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

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