The Neurodisability service at Temple Street hospital is composed of five paediatricians and a clinical nurse specialist who specialise in the care of children with difficulties with their development, and disability.
These include general developmental concerns, cerebral palsy, autism spectrum disorders, intellectual disability and complex neurodisability. We also care for a cohort of children with Spina Bifida and Acquired Brain Injury.
After a referral to the service, the child is assessed, and investigations are arranged where appropriate. Where necessary, referral to other healthcare professionals including physiotherapists, occupational therapists, and other clinicians are made to better understand the child’s needs.
We liaise with community services such as Early Intervention teams and School Age Disability teams, as well as many other specialist paediatricians in Temple Street and other hospitals e.g. Paediatric neurologists, Geneticists, Paediatric orthopaedic surgeons etc.
In line with the International Classification of Functioning, Disability and Health (World Health Organisation 2001), the Neurodisability team recognises that functioning and disability are results of the interaction between the health conditions of a child and their environment. The goals of the team are to maximise a child’s activity and participation in their world as well as their quality of life.
The neurodisability team would like to thank Ms Louise Donegan, Medical Social Work at CHI Temple Street for her help and support in putting together the resources for this webpage.
Who we are
Dr Jane Leonard is a Consultant Paediatrician with a special interest in Neurodisability, in particular physical disability. Her early post-graduate training was in Ireland, followed by specialist registrar training in Glasgow where she obtained her certificate of completion of specialist training in Paediatric Neurodisability. She spent two further years on fellowship in the Royal Children’s Hospital in Melbourne working in the Departments of Paediatric Rehabilitation and Developmental Medicine.
Dr Jacqueline McBrien (MB, MSc, MICGP, MRCPI, FFP) is a Consultant paediatrician with special interest in neurodisability. Her undergraduate training was in NUI Galway. She completed training in Galway general practice training scheme before continuing in paediatrics. She completed higher specialist paediatric training in Ireland with the Royal College of Physicians and holds a Masters in Child Health from Cardiff University School of Medicine. She was appointed consultant paediatrician with special interest in community child health in Midlands Regional Hospital in 2007 and appointed to current post in 2017. Her research interests include the epidemiology of Neurodisability including rare diseases.
Dr Louise Baker (MB, Bch, BAO, MRCPI, FRACP, F(Paeds)RCPI) is a Consultant Paediatrician with a special interest in Neurodisability. She graduated from RCSI in 2002 and completed her Basic and Higher Specialist training in Paediatrics in Ireland. She spent two years in Royal Childrens Hospital Melbourne where she did a clinical fellowship in Paediatric Developmental Medicine and Rehabilitation. She was appointed a Consultant in RCH, Melbourne and worked across both services for 4 years before taking up her current position in CHI at Temple St and the Central Remedial Clinic Clontarf in June 2017.
Dr Irwin Gill (MB BCh BAO MSc (Paediatric Neurodisability) MRCPI) is a Consultant Paediatrician with special interest in Neurodisability. He graduated from University College Dublin in 2009 and completed Basic and Higher Specialist Training in Paediatrics with the Royal College of Physicians of Ireland. He completed clinical fellowships in Neurodisability and Rehabilitation in Sydney, Perth and Belfast, and holds an MSc in Paediatric Neurodisability from Sheffield Hallam University. He joined the Neurodisability Team at CHI at Temple Street in 2019
Dr Niamh Lagan (MB BCh BAO MRCPI) is a Consultant Paediatric with a specialist interest in Neurodisability. She graduated from Trinity College Dublin in 2008 and completed her higher specialist training in paediatrics with the Royal College of Physicians in Ireland. She completed post-graduate diploma in Neurodisability through Sheffield Hallam University in 2016. She is currently completing a MD in multiorgan dysfunction in children with Down Syndrome. She joined the Neurodisability team in CHI at Temple St and St Michael’s Intellectual Disability Services in August 2019.
Jennifer Tallon (BSC CNM2) is a Nurse Specialist in Neurodisability. Jennifer completed her undergraduate training with a Degree in Children’s and General Nursing in DCU between 2008 and 2012. She worked as a staff nurse on St Patricks Ward in Temple Street from 2012-2019 caring for children with a range of complex medical needs. She was appointed as CNS with the neurodisability team in December 2019.
How to refer
Your general practitioner or Community Medical Doctor can write a referral letter to the service.
All referrals received are reviewed by a doctor. You will receive an appointment in the post with the details of the name of the consultant who will be seeing your child as well as the day, time and location of your child’s appointment.
Your Child’s Appointment
We aim to make your visit to our hospital as friendly as possible. Most outpatient visits run smoothly. Here are some things you can do to help this happen;
- Explain to your child about their planned hospital visit
- Consider role play and social stories about visiting the hospital or doctor
- Visit the “Coming to Temple Street” where you will find a selection of animated resources to help prepare for your visit: Tara & Ben's Hospital Visit
- It may be useful to bring snacks and books/toys that your child can play with
- Feel free to bring earphones or any sensory toys your child may enjoy
For children with sensory needs a sensory room is available, please notify nurses to see if the room is available for your use.
We make every effort to ensure clinics run to schedule however this is not always possible. We appreciate your patience when delays occur. In addition to delays, there may be other components to your visit that you may not have anticipated, including taking bloods, collecting a urine sample or having x-rays. Your visit may last more than two hours.
Sometimes it may suit better to have your child’s blood tests done on a different day. You can find more information about this and how to book blood tests online by clicking here.
What to bring
- Please bring a copy of any assessment reports or letters other doctors or healthcare professionals may have sent you about your child.
- Reports from physiotherapists, occupational therapists, speech and language therapists, psychologist and schools are very helpful and provide us with lots of information
- Please bring a list (or take a photo of) any medicines and supplements your child takes
Who can come?
- We ask that all children are brought by their main caregiver, usually their parent, and not grandparents or other carers where possible
- We ask detailed questions about a child’s medical history and discuss treatment plans which we can only discuss with the child’s main caregiver
- Space in the clinic is limited and although we like to meet siblings and other family members, it can often be noisy and cramped if too many people come for the visit
- We would recommend bringing a couple of small favourite toys to keep your child entertained while you wait and to also to assist in the developmental assessment.
- Assistance dogs and guide dogs are welcome in the clinic. Other animals are not allowed.
- At present with the current restrictions under Covid-19 only one parent/ caregiver is allowed to attend with the children.
- All adults are required to wear a mask.
- Please see the CHI Temple Street website for up to date advice regarding Covid-19
Where to go
Street parking is limited around the hospital but there are public transport routes and private car parks available. More information is available on the CHI Temple Street website by clicking on the following link: How to get to CHI at Temple Street.
When you arrive you need to find the outpatient department (OPD) which is located opposite the Emergency Department entrance. This is located in the laneway to the right of the main hospital building.
When you reach the outpatient department, take a ticket from the ticket machine and wait until your number is displayed at check in desk. After you have checked in, the clinic nurse will weigh and measure your child and then wait for the doctor to see you. We may be able to arrange for the clinic nurse to have your phone number in advance so that you can move around with your child during this wait time - “go for a walk” or wait in a quieter space.
Autism Spectrum Disorders
Early Intervention and School Age Disability Teams
Support for families
Autism Spectrum Disorders
We meet many children with autism and spend time with them and their families. This is a list of websites which contain useful information and helpful advice. We are grateful to the groups who work tirelessly to provide these resources for families.
Middletown Centre for Autism – All island centre established by the Department of Education to promote excellence in the education of children with an ASD. They provide webinars and parental education courses.
As I Am – Ireland’s national autism charity and advocacy organisation
Autism Speaks - Large US autism advocacy organisation
Often after a new diagnosis of cerebral palsy it can seem as there are many new things to learn. We have found the following websites to be helpful in accessing more information either after a new diagnosis or with more specific questions in an older child.
Cerebral Palsy Parent Info Sheet: Royal Children’s Hospital Melbourne
Hemihelp UK: Advice and support for families with children with hemiplegia
Cerebral Palsy Alliance : Australian network of services for children and adults with CP
Hip Surveillance Guidelines: American Academy for CP and Developmental Medicine
Saliva Control in Children : Royal Children’s Hospital Melbourne
Early Intervention and School Age Disability Teams
The early intervention services are for children ages under 5 years with developmental delay. They must have difficulties in at least two areas of development such as communication, speech and language, motor skills, self-care and independence, learning new tasks, social interaction, and managing their feelings. The school age disability teams take care of children who are aged more than five years.
Services are provided by teams based in the community and which service you attend depends on where you live. To access the services, you need to apply to your local early intervention team (EIT) or School age disability team (SADT). Your child will then be assessed for their suitability to attend the team.
Contact information for your local team can be found by clicking here. It is not necessary to be seen by a Paediatrician before contacting these services. It can be helpful to start the process prior to your appointment in the hospital.
Many Children with ASD or additional needs have sleep problems which can be multifactorial. This can be very stressful for children and their families. Sleep problems such as falling asleep, staying asleep or early morning wakening are common in typically developing children and in children who have ASD..
Firstly, to help your child sleep better it is important to address your child’s sleep habits. When trying to make changes to sleep patterns here are a few ideas to bear in mind.
- Select ideas that work well for your family
- Begin to implement the plan when you have time and energy to see if they will work
- Make small changes initially, then slowly incorporate other changes
- Be patient it can take a number of weeks of persistence to see a change in habits
Some children benefit from using a visual schedule to explain the routine to their children. This involves showing a child a picture of each step involved in the routine. You can start with basic steps and then work up on images as the child learns to understand the process.
A number of strategies can be used to aid sleep in all age’s groups.
Building the Correct Environment
There are many environmental reasons for children not settling to sleep. Have a look at the list and see if you can identify any cause for your child having difficulty settling to sleep.
- Room Temperature: Is the room to hot or too cold? Ideal temperature for sleeping is between 16-20C.
- Bedding: Does your child kick off the blankets overnight and wake up as they are feeling cold? Sleep suits can help prevent this
- Noise: is there any inside or outside noise that could be disturbing there sleep? Children with sensory needs can be particularly sensitive to noise.
- Light: Is the room dark enough? Our bodies naturally produce Melatonin when the room is dark. It is recommended to use black out curtains or blinds if a child has difficulties sleeping.
- An Over Stimulated Bedroom: does your child get out of bed to play with toys in their bedroom? Are they watching tv or playing computer games before bed? If so your child maybe over stimulated by the bedroom environment. We recommend no screen time for 3 hours pre bed time.
- Comfort: Is their bed comfortable? Try lying in it yourself.
- Hunger: could your child be hungry?
- Lack of understanding of day and night: Children with additional needs may need some assistance to learn when it is daytime and night time. The bedroom should be completely dark at night and bright in the morning A Gro clock can assist with this process.
- Lack of Routine: Sleep hygiene will help establish a regular bedtime routine. Your child should have the same routine on a daily basis before bedtime. i.e. have a bath, put on pjs, brush teeth, read a story etc. Bed time and wake up time should be the same time everyday 7 days a week.
Many children with addition needs have not learnt to self sooth themselves. This means that they rely on their parents to soothe them to sleep when they wake up overnight also. Tips to help children self-settle:
- If your child is used to you staying with them until they fall asleep you need to gradually step back to allow them settle alone. The best way to do this is gradually move further away from the bed each night. ( from lying beside them to sitting on the edge of the bed to sitting on the floor or chair beside the bed to gradually putting the chair outside the room. If your child wakes during the night you should repeat the same process of self-soothing as used to settle them to sleep.
- Keep any interactions brief and boring when settling a child to sleep “go to sleep it is night time”. Don’t have a conversation as it will reward them for not going asleep.
- If your child is waking for drinks overnight try to gradually phase out this habit.
Before implementing this strategy it is important that you are sure that your child is not unwell and is safe. It is also important that they have a good bedtime routine established also. The aim is to teach the child to go back asleep alone. It means ignoring the child’s crying but checking on him/her at pre-determined regular intervals. Decide how long you can cope with the child crying. Wait for the appropriate number of minutes e.g. 2 minutes. Go to the child and say in a calm but clear way “bedtime. Go Back asleep”. Then you leave again without any distraction. If the child continues to cry 2 minutes later go back in and repeat the same thing. Continue to do this until the child settles.
Some children experience difficulty in falling asleep because they don’t associate the bedroom with sleep. It is important that your child is only in the bedroom when they are ready to fall asleep so that the child only learns to associate the bedroom with sleep. This may mean delaying your child’s bedtime until they are tired. It is important to keep the delayed bedtime time to the same time every night until the child learns to fall asleep within 15-30minutes. At this point you can gradually aim to step back the bedtime by 15minutes every few nights to an earlier time.
Melatonin is a natural hormone produced in the pineal gland of the brain. Melatonin tells the body when to go asleep and when to stay awake. Your body produces melatonin when it is dark to aid you to go asleep. Some Children with ASD in addition to routine changes require supplemental Melatonin to aid them to sleep better. Melatonin is an oral medication which is taken 30minutes before the intended bedtime. Because it is affected by light it is important that after taking it your child is in a dark low and stimulating room. Melatonin is fast acting and therefore only aids sleep onset. It will not keep your child asleep all night. The strategies of self-soothing and controlled crying can be used to address night-time wakening. Melatonin is not covered on the medical card but it is covered under the hardship scheme. Your pharmacy should be able to assist you apply for that scheme. Your GP will be able to re-issue you a prescription for melatonin.
Additional information for sleep during current restrictions has been provided by St Michael’s House at the following link; https://www.smh.ie/assets/files/pdf/tips_and_ideas_to_support_sleep_during_lockdown.pdf
Supports for Families
Children with Neurodisability Benefits/ Entitlements
If you are the parent/guardian of a child with a Neurodisability you may be able to claim certain benefits and allowances from the Department of Social Protection, Health Service Executive & Revenue Commissioners. This will however depend on your child’s individual needs:
- Medical Card: A medical card gives access to medical services, prescription medicines and hospital care for free (there are differing types of medical card e.g. emergency medical card in certain circumstances/ medical card through Domiciliary Carers Allowance if you qualify for this allowance/ standard general medical card)
- Domiciliary Care Allowance: This is a monthly payment for a child aged under 16 with a severe disability, who requires ongoing care and attention, substantially over and above the care and attention usually required by a child of the same age. It is not means tested.
- Carers Benefit: This is a payment made to insured people who leave the workforce to care for a person(s) in need of full-time care and attention.
- Carers Allowance: This is a payment to people on low incomes who are looking after a person who needs support because of age, disability or illness (including mental illness).
- Disability Persons Parking Permit: This permit is only issued to applicants with a permanent condition or disability that severely restricts their ability to walk.
- Incapacitated Child Tax Credit: This is a tax credit that can be claimed from the Revenue Commissioner. The credit is granted if your child has a permanent physical or mental incapacity. The allowance must be claimed directly from the Revenue Commissioners by completing an application form available of their website.
The application forms above can be sourced through the citizen information website: https://www.citizensinformation.ie/en/
Frequently Asked Questions (FAQs)
I am worried about my child’s development
If you are worried about your child’s development the first person to talk to is your public health nurse or general practitioner. They will listen to your concerns and examine your child. If necessary, they may refer you to your local community medical doctor or to a paediatrician for further assessment. It can be helpful to make a list of any concerns you have prior to your appointment. Try to remember at what age your child learned different skills e.g. sitting up, standing, first word etc.
What will happen at my child’s appointment?
After checking in at reception, you will be directed to the area where the clinic is taking place. You will be met by one of the clinic nurses who will weigh your child and measure their height. You will then be asked to take a seat whilst waiting to be seen by a doctor. At every clinic there are a few different doctors and you may sometimes have to see more than one doctor during your appointment. If necessary, we will request some tests which might be x rays, urine tests or blood tests for your child. These will usually be done after you meet the doctor and before you leave the hospital for the day.
I can’t make the appointment time I have been given for my child
If you are unable to attend the appointment you have been given, please contact ____. As the service is very busy and clinics are booked many months in advance it may not always be possible to reschedule your appointment for a time close to the original date. It is important to give as much notice as possible so we can try to reschedule your appointment without delaying your child’s review.
My child had blood test done, how do I get the results?
The results of all blood tests are seen by the consultant in charge of your child’s care. You will be contacted if there are any urgent concerns or abnormalities on your child’s blood tests. Due to the large number of children we see, it is not possible for parents to be contacted with the results of all normal blood tests. If you want specific results you can contact the secretary who will leave a message with the team to phone you back. These are considered non-urgent queries and it may take some days to hear back as the team are frequently busy with other matters.
The secretary for the Neurodisability service can be contacted through Temple Street Switch 01-8784200.
Please leave a message and Olwyn will direct queries appropriately. A member of the team will contact you in due course. Due to the large numbers of patients attending our service this may take a few days. More urgent queries are answered first.
Your general practitioner or local emergency department is the first place to contact if you have any immediate concerns regarding your child’s health.