Children and young people with learning disabilities

The following services and facilities are available at Great Ormond Street Hospital (GOSH) for children and young people with learning disabilities.  Please let us know whether your child has any additional needs in advance so that we can make preparations.

The term used throughout the NHS is learning disability but we acknowledge that some sectors may refer to Intellectual Disability as an alternative description.

A child with a learning disability finds it more difficult to learn, understand and do things compared to other children of the same age.  When a child is younger than school age, these difficulties are likely to be called a Global Developmental Delay.

Like all children and young people, children with a learning disability will generally continue to progress and learn throughout their childhood – but more slowly. In some rare medical conditions, intellectual progress may be more uncertain. Children with a learning disability are likely to need extra support at school to help them to learn to the best of their ability.

A learning disability may be apparent to parents or professionals before formal assessment has taken place. However, a formal diagnosis of learning disability is made by trained personnel from specialist Paediatric or Neurodevelopmental services, for example a Paediatrician or a Clinical or Educational Psychologist, using standardised assessments that they have been trained to administer.

A learning disability will be diagnosed if a child or young person meets all of the following criteria:

The child:

• Has significant difficulty in ‘intellectual functioning’, such as reasoning, problem solving, abstract thinking, and academic learning or learning from experience compared to the expectations for their age.
• Has significant difficulty with ‘adaptive functioning’. This means that the child will not meet the expected standards of independence and responsibility for his or her age. This might include difficulties in being able to feed or dress themselves, or not being able to manage money independently when they get older. Without ongoing support, the difficulties are likely to affect their activities of daily life, such as being able to communicate with others, participate in social events or gain independence. These difficulties occur in different environments, such as at home, school and during leisure time. 
• These difficulties began during the developmental period. 

The degree of learning disability varies across different individuals, so that some children are relatively mildly affected and others have a more significant delay or disability.

It is important that learning disability is diagnosed as early as possible so that the child can get the right early support and help to enable him or her to learn and progress well and fulfil their optimal and best potential. Speech and language therapy, occupational therapy, physiotherapy and clinical, educational and neuro-psychology and education are important sources of support, guidance and habilitation.

Children with a learning disability can have other developmental difficulties and differences and might be described with multiple diagnoses, such as Autistic Spectrum Disorder or Attention Deficit Hyperactivity Disorder (ADHD). It is important that these difficulties and differences are well understood so that children can get the support that they need day to day.

Children with a learning disability may also have other medical conditions, such as epilepsy or cerebral palsy.

Many of our children and young people have some degree of learning disability and we have been developing the services and facilities available at GOSH. These include:

Our staff will work with you and your child to find the best way of communicating effectively, starting by asking how your child usually communicates at home. We are aware that not every child with learning disabilities uses speech. We would encourage you to bring in any resources that may help us communicate with your child when you visit the hospital, for example ‘communication passport’ or symbols/pictures.  We will aim to use these as well as gesture, sign, photos, symbols and pictures alongside speech where appropriate. As you are the expert in communicating with your child, we may ask for your help to support us to talk to your child and ensure that we have understood them.

We are currently testing out the use of a ‘communication toolkit’ on some of our wards, which contains communication resources for staff to support children who use different methods of communication to be involved in their hospital care and decisions. We hope to be using this ‘toolkit’ across the hospital soon.

If you have concerns about your child’s communication skills, we would encourage you to discuss these with your family doctor (GP) or Hospital Consultant. A referral to your local Speech and Language Therapy Service is usually the most appropriate place to access advice and treatment. Speech and Language Therapists who work within GOSH are here to help children with new communication difficulties that are diagnosed while in hospital and to see children as outpatients who have complex communication needs that cannot be easily managed by local services. Referral by your local Paediatrician or Hospital Consultant is required. Our Speech and Language Therapists work with children and young people with learning disabilities who have co-occurring medical conditions – further information about the service is available on our website.

Services within the Neurodisability team that can also address concerns about communication skills include the Neurodevelopmental Assessment Clinic and the Communication, Learning and Technology Service.

We are trialling the use of an adapted tool to assess pain in children and young people with learning disabilities as traditional tools may not always be suitable. We currently use the Revised FLACC (Face Legs Activity Cry and Consolability) pain assessment tool. If you would like to know about how we assess pain in children and young people, please contact the Pain Control Service Clinical Nurse Specialists on 020 7762 6206 or email pain@gosh.nhs.uk.

Children who have a learning disability are more likely to experience mental health difficulties such as anxiety or low mood. It is sometimes more difficult to detect these difficulties if a child finds it harder to communicate, but it is important that these are not overlooked.

Sometimes children who have a learning disability can show behaviour that is difficult or challenging to manage. This can be caused by many factors and it is important that time is spent to understand why the behaviour is happening, so that adjustments can be made. This can be extremely stressful for parents and carers and so support should be sought from a psychologist or other professional if needed. If your child is a patient at GOSH, there are psychologists who you can speak to about any concerns that you have. There are also mental health services that you can be referred to by your doctor.

There are also likely to be services locally to you that can support children with a learning disability and mental health problems. If you are concerned you can speak to your family doctor (GP) to find out about what support is available.

We have produced a range of Easy Read information sheets using Widgit™ symbols. These cover clinic visits as well as the most common procedures at GOSH. Other sources of information for children and young people with learning disabilities include Easy Health, Widgit Health and Books Beyond Words.

We have a limited number of ‘box beds’ available for children and young people with learning disabilities for whom our traditional hospital beds may not be suitable. If you think that your child would be safer in one of these beds, please let the ward know as soon as possible before admission.

Some children can be seen at GOSH for assessment of their development and learning following referral by your local Paediatrician – further information about the service is available on our website.

Children who have a learning disability have an alert applied to their records – the aim of this is to let staff know in advance that a child has a learning disability so that they can plan reasonable adjustments for the appointment or stay. We will discuss an alert with you before applying it to your child's record.

• Your named nurse, if your child is admitted to a ward at GOSH
• The Learning Disability Team at Great Ormond Street Hospital aims to support people with learning disabilities and their families/carers when coming to the hospital. The learning disability team supports children and young people and their families/carers to ensure that they are involved in the decision making process around the care and treatment that they receive at GOSH. The team: 
  • Dr Kate Oulton- Consultant Nurse for learning disabilities 
  • Amy Radford - Clinical Nurse Specialist in learning disabilities (working days: Monday- Wednesday)
  • Harriet Ostler- Clinical Nurse Specialist in learning disabilities (working day: Thursday)
  • We also have a number of learning disability trained nurses working in clinical areas across the hospital
    You can contact the team on 0207 813 8465 or email Learning.Disability@gosh.nhs.uk
• Neurodisability team – This specialist team can see children for further assessment of development and learning, and communication. Referrals to the team need to be made by your local Paediatrician or therapy team. For further details see our website.
• The Hospital School – Our School team aims to provide personalised, challenging, enjoyable and innovative learning opportunities within the framework of the National Curriculum. Teachers will also ensure home schools are contacted at the earliest opportunity to obtain information to support planning. For further details,please visit their website or call 020 7813 8269
• Child and Adolescent Mental Health Service – The department provides highly specialised assessment and treatment of mental and behaviour disorders in both children and adolescents. Please visit their website or call 020 7829 8679.
• Paediatric Psychology team – The team aims to provide an assessment, treatment and consultation service to children, their families and the professionals involved in the child's care, to help the child and family cope with acute and chronic illness/disability, and prevent associated psychological difficulties. Visit their website or call 020 7829 8896.