Recording dementia read codes (WHC/2023/045)

Status:

Action.

Category:

Performance.

Title:

Recording of Dementia Read codes.

Date of expiry / review:

31 December 2026.

Action by:

• Health boards
• GP practices. 

Required by:

Ongoing.

Sender: 

• Dr Anna Kuczynska.
• Senior Medical Officer for Primary Care and Mental Health.
• Welsh Government.

Welsh Government Contacts:

Mental Health and Vulnerable Groups
mentalhealthandvulnerablegroups@gov.wales

To:

• GP practices.
• General Practitioner Committee Wales.
• Royal College of General Practitioners.
• Royal College of Psychiatrists.
• Royal College of Nursing.
• Directors of primary community and mental health.
• Assistant medical directors.
• Mental health general managers.
• Improvement Cymru Public Health Wales.
• Memory clinics.
• British Geriatric Society (Cymru).
• Care of the Elderly Medicine.
• All Wales Senior Nurses Advisory Group.
• Prison health leads.

Dear Colleague,

In February 2022 we issued WHC/2022/007 – Recording of Dementia Read Codes, with a review date of March 2023. This is an extension to this Welsh Health Circular, with a review date of March 2026.

The previous Welsh Health Circular outlined a recommendation following the 2018 Memory Assessment Services Audit to review and re-launch the read codes and provide guidance to all services. The 2018 Memory Assessment Services audit found that the majority of services are recording and sharing read codes with primary care general practice. However, there are some inconsistencies in practice:

• not all services are capturing the dementia read code on all correspondence
• not all services are providing primary care with the dementia read code
• not all services are recording the dementia read codes into a data base
• learning disabilities services were not included in the 2015 read code requirements

Annex 1 sets out the read codes which should be captured by memory assessment and GP / primary care services and recorded on all information shared between services, to the person living with dementia and their carer (if they wish to receive this information), and within the Memory Assessment Service, Learning Disability Memory Assessment Service and primary care databases. It also sets out guidance for Welsh health boards to assist with the recoding of a diagnosis of dementia using the read codes.

Yours sincerely,

Dr Anna Kuczynska,

Senior Medical Officer for Primary Care and Mental Health, Welsh Government.

Recording of dementia read codes

Mental Health and Learning Disabilities Cognitive Health / Dementia Programme

Memory Assessment Service and Primary Care

In 2022 the Welsh Government issued a circular to health boards in Wales instructing memory assessment and primary care services to record a person’s dementia diagnosis against agreed read codes, thus providing accurate information to the person living with dementia and their carers (if they wish to receive the information), other services and for the reporting of national dementia diagnostic rates.

Quarterly updates will be provided to the Dementia National Steering Group, which in turn will provide a bi-annual report to the Dementia Oversight of Implementation and Impact Group (DOIIG), responsible for ensuring compliance to the Dementia Action Plan. Learning disabilities services will capture dementia diagnosis and read codes and follow the same process requirements.

The following read codes are to be captured by memory assessment and GP / primary care services and recorded on all information shared between services, to the person living with dementia and their carer (if they wish to receive this information), and within the MAS, LD MAS and primary care data bases:

• Eu00. Alzheimer's dementia *
• Eu01. Vascular dementia *
• Eu025 Lewy Body dementia
• Eu002 Mixed dementia
• Eu057 Mild cognitive impairment (MCI)
• Eu02z Other dementia (that is fronto-temporal dementia, Parkinson’s disease dementia, alcohol related dementia, and so on)

Please be aware read codes have 5 digits so in 2 proposed codes* a full stop is integral to the code.

It is recognised other dementia read codes are used, such as for rarer types of dementia, please continue to record these on all information shared between services as described above.

All correspondence to statutory services will record the dementia diagnosis and read code.

Guidance for health boards to support the Welsh Government health circular

This guidance is intended for Welsh health boards to assist with the recoding of a diagnosis of dementia using the read codes. The health board is required to disseminate this guidance to all services where assessment and diagnosis of dementia is undertaken for example Neurology, Old
Age Medicine, Mental Health and learning disability services and Primary Care.

Memory assessment services / learning disability memory assessment

When a diagnosis of dementia has been made the identified read code will be used from the 
following list:

• Eu00. Alzheimer's dementia*
• Eu01. Vascular dementia*
• Eu025 Lewy Body dementia
• Eu002 Mixed dementia
• Eu057 Mild cognitive impairment (MCI)
• Eu02z Other dementia (that is fronto-temporal dementia, Parkinson’s disease dementia, alcohol related dementia, and so on)

The diagnosis and code will be written on all correspondence to the person's General Practitioner displayed as follows:

Diagnosis: Lewy Body Dementia
Read Code: Eu025

This will ensure the identified read code can be added to the register that collates dementia diagnosis rates and is maintained by the General Practice. The MAS services will also maintain a database with diagnosis information as it is important all people diagnosed with dementia in the locality are captured. This will require MAS to work in partnership with general practice and may require regular meetings between both partners to review data and data cleanse. It will also offer an opportunity to capture the persons named dementia connector within the database.

Primary Care

General Practice have the responsibility for maintaining a dementia diagnosis register that supports the collection and analysis of the national dementia diagnosis rates.

Each GP practice will receive correspondence regarding a person’s diagnosis of dementia from various services where dementia assessment and diagnosis activity is undertaken. All correspondence will contain the dementia diagnosis and read code, which will then be added to the dementia diagnosis register by the general practice. GP managers will undertake a vital role in ensuring that read code information is captured and shared with partner agencies.

** If correspondence is received regarding a person having a new diagnosis of dementia without a read code the source of the information should be contacted by the general practice to determine the correct read code.

Other services that assess and diagnosis dementia

Such as Neurology, Old Age Medicine, Mental Health and learning disability services, Primary Care

Services that undertake assessment and diagnosis of dementia will provide the assessment and diagnosis information with the read code to the person's general practitioner and local Memory Assessment Service. This will ensure the diagnosis and read code are captured by both Memory Assessment Services and Primary Care and the appropriate post diagnostic support is offered to that person.

This information will include the relevant read code from the following list:

• Eu00. Alzheimer's dementia*
• Eu01. Vascular dementia*
• Eu025 Lewy Body dementia
• Eu002 Mixed dementia
• Eu057 Mild cognitive impairment (MCI)
• Eu02z Other dementia (that is fronto-temporal dementia, Parkinson’s disease dementia, alcohol related dementia, and so on)

For all services:

The diagnosis and read code will be written on all correspondence to and from the person's general practitioner and local Memory Assessment Service displayed as follows:

Diagnosis: Lewy Body Dementia.
Read code: Eu025.

This guidance on the recording of diagnosis information and read codes is for use when a diagnosis is confirmed. If it is not clear that a person has a confirmed diagnosis of dementia contact that person's local Memory Assessment Service to discuss further and where appropriate make arrangements for the necessary assessment.

It is recognised that the use of read codes will discontinue when services adopt SNOMED CT (clinical terminology) as a means for data capture. Patient consultations with GPs are currently captured in systems using the clinical terminology read codes. This is clinical record level patient data. SNOMED CT is designed as a global language for health and care terms and is a structured clinical vocabulary for use in an electronic health record. This guidance will be updated as required in line with the timeline for dementia diagnosis being recorded using SNOMED CT.