atypically).

• Thyroid hormone deficiency: should be picked up with routine annual blood tests prior to physical signs developing (such as lethargy, dry hair and skin, changes in affect eg depression, cognition, growth or weight)

• If thyroid problems, awareness of other associated autoimmune problems eg diabetes, alopecia.

• Nutritional inadequacy due to feeding problems.  This will also be part of their growth assessment.

• Diet

• Growth change

• Exercise

Medical Update

Any recurrent infections or unusual or prolonged infections?

• Any admissions to hospital – check history and treatment needed eg antibiotics? Oxygen? Get an antibiotic and chest history from parent/carer and/or GP if concerns over recurring infections. Do they need prophylactic antibiotics if they have had frequent infections, which can be used throughout the year or just September to April?  Doctor can discuss with hospital paediatrics or refer to paediatrician with respiratory interest to consider. (Appendix 12)

• Feeding (Appendix 3) – aspiration red flags? Is advice being followed e.g. if on thickeners still for clear fluids? Has this been followed at school and staff trained in its use? Could this be a cause for any respiratory infections as above? Do they still need the thickeners – has this been assessed in the last year by the dysphagia team and does it need reassessing?

• Gastro-oesophageal reflux disease (GORD) and medication?  Is further investigation needed if reflux is still symptomatic and continuing? Eg impedance study, or is it improving, so can we trial a period off medication? Can we wean the medication? 

Often reflux and aspiration go hand in hand. Aspiration is well-managed by the dysphagia SLTs and in conjunction with the paediatrician and parents, GORD is always considered and the paediatrician or GP can prescribe a trial of medication, eg with a PPI, to see if symptoms improve.   Questions to ask/consider - is there pain after meals? A distaste in the mouth after food? Dislike of lying flat? Abnormal sleep postures, which could indicate reflux? Remember to ask but it can be hard to elicit a history of discomfort, so have a low suspicion. 

• Dental care – review by dentist every 6 months ideally. Can be referred to a specialist dentist (See Appendix 22) if not seen one before or carry on with their local high street dentist. In special schools they will have dentists visiting school annually to see all the children. Advise on good dental care, supervised tooth brushing, avoiding sugar and between meals snacks etc.

• Advice regarding cervical spine instability/ atlanto-axial instability (AAI) (See Appendix 21): At each clinic attendance ensure parents are aware of the ‘red flags’ for cervical spine Instability and that they should seek immediate medical help if they are present. 

• Musculoskeletal Problems

  • Pes Planus (flat feet); can consider physio, orthoses and footwear

  • Hypotonia and Joint laxity common

  • Problems with feet, spine and hips

  • Scoliosis

  • Inflammatory Arthritis

Involve school nurse (and/or GP/practice nurse) with growth checks, weight management, immunisation catch up. Copy reports to the school nurse, via the school.

Medication

• Review and document medication

• Antibiotics for cardiac conditions are not usually recommended any longer.  It is important for those children who have a cardiac condition or previous surgery, to document if prophylactic antibiotics are recommended by the child’s cardiologist for non-cardiac surgery and dental procedures. (Community paediatrician to verify with consultant cardiologist if needed).

• Allergies Review and Document any allergies.

Immunisations

(see Appendix 12) 

Immunisation history

(School nurse to aid with this review) – advise:

• Annual flu vaccine for child and household members to be offered,

• Maximise immunity by ensuring appropriate vaccines have been given according to childhood schedule and any additional vaccines. 

• Immunisations up to date, in line with UK schedule.

• Signpost to suitable location if any remain outstanding (including BCG). 

• Healthy Child Programme (school age) to include offer of school age HPV vaccinations. 

• Advise the Pneumovax II/PPV23 vaccine in addition (against pneumococcal infection.) If aged 2-5yrs it is a single dose of Pneumovax II. (It must be given no less than 2 months after the final dose of Pneumococcal conjugate vaccine (PCV) used to vaccinate under 2y olds) If aged over 5yrs - it is a single dose of Pneumovax II (aka PPV 23).  Pneumovax II is repeated every 5 years (but it should not be repeated within 5 years). 

• Chickenpox can present atypically and in those children who are immunocompromised, consider VZV vaccine.

• See further advice on immunisations and letter to GP and parents in Appendix 12

Social history:

• Check benefits eg child benefit, tax credit, PIP, carer’s allowance, DLA and rate, carers allowance, housing benefit, universal credit, mobility bus pass when older. There are constant changes - Families can be helped with this eg by the family liaison officer in the school, Disabled children’s service at social care, or local charities like MENCAP in Barnet or Barnet Carers or Childrens’ Centres who often run Welfare/benefit advice drop- ins. (See Appendix 2 for further help and details of organisations able to provide advice).

• Check housing, social circumstances, home adaptations, well-being of other family members living in home, other siblings and ask if social workers are involved.

• Any additional help eg carers? After school clubs? Access to other services like sport, clubs, library.

• Referral to Disabled children’s team (DCT) should be offered.

• Other referrals: if necessary (to consider: a CAF or a MASH referral at any stage (see Appendix 17); a multi-professionals or TAC meeting; school nurse monitoring and support; referral to CAMHS for psychological /behavioural support if required (See Appendix 27).

• Encourage Healthy Diet. See Appendix 34 for healthy snack ideas.

• Encourage Exercise and Activity. Discuss Exercises and Sports undertaken, and any difficulties.

• See Appendix 35 a list of inclusive local clubs and activities.

• For screening prior to participation in competitive sport can be found at http://www.dsmig.org.uk/library/articles/Atlanto%Axial%20-%20British%20Gymnastics.pdf

• DSActive: https://www.bacdis.org.uk/policy/documents/DSActive.pdf

• Special Olympics local group – http://www.specialolympicsgb.org.uk/find-a-club/21

• As appropriate according to Age and Development (See Appendix 36 for information and resources):

• Menarche and menstrual management

• Pubertal development

• Sexual Health, Relationships, sex education, contraception

• Consider keeping safe from abuse

• Options for medication to suppress periods/ contraception (usually prescribed by GP).

• Consider referral to sexual health/ gynaecology services if particular concern

• Self-examination of testes and breasts - teaching carers (in particular checking for testicular cancer in males which is the most common cancer in this age group in Down Syndrome and breast cancer in women).

• Further useful resources on Puberty, Adolescence and Sexual Health (see also Appendix 36):

  • The Down Syndrome Association (DSA) has a useful parent information leaflet, produced in collaboration with the Down Syndrome Medical Interest Group (DSMIG): “Puberty, Adolescence and Sexual Health.” This also has information about menstrual issues, HPV vaccination, contraception, national screening programmes including cervical screening. 

    • https://www.downs-syndrome.org.uk/about-downs-syndrome/health-and-wellbeing/sexual-health/

  • The NSPCC has a useful leaflet on keeping children safe and the PANTS rule:

    • Simple conversations to keep your child safe from abuse

Examination:

• Growth – Measure height and weight carefully. Plot on Down Syndrome chart in notes and in red book (as yet there is no DS chart on EPR).

Plot on BMI charts if the child is on or above the 75th centile for weight.  If underweight or falling in the lower centiles, consider the possibility of an additional pathology, and if under 2nd centile refer to specialist feeding advice and consider supplementary feeding if growth below the lowest centile. 

If children are overweight/obese this needs a thorough assessment and advice, referral to weight management nurses and guidance about diet and physical activity, also consider referral to dietician. Consider checking TFTs if accelerated weight gain, but should in any case be checked annually.

• Cardiac status. Ask about cardiac symptoms. Listen to heart sounds. Ensure cardiac follow up by paediatric cardiologist is in place if appropriate due to previous cardiac history. Arrange assessment by cardiologist with Echocardiogram as teenager, prior to transfer to adult services.

• Neurology – check history and screen for signs of atlanto-axial instability (AAI) or cord compression. Check limbs and spine. See Appendix 21 for red flags, signs, symptoms, information).  X Rays do not have any predictive validity for subsequent acute dislocation/subluxation at the Atlanto-axial joint.  Clinical symptoms, often mild, are currently the most useful predictors of future risk and merit an urgent specialist referral (spinal team at GOSH or RNOH).  Advise  parents  of information from the Down’s Syndrome Association) with warning signs or new symptoms to look out for which could indicate myelopathy or Cervical Spinal Injury (CSI).  · Neck pain  · Abnormal head posture  · Torticollis  · Reduced Neck Movements  · Deterioration of gait and/or frequent falls  · Increasing fatiguability on walking  · Deterioration of Manipulative skills    Other signs of progressive myelopathy  · Increase in muscle weakness  · Loss of sensation  · Onset of incontinence  ·  Alteration in muscle tone  ·  Decreasing co‐ordination  ·  Diminishing kinaesthetic awareness  · Pins and needles. 

• Musculo-skeletal problems eg foot posture, orthotics, scoliosis – check lower limb alignment and foot position when weight bearing e.g. standing, walking and if feet are rolling inwards (valgus ankle) refer to the orthotic department (see Appendix 25).

Check/screen for pain and mobility in joints and limbs – don’t forget to check fingers for any swelling. (Small but increased incidence of arthritis, leukaemia, hip subluxation/dislocation so worth annually asking for symptoms) (see Appendix 25

• ENT – middle ear disease and obstructive sleep apnoea – ensure up to date audiology assessment and report.  Refer for a sleep study and ENT referral for persistent symptoms (60% of individuals with Down Syndrome have sleep related upper airway obstruction).

• Dental care

• Eyes – glasses, squint, cataract, blepharitis, keratoconus, nystagmus – ensure up to date ophthalmology review and report. Ensure follow up arranged with Eye clinic and/or Optician.

• Checking testes and teaching young person (if possible) and carers how to do a testicular examination to check for testicular cancer (see Appendix 36)

• Check breasts in females and teaching young person (if possible) and carers how to do a breast examination to check for breast cancer (see Appendix 36)

• During annual reviews in Key Stage 4 (14-16yrs):  Refer to transition pathways below for further guidance about upcoming transition from children’s to adult services.

Investigations:

• Audiology to be carried out yearly in Key Stage one (5-7yrs) and every 2 years after; more frequently if concerns identified. Screening should be ongoing throughout life, which should be automatic unless the family have repeatedly not brought the child and been discharged. If so, keep referring.

• Ophthalmological (vision and orthoptic) assessment to be carried out yearly in Key Stage one (5-7yrs) and every 2 years after this, as ongoing throughout life. If the child has not had any visual problems an annual vision check by a local optician could be sufficient.

• Thyroid function tests (TFTs) with T4, TSH and TPO (thyroid autoantibodies) every year, more frequently if any suspicion of thyroid disease.  Children with mildly raised TSH or presence of antibodies with normal T4 should be tested more frequently; repeat in 6 months. A specialist opinion may be required; there are paediatric consultants with an endocrine interest in Barnet and at the Royal Free Hospital.  NOTE: if the child is already under the endocrinology team on thyroxine supplements, leave the monitoring of the TFT’s with the endocrine team.  Clinicians need to have a low threshold for testing thyroid function if there is any clinical suspicion at times between biochemical testing, as we know around 10% of the DS school age population have uncompensated hypothyroidism.  

• Reference for TFTs: Thyroid disorder in Children and Young people with Down Syndrome www.dsmig.org.uk

• Weight and height annually and measured on Down Syndrome specific charts.

• Echocardiogram: Post-pubertal teenager, before school leaving age – arrange assessment by paediatric cardiologist and echocardiogram.  An echo can be ordered on EPR. Recommend this should be ordered at or before penultimate review so can see results and act on them prior to finally moving onto adult services.

Include in every report to the GP:

A) Recommended extra vaccinations (See Appendix 12) – annual flu vaccine and the extra pneumococcal vaccine; also discuss chickenpox.  Letters should be distributed around Autumn to parents and GPs to remind them about these vaccinations due for ALL children with Down Syndrome. Recommend that these children are given the first batches of flu vaccine that is made available for the GPs.  Chickenpox can present atypically and in those children who are immunocompromised, consider VZV vaccine.

B) Every review by the community paediatrician, GP and/or paediatric physiotherapist should include asking about symptoms of atlanto-axial instability and documenting findings on that day. Consider completing and updating the BGA screening form (note: it documents examination at that time only).

British gymnastics information pack Atlanto-Axial Instability (See Appendix 21)

C) Thyroid function (See Appendix 20)

Venepuncture at age 6months, 1 year and annually thereafter throughout life - To check T4, TSH and thyroid antibodies. 

Where the T4 is normal and the child is asymptomatic but there is a mildly raised TSH (less than or equal to 10mu/l) or thyroid antibodies are present re-check after 6months. A specialist opinion may be warranted.

Key professionals and further referrals as needed:

(remember too that children with an EHCP have annual multi-agency reviews)

• Involve school nurses e.g. with growth checks, weight management, immunisation catch up (or GP/practice nurse) and cc your reports to the school nurse. Duty Number Barnet: 0800 246 5745 and Email: hcp.4barnet@nhs.net and hcp4b.snteam@nhs.net  (For special schools - special school nursing: clcht.spschnursing.barnet@nhs.net)

• Weight management nurses and referral: Healthy weight in children | Barnet Council  https://www.barnet.gov.uk/sites/default/files/CYP%20weight%20management%20pathway%20Final%20draft.pdf

Review Therapy input:-

• Speech and Language Therapy (SLT); ongoing school based SLT input if mainstream provision according to child’s EHCP.

• Occupational therapy (OT) in line with EHCP.  OT can offer useful assessment at school entry and other times with regard to having tables, chairs and other equipment at suitable height for short stature and accessibility of toilets/changing facilities. Also advice on providing a box to support feet, writing slope, holders for pens and pencils, special cutlery and scissors and other adaptations.  OTs can advise on many aspects of Activities of Daily Living (ADL) support, home and school equipment if necessary and mobilising in school.  Ongoing input to be determined by assessment of need via annual reviews.

• Physiotherapy and/or Orthotics in line with EHCP. Consider referral to physio for assessment if Joint or leg or back pain; for assessment and advice and possible onward referral to orthotics.

• School based programmes sometimes include: group programmes to develop motor skills and activities for daily living (with or without OT intervention), handwriting tools to meet multisensory needs (eg handwriting without tears HWT), PE programme (with or without physiotherapy input). 

Review Education Input

• Annual EHCP review to monitor progress, use of Down Syndrome Education materials, access to ongoing training, involvement in Barnet LEG (Leading Edge Group) for DS. Access to Educational psychologist (EP) for ongoing support, advice and training.  This can include advice on managing behaviour and sharing best practice.  Ensure continued multi-agency planning involving parents. Invite paediatrician and school nurse; share any concerns over behaviour, communication etc, consider dual diagnosis.

  • Access to specialist peripatetic teachers – Specialist Teams – D&HS (Deaf & Hearing Support Team), PD&CN (Physical Disability & Complex Needs Support Team), SSTV (Specialist Teaching Team, Vision) (BELS), Barnet Education and Learning Service, 3rd Floor, 2 Bristol Avenue, Colindale, London NW9 4EW.  D&HS email: D&HS.Team@barnet.gov.uk    PD&CN email: pd.team@barnet.gov.uk   STTV email: VI.Team@barnet.gov.uk  (See Appendix 1 and 31)

Other Services

• Bedwetting service (over 5yr): (see Appendix 29) Check as the service is being re-configured.  Paediatric nocturnal enuresis senior nurse.  The service covers the Barnet areas and children are seen from the age of 5 years up to 18 years, offering clinic appointments for new referrals, as well as regular telephone support.  Paediatric Coordinator, Barnet Community Children’s Nurses Team:-  Barnet – 0208 216 5242, Chase Farm – 0207 794 0500 Ext 54209, Enuresis Tel -  0207 794 0500 Ext 54206, Mobile -  07929790599.  General enuresis email: RF-TR.PaedNocturnalEnuresis@nhs.net  South Barnet Email: RF-TR.PaedNocturnalEnuresis-bh@nhs.net CRITERIA FOR REFERRAL TO NOCTURNAL ENURESIS CLINIC: Must have nocturnal enuresis, be aged five to nineteen years, Resident/GP in the Borough of South Barnet (part NW2, NW4, NW7, part NW9, NW11, N2, N3, N11, part HA8) and all of Enfield. Exclusions: Severe daytime wetting, complex psychological difficulties, Constipation (unless treated) and UTIs, All other postcodes. 

• Barnet Integrated Clinical Services (BICS) (previously known as CAMHS in Schools Team or Children and Young People’s (CYP) Wellbeing Team):  https://www.barnet.gov.uk/children-and-families/support-parents-and-carers/barnet-integrated-clinical-services-bics   Email: BICS@barnet.gov.uk and support line: 020 8359 3130 (Mon to Fri 9-5pm).  (see Appendix 27)

• SCAN (Service for Children and Adolescents with neurodevelopmental needs - a subservice of CAMHS) – run by psychiatrist Dr Janaki Bansal and Dr Mark Carter, Tel: 0208 702 4500, Barnet, Enfield and Haringey Mental Heath Trust, Holly Oak Clinic, Edgware Community Hospital, Burnt Oak Broadway, Edgware, HA8 0AD.  Tel: 020 8702 4500.  Crisis Line out of hours: 0800 151 0023.  Emails: New referrals - beh-tr.camhsreferral@nhs.net and admin email: beh-tr.camhsadmin@nhs.net (see Appendix 27)

• SENDIASS Very useful for guidance around all issues EHCP/High needs funding/DLA etc and host many useful conferences.  Support for parents and carers | Barnet Council

• Relationships/PHSE – leaflets and information from Nottingham special school, written by headteacher David Stewart (see Appendix 36).  Specialist school nurses can also be contacted to advise and support around relationships and also transition work, for those children in mainstream in particular.  In special schools there is a dedicated school nurse who can work alongside family and school staff but ALL schools have an allocated school nurse.   

• LD Nurses (learning disability): In many hospitals there are LD nurses who can help support the child and family if they are coming in for appointments or procedures or an admission.  Schools are also helpful in preparing a child for this too.  Always worth checking with the relevant hospital what is available to support students.

• Integrated Learning Disabilities (LD) Team in Barnet for adults – (Appendix 35) Consultants are Dr Eileen McNamara and Dr Andrew Leggate, consultant LD psychiatrists, the team also have specialist learning disability nurses, speech and language therapists, psychologists, physiotherapists and social workers. There is standardised referral form.  Contact details are: Consultant Psychiatrist, Barnet Learning Disabilities Service, London Borough of Barnet, Adults and Communities, 8th Floor, Barnet House, 1255 High Road, London N20 0EJ.  Tel: 0208 359 6173.  Email: Marie.Theodorou@barnet.gov.uk

Email form back to: BLDSIntegratedDuty@barnet.gov.uk or by secure email to BLDS@barnet.gcsx.gov.uk and attach any documents/reports to help us understand the person’s needs. All referrals are discussed by Team Leaders and you will hear back within 10 working days. If you have not provided sufficient information, the referral form will be returned for more information.