When does ODSS first become involved?
How often will I need to visit ODSS?
Oxford Down Syndrome Service (the ODSS) is made up of two doctors and a nurse who look after children with Down's Syndrome in Oxfordshire from diagnosis through to their second birthday.
The service includes regular general paediatric medical check ups for babies and toddlers with Down's Syndrome as well as supporting services such as the baby group which supports parents with new babies.
Our first involvement with a family may be pre-natally when we can provide information in conjunction with the pre-natal diagnostic services for parents thought to be at high chance of having a baby with Down's Syndrome.
When does ODSS first become involved?
More usually we first meet families shortly after the birth of their baby who has Down's Syndrome. Down's Syndrome is a condition that is usually recognised very shortly after birth and so makes a sudden impact on parents. Reactions to the disclosure of this diagnosis differ widely depending on variables such as the professional's sensitivity as well as factors in the parents, their extended families and the health of their new baby.
Parents are often distressed by the prospect of facing an unknown, and what seems to them at the time, a frightening period of adjustment. The doctor and/or nurse from ODSS sees the parents and baby as soon as possible after birth, usually within the first week of life. The nurse is available 3 days a week and can visit families at home to support them and help them with any problems they might experience.
How often will I need to visit ODSS?
In the first year, routine appointments to the Oxford Down's Syndrome Service (ODSS) at the John Radcliffe take place when the child is 6 weeks and 6 months old.
General Paediatric Check-ups
Subsequent general paediatric appointments take place at 12 months, 18 months and 24 months. At these appointments developmental assessment and medical examinations are conducted. Children with Down's Syndrome are known to have a higher prevalence than normal of certain health problems and particular attention is paid to these areas.
Referral to Education, Physiotherapy, Speech and Language therapy and Occupational Therapy
Your child will be referred to any services they need, when your Paediatrician thinks it appropriate, for Education, Physiotherapy and Speech and Language Therapy. This is usually done at 6 weeks so that the services can plan their workload.
The Therapists usually contact families by letter once they have received the referral to organise a time they can visit. Most first visits take place between 8 and 10 months of age.
Referrals to the Occupational Therapists are only done if there is a specific need and usually the OT will visit only once.
Speech and Language Therapy
Your local Speech and Language Therapist usually visits the families some time around the time the child is 8 months old in order to help them develop a special communication system using hand signs. This is important in the early years as children with Down's Syndrome have particular difficulty developing speech and language and these skills soon start to lag behind their development in other areas. The therapist and parents draw up a programme of therapy together.
Physiotherapy
Babies will generally see the Senior Paediatric Physiotherapist at the ODSS for first time at around 6/7 months and then every 2-3 months depending on the level of support that is required for an individual. We also aim to see children in their home settings every few months on joint visits with the EYSENITS (see below).
Educational Development
The team has close liason with the Early Years Special Educational Needs Inclusion Teachers (EYSENIT) who advise and work closely with parents of pre-school children with special needs about play and educational needs on an on-going basis until the child reaches school age. The EYSENITs are closely involved in the preparation of reports for the Statement of Special Educational Needs. Referral to Oxfordshire County Council for EYSENIT support is advised as early as possible. We also have close links to Kate Dimbleby, the specialist Advisory Teacher for children with Down's Syndrome.
Social Work
During the first 18 months, parents of new babies with Down's Syndrome are welcome to attend a monthly group facilitated by the Social Worker and Psychiatrist. The aim is to offer the chance to meet other parents for mutual support, to provide and specific topic related information and to give them easy access to professional help if needed. Other psychotherapeutic groups are run from time to time, e.g. mothers' groups and fathers' groups.
Other Associated Clinics And Services
- Hearing and eye tests are first conducted when the child is around 7or 8 months old. These specialist clinics are also run at the John Radcliffe.
- The ODSS maintains close liason with other specialist services at the John Radcliffe such as Cardiology, Gastroenterology, ENT and Paediatric Neurology, Endocrinology and Oncology and Orthopaedics as required by individual childrens' health needs.
- All familes are encouraged to make full use of their local child health services, including dental services, as it is important to build up strong links in the local community.
- Many mothers become pregnant again after having a child with Down's Syndrome and are worried as to whether they may be carrying another child with Down's Syndrome. It is possible to have a test during preganacy to check this, and we are able to advise parents and provide informatuon to support their decision making.
Links With Local GPs
Communication is vital to the effective organisation and co-ordination of services for this group of children who often have many appointments to attend. With parents' permission we copy our correspondence to the child's GP and Community Paediatrician to facilitate this process.
Multi Disciplinary Assessment (MDA)
This is usually a one off assessment of your child which is planned over a week of visits to the Department of Community Paediatrics. Your child will see a variety of specialists during the week including a physical examination. MDA is usually organised to take place when your child is about 3 and a half years old. It can be useful for supporting a Statement of Special Educational Needs.
Discharge from the ODSS
After your child’s 2 year check with ODSS he/she will be transferred to your local Community Paediatrician who will take over his/her care.
How do I contact ODSS?
The Oxford Down Syndrome Service Team consists of Dr Clare Robertson Consultant Paediatrician, and Dr Tara O’Connor.
Both Doctors are contactable via Rowena Roberton, Advanced Nurse Practitioner on 01865 231996/ 07920814131 or by email
The Oxford Down's Syndrome Service is located in the
Department of Community Paediatrics
Lower Ground Floor 1
The Children’s Hospital
John Radcliffe Hospital
Headley Way
Headington
OX3 9DU