Appendix 46 - Decision making, mental capacity act (MCA), Learning Disability Register
Decision making, mental capacity act (MCA)
Making Decisions Post 16
MCA FAQ's
Planning for adulthood
https://www.downs-syndrome.org.uk/wp-content/uploads/2021/04/Planning-for-adulthood.pdf.
https://www.togetherforshortlives.org.uk/resource/transition-adult-services-pathway/
GP Learning Disability Register (LDR)
Everyone who has Down’s Syndrome should be registered on their GP practice (LDR). You can join the register at any age. If the GP practice knows a person has additional needs they can put reasonable adjustments in place to make sure they get the right healthcare when they need it. Registration is not automatic so it is a good idea to ask the receptionist at the GP practice to check if the person is on the LDR. If the person is not on the LDR, the receptionist will ask about their needs. This information will be put on the person’s Summary Care Record (SCR) so all health professionals at the practice know about their needs and how best to support them.
If the person is aged 16 years or older and they have capacity, they must give their consent:
for information about their support needs to be added to their SCR
to which information can be shared and with whom
There is information about making everyday health, financial and welfare decisions post here.
The LDR is NOT the same as the Disability Register held by the Local Authority (Social Services).
List of abbreviations
AAI – Atlanto-Axial Instability
ADL – Activities of Daily Living
AED – Anti-Epileptic Drug
ARC – Antenatal Results and Choices
ASD – Atrial Septal Defect
ASD – Autism Spectrum Disorder
AVSD – Atrio-Ventricular Septal Defect
BGH – Barnet General Hospital
BP – Blood Pressure
CAF – Common Assessment Framework
CAMH – Child and Adolescent Mental Health Service
CAMHS – Child and Adolescent Mental Health Service
CBT – Cognitive Behavioural Therapy
CDC – Child Development Clinic
CDT – Child Development Team
CHD – Congenital Heart Disease
CIT – Combined Integrated Therapies
CTG – Cardiotocography
CVS – Chorionic Villus Sampling
CXR – Chest X-Ray
CYP – Children and Young People
CYPOT - Children and Young People’s Occupational Therapist
DCT – Disabled Children’s Team
DES – Directed Enhanced Review
DLA – Disability Living Allowance
DS – Down Syndrome
DSA – Down’s Syndrome Association
DSMIG – Down Syndrome Medical Interest Group
ECG – Electrocardiogram
Echo – Echocardiogram
EEG – Electroencephalogram
EGH – Edgware General Hospital
EHCP – Education, Health and Care Plan
ENT – Ear, Nose and Throat
EP – Educational Psychologist
EPR – Electronic Patient Record (computer system)
EY SEN advisor – Early Years Special Educational Needs Advisor
FBC – Full Blood Count
FMU – Fetal Medicine Unit
FSH – Follicular Stimulating Hormone
GORD – Gastro-Oesophageal Reflux Disease
GOSH – Great Ormond Street Hospital
HbA1c – glycated Haemoglobin
HI – Hearing Impaired
Hib – Haemophilus Vaccine
HLA – Human Leukocyte Antigen
HPV – Human Papillomavirus
HQ – Head Quarters
HV – Health Visitor
HWT – Handwriting Without Tears
IAG - Information, Advice and Guidance
IAPT – Improving Access to Psychological Therapies
IFT – Infant Feeding Team
IgA – total Immunoglobulin A
LD – Learning Disability
LEG – Leading Edge Group
LDR – Learning Disability Register
MASH – Multi-Agency Safeguarding Hub
MAT – Multi-Agency Team
MCA – Mental Capacity Act
MDT – Multi-Disciplinary Team
Men C- Meningococcal C
ML-DS – Myeloid Leukaemia in Down Syndrome
NGT – Naso-Gastric Tube
NHS –National Hearing Screening
NICE – National Institute for Clinical Excellence
NIPE – Neonatal Infant Physical Exam
NIPT – Non-Invasive Prenatal Testing
NNU – Neonatal Unit
NSPCC – National Society for the Prevention of Cruelty to Children
OME – Otitis Media with Effusion
ORE – Oromotor Exercise
OSA – Obstructive Sleep Apnoea
OT – Occupational Therapist/Therapy
PCHR – Personal Child Health Record
PCV – Pneumococcal Conjugate Vaccine
PDA – Patent Ductus Arteriosus
PE – Physical Exercise
PIP – Personal Independence Payment
PPI - Proton Pump Inhibitor
PPV23 – Pneumococcal Polysaccharide Vaccine
PSG - Polysomnography
PSHE – Personal, Social, Health and Economic education
EY SEND – Pre-School Teaching Team
PVD – Pulmonary Vascular Disease
PWP - Psychological Wellbeing Practitioner
QRS – QRS complex or interval on an ECG
RFH – Royal Free Hospital
RNOH – Royal National Orthopedic Hospital
SAL – Speech and Language
SALT – Speech and Language Therapy/therapist/Team
SCAN – Service for Children and Adolescents with Neuro-developmental difficulties
SCBU – Special Care Baby Unit
SCR – Summary Care Record
SDB – Sleep Disordered Breathing
SEN – Special Educational Needs
SENCO - Special Educational Needs Coordinator
SEND– Special Educational Needs and Disabilities
SENDIASS – Special Educational Needs and Disabilities Information Advice and Support Services
SENIF – Special Educational Needs Inclusion Funding
SLT – Speech and Language Therapist
SOGS – Schedule of Growing Skills
SPA – Single Point of Access
SRE – Sex and Relationship Education
SW – Social Worker
T4 – Thyroxine (thyroid hormone)
TAM – Transient Abnormal Myelopoiesis
TASC – Team for Assessing Social Communication
TFT – Thyroid Function Test
The BIG-DS – Barnet Integrated Groups for preschoolers with Down Syndrome
ToD – Teachers of the Deaf/Teachers of the hearing impaired
TPO – Thyroid Peroxidase auto-antibodies
TSH – Thyroid Stimulating Hormone
TTG – Tissue Transglutaminase antibody
TVI – Teachers of students with Visual Impairments
UCLH – University College London Hospital
USS – Ultrasound
VFF/VFSS – Videofluoroscopy
VI – Visually Impaired
VSD – Ventricular Septal Defect
VZV – Varicella Zoster Virus