1. Health Issues and Specific Needs of People with Complex Needs/Challenging Behaviour

2. Rett Syndrome A neurological disorder A neurological disorder Due to a genetic defect Due to a genetic defect Affects only females Affects only females

3. Rett Syndrome Low muscle tone Recurrent chest infections Joint contractures Poor balance Constipation Chewing/swallowing difficulties Profound learning disability Mood swings Sleep disturbance Reflux Repetitive hand movements Breath holding Repetitive breathing Epilepsy Vacant spells Curvature of spine Crying and screaming

4. Cornelia de Lange Syndrome Cornelia de Lange syndrome is a developmental disorder that affects many parts of the body. The features of this disorder vary widely among affected individuals and range from relatively mild to severe. Cornelia de Lange syndrome is a developmental disorder that affects many parts of the body. The features of this disorder vary widely among affected individuals and range from relatively mild to severe.

5. Cornelia De Lange Syndrome Gastro oesophageal reflux disease GERD Limb abnormalities Cardiac conditions Autistic features Rigidity and inflexibility to change Hip dysplasia Learning disability Blepharitis Hearing difficulties Communication difficulties Cleft palate Self –injurious behaviour Mental health problems

6. Who May Be Involved in Support General PractitionerNeurologist General PractitionerNeurologist PodiatryGastroenterology PodiatryGastroenterology Continence servicesSleep clinic Continence servicesSleep clinic DieticianEndocrinology DieticianEndocrinology PhysiotherapyCardiology PhysiotherapyCardiology Occupational therapyPain clinic Occupational therapyPain clinic Speech and Language therapistENT Speech and Language therapistENT Community nurseRespite Services Community nurseRespite Services District nurseSocial Workers District nurseSocial Workers PharmacistEquipment services PharmacistEquipment services OpticiansSeeAbility OpticiansSeeAbility

7. Health Issues and Specific Needs Both people with learning disabilities and people with mental health problems experience ‘diagnostic overshadowing’: that is, reports of physical ill health being viewed as part of the mental health problem or learning disability, and so not investigated or treated. If problems are missed, people experience ill health and its attendant risks unnecessarily Both people with learning disabilities and people with mental health problems experience ‘diagnostic overshadowing’: that is, reports of physical ill health being viewed as part of the mental health problem or learning disability, and so not investigated or treated. If problems are missed, people experience ill health and its attendant risks unnecessarily