Purpose
This guidance aims to support the development and maintenance of GP learning disability registers. It supersedes ’Improving identification of people with a learning disability: guidance for general practice’, which was published in 2019.
Target audience
This guidance is aimed at GP practices, primary care networks and integrated care boards (ICBs)
Background
What is a learning disability?
The Department of Health and Social Care (DHSC, 2001) describes a learning disability as: “a significantly reduced ability to understand new or complex information, to learn new skills (impaired intelligence), with a reduced ability to cope independently (impaired social functioning), which started before adulthood”.
Key characteristics:
- It is a lifelong condition starting before adulthood.
- It varies in severity: mild, moderate, severe, or profound.
- It affects intellectual and adaptive or social functioning (for example, daily living skills).
A learning disability is not the same as a learning difficulty. A learning difficulty is defined by the National Institute for Health and Care Excellence (NICE) as a “a reduced intellectual ability for a specific form of learning and includes conditions such as dyslexia (reading), dyspraxia (affecting physical co-ordination) and attention deficit hyperactivity disorder (ADHD).” A person with a learning disability may also have one or more learning difficulties.
An individual with cognitive decline that manifests in adulthood (because of, for example brain injury, illness or alcohol or substance misuse) would not meet the criteria for having a learning disability for the purpose of identification on GP patient lists or for the purpose of formal diagnosis.
Health inequalities
People with a learning disability die on average more than 20 years younger than the general population and are more than twice as likely as the general population to die because of conditions that are preventable or treatable (particularly respiratory disease, cardiovascular disease, and cancers).
GP practices should identify people with a learning disability on their GP practice list. This supports better health by reducing the risk of preventable conditions, enabling early diagnosis and treatment, and supporting the effective management of treatable conditions. It will also assist practices in safeguarding people with a learning disability from avoidable harm and meeting their statutory duties to reduce inequalities.
Identification rather than diagnosis
Identifying a patient as having a learning disability by a GP does not constitute a clinical diagnosis of learning disability, nor does it infer eligibility for learning disability services beyond primary care, or eligibility for local authority support under the Care Act, or specialist NHS learning disability services.
Identifying someone with a learning disability on the GP patient list helps GPs identify people who are likely to benefit from health interventions such as an annual health check and immunisations subject to JCVI guidance. Identifying people as early as possible (under the age of 14) will support future planning of services.
Identification is about recognising a potential issue and may include:
- clinical observation
- patient self-reporting
- use of validated screening tools
- structured assessments recommended by NICE
Tools are available from local organisations to support identification (for example the Leeds Inclusion tool).
Purpose of identifying people with a learning disability
There are 4 objectives in identifying a person with a learning disability on GP patient lists:
- to create call or recall lists so patients aged 14 and over can be offered annual health checks
- to identify patients eligible for vaccinations, in line with JCVI guidelines
- to identify people who may need reasonable adjustments, including adding reasonable adjustment digital flag to their patient record
- to understand the size and demographics of the local population across the ICB area, to support planning of the health and care services. The estimated prevalence of learning disability in the general population is 1.8%
Adding people with a learning disability or suspected learning disability to the learning disability register should give them access to proactive and preventative healthcare in primary care and therefore reduce health inequalities and avoidable mortality.
Learning disability SNOMED CT code clusters
People with a learning disability are identified using specific SNOMED CT codes within a patient record. They are grouped into a ‘code cluster’ (sometimes also called a ‘RefSet’ or ‘reference set’). The learning disability register code cluster is known as ‘LD_COD’. It includes conditions and diagnoses that are highly likely to indicate a person has a learning disability.
Code cluster contents are dynamic and are updated regularly to account for new SNOMED CT content. The latest cluster contents can be found in the Primary Care Domain Reference Set Portal.
While the contents of code clusters are clinically assured for payment and management information purposes, they are not clinically assured for call or recall purposes and do not represent an exhaustive list of all patients with a particular condition or who may require particular care.
Identifying patients who may have a learning disability
People with a learning disability can be identified on GP patient lists in several ways.
- A diagnosis or condition where, based on available research, there is a high probability of having a learning disability as a comorbidity. In such cases, patients are automatically identified when the SNOMED code for the diagnosis is inputted into the GP patient record.
- When a patient list is run based on the LD_COD, all patients who have a code linked to the learning disability code cluster will be included.
- There may be instances where patients do not have a learning disability. In these cases, please check the correct code has been applied. If the correct code has been used, manually exclude the patient.
- A specialist assessment and diagnosis by a learning disability specialist.
- Identification of suspected learning disability by a GP.
- If there is a clinical indication the person would benefit from inclusion on the GP learning disability register due to a suspected learning disability, the generic code ‘On learning disability register (finding)’ SNOMED CT code 416075005 can be added to their record to ensure they are included in relevant indicators.
- Resources such as the Leeds inclusion tool can support clinicians to determine whether a patient would benefit from being added to the learning disability register.
- A patient or carer request. Patients or their carers may ask to be added to the GP learning disability register, with additions being made to registers if clinically indicated. Use the generic code ‘On learning disabilities register (finding)’ SNOMED CT code 416075005 when formal diagnostic assessment has not been completed.
The decision to include someone on the GP learning disability register can be made within primary care and does not need to be confirmed by a learning disability specialist. However, this does not mean that a patient will be eligible for input from specialist learning disability services or that they would meet the diagnostic criteria for a learning disability if formally assessed. It means that the person may have a learning disability and would benefit from inclusion on the register.
Being added to the GP learning disability register should not be based solely on factors such as attending a special school, receiving support from the local authority under the Care Act, or accessing specialist NHS learning disability services. These services use different eligibility criteria, which often vary depending on individual needs and local commissioning arrangements.
If a person has a learning disability but is not identified by a code within LD_COD, the generic code ‘On learning disability register (finding)’ SNOMED CT code 416075005 can be added to their record to ensure they are included in relevant indicators.
Communicating with patients and carers
It is important to be sensitive when communicating with patients and carers when a GP decides that someone could benefit from being included in the GP learning disability register.
It may be the first time this has been considered and will require a sensitive conversation. It is also important to ensure that the person (or carer) understands that being added to the register is not the same as receiving a formal diagnosis of a learning disability and that, while the register will support good access to important primary healthcare initiatives, it does not necessarily indicate a referral to or guarantee access to specialist learning disability services.
A referral may prompt discussions with patients and carers, depending on the individual’s care and support needs, about whether they wish to consider a referral to specialist learning disability services for a more formal diagnostic assessment or assessment of their eligibility to receive specialist learning disability services.
Removing patients from the GP learning disability register
Following feedback from GP practices, a code has been added to SNOMED that will enable patients who do not have a learning disability but have a diagnosis coded as part of the LD_COD cluster to be removed from the GP learning disability register.
The new code cluster is ‘LDREM_COD’, and it includes a single code ‘984051000000100 Learning disability excluded (situation)’.
Primary care networks are recommended to establish a policy to support decisions by GPs to add or remove patients from the GP learning disability register. This policy should help GPs make informed clinical decisions and safeguard against patients being erroneously removed from the GP learning disability register.
If a patient asks to be added to or removed from the register, the Mental Capacity Act must be considered and applied. An assessment of capacity must be conducted if there is reason to doubt the patient’s capacity to make this decision. For patients who lack capacity, follow best interests processes to decide whether to add or remove them.
Coding quality
Practices may wish to review their patient lists to check that codes have been used correctly. If a code was added for another reason it may need to be changed.
For example, the code ‘230782004 dysequilibrium syndrome’ has had unexpectedly high use. This is an extremely rare syndrome that includes a co-occurring learning disability. About 50 cases have been reported worldwide. It appears that some practices have used or mapped this SNOMED CT code for the unrelated but similarly named symptom of ‘dysequilibrium’ meaning dizziness/unsteadiness. There are a variety of alternative SNOMED CT codes that could correctly be used to describe the symptom of dysequilibrium.