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This page provides information about drug stigma including how you can help tackle it, resources, further reading and learning.

The information on this website may affect some readers. Please take care when reading. If you feel affected by what you have read, support is available.

NHSGGC Alcohol and Drugs Health Improvement

Mental Health Improvement – NHSGGC

If you, or someone you know are in distress and need an immediate response call the emergency services on 999 or NHS24 on 111.

What is Drug Stigma?

People who use drugs, people in recovery from drug use, families and communities can experience stigma.

Stigma is the social process of devaluing a person beginning with marking or labelling someone’s differences then attributing negative values to those differences. Stigma is closely linked to prejudice, stereotyping and discrimination. Stigma intersects with other ways people are disempowered and marginalised (ethnicity, gender and sexual identity among others) often increasing risk and harm.

Why should we focus on tackling Drug Stigma?

Tackling drug stigma is a national priority and it is recognised in the Preventing Harm, Promoting Recovery: Scotland’s Alcohol & Drugs Strategic Plan 2026 – 2035 that it continues to be a barrier to accessing help and support which is the biggest protective factor for reducing harm, drug overdose and death.

Tackling stigma and understanding how it connects to other ways people are disadvantaged, is vital to addressing drug related harm, including deaths.

Tackling drug stigma at all levels is essential to fostering an inclusive and supportive environment for people who use drugs and helps people feel a greater connection to society, more included and more likely to access treatment and support for recovery.

How can you get involved?

Recognising stigma is the first step to tackling it. When you witness stigmatising behaviour, you have a choice about the action you take. Taking action shows that stigmatising behaviour is not acceptable. We don’t all need to be experts, but we all have a role in tackling drug stigma. Understanding stigma and approaching interactions with kindness and compassion is the key.

Greater Glasgow and Clyde (GGC) Drug Stigma Action Group

The GGC Drug Stigma Action Group is a multi-agency partnership, established in 2023, bringing together statutory and third sector organisations to deliver a coordinated approach to tackling drug related stigma across Greater Glasgow and Clyde. Group membership includes:

  • East Dunbartonshire Alcohol and Drug Recovery Services
  • East Dunbartonshire Alcohol and Drug Partnership
  • Family Addiction Support Service
  • Glasgow Alcohol and Drug Partnership
  • Glasgow City Alcohol and Drug Recovery Services
  • Glasgow City Health Improvement Team
  • Inverclyde Alcohol and Drug Partnership
  • NHSGGC Alcohol and Drug Health Improvement Team
  • NHSGGC Prison Health Improvement Team
  • Police Scotland
  • Renfrewshire Alcohol and Drug Partnership
  • Scottish Drugs Forum
  • Scottish Families Affected by Alcohol and Drugs
  • Scottish Prison Service
  • Scottish Recovery Consortium
  • Simon Community Scotland
  • West Dunbartonshire Alcohol and Drug Partnership
  • With You

The group works alongside local Alcohol and Drug Partnerships (ADPs) and has links to the National Stigma Action Plan. Its work is guided by people with lived and living experience, strengthening collective action to reduce drug stigma, promote social inclusion and social justice for people who are affected by drugs.

If you are interested in joining the GGC Drug Stigma Action Group please contact ggc.mhead@nhs.scot*.

*Please note that this is a generic admin inbox and not monitored immediately. If you, or someone you know are in distress and need an immediate response call the emergency services on 999 or NHS24 on 111.

‘Tackling Drug Stigma is Everyone’s Business’ Toolkit

The Drug Stigma Toolkit has been designed by the GGC Drug Stigma Action Group as a cascading and capacity building resource that aims to support partners, groups and organisations to tackle drug stigma.

Everyone who uses the toolkit is encouraged to reflect on their own attitudes and language and use this resource to start meaningful conversations within teams, services, across communities and to tackle drug stigma wherever it is encountered. By taking action together, we can help create a more compassionate and supportive response to drug harm.

Licence Information: 

Copyright © NHS Greater Glasgow and Clyde 2026

Tackling Drug Stigma is Everyone’s Business Toolkit © 2026 by NHSGGC is licensed under CC BY-NC-ND 4.0. To view a copy of this license, visit https://creativecommons.org/licenses/by-nc-nd/4.0/.

Toolkit Evaluation

The evaluation questions will help identify who is using the “Tackling Drug Stigma is Everyone’s Business” toolkit and in what settings it is being used. This will help us assess its reach, highlight any gaps, and identify which groups or settings may benefit from additional support or engagement. By collecting this feedback, we can continue to learn, improve the resources, and ensure the toolkit remains relevant, accessible, and effective in tackling drug stigma.  

“Tackling Drug Stigma is Everyone’s Business” Toolkit Evaluation

Thank you for taking the time to share your views. 

Evaluation responses are reviewed periodically at set points throughout the year. If you have any additional feedback on the toolkit or wish to discuss anything further, please contact ggc.mhead@nhs.scot*.

*Please note that this is a generic admin inbox and not monitored immediately. If you, or someone you know are in distress and need an immediate response call the emergency services on 999 or NHS24 on 111. 

Framing Document

“Tackling Drug Stigma is Everyone’s Business” Framing Document.

This resource has been developed as a tool to:

  • Support staff across all sectors to frame conversations about drugs and stigma
  • Support staff to reflect on their own practice, knowledge and attitudes
  • Provide practical tools to manage difficult conversations and challenge stigma
  • Provide education and raise public awareness of the impact of drug stigma
Workshop

The workshop is not training but is designed to raise awareness of drug stigma, the impact it can have, and what action can be taken to tackle this.  

The workshop can be delivered by anyone who has an interest in tackling drug stigma. No prior experience or qualifications are required to deliver the workshop, although facilitators are encouraged to review the “Tackling Drug Stigma Is Everyone’s Business” Framing Document before delivery.

The workshop is best delivered in person but can be delivered online, if required.  For those who are looking to deliver the workshop online, using a virtual learning space such as Microsoft Teams or Zoom, please ensure you follow your own organisational guidance for online delivery.

Films

The films below have been created by people with lived and living experience across Greater Glasgow and Clyde, sharing personal perspectives on drug stigma and its impact on individuals affected by drugs.

All language and views expressed within the videos are participants own views.

‘Stigma Kills’ – This film shares how drug stigma affects both men and women, explores its impact, and highlights actions that can tackle it. 

‘Stigma is a Barrier to Good Health and Quality of Life’ – This film shares how drug stigma affects women, explores its impact on women and highlights actions that can tackle it.  

‘Everyone Knows Someone’ – This film shares how drug stigma affects families when a loved one uses drugs, the impact on their lives, and highlights actions that can tackle it. 

 ‘It’s Everyone’s Business to Tackle Stigma’ – This film highlights why tackling drug stigma is essential to support people affected by drugs to access services, including actions that can tackle drug stigma in practice. 

‘Words Matter’ – This film shares how drug stigma can affect people living in prison, explores its impact and highlights actions that can tac

Conversation Cards

The Conversation Cards have been designed as a tool encourage conversations about drug stigma, challenge assumptions and reflect in a safe and respectful way.

Prior to using the conversation cards, you are encouraged to review the “Tackling Drug Stigma Is Everyone’s Business” Framing Document.

Each Conversation Card links to the Framing Document, where you can explore more information to help inform your discussions – Drug Stigma Conversation Cards.

Communication Pack

Thank you for supporting the ‘Tackling Drug Stigma Is Everyone’s Business’ Toolkit. Please use our communications pack, social media assets and suggested posts to spread the word across your channels.

Drug Stigma Communication Pack

Poster

Social Media Asset 1

Social Media Asset 2

Social Media Asset 3

Social Media Asset 4

Social Media Asset 5

Social Media Asset 6

Social Media Asset 7

Social Media Asset 8

Advocacy Services

An independent advocacy service/advocate can:

  • Listen to you
  • Find information to help you make decisions
  • Help you say what you think about your health care or treatment
  • Help you understand the care and support process
  • Challenge decisions about your care and support if you do not agree with them
  • Stand up for your rights
  • Write letters for you and attend meetings/appointments with you

If you or someone you know is affected by alcohol or drugs you can access independent advocacy in your local area:

Advocacy Guide

Further Learning

Access further learning on drugs and how to tackle drug stigma.

Further Reading

We have gathered a range of papers which will provide you with helpful background reading into drug stigma.

Preventing Harm, Promoting Recovery: Scotland’s Alcohol & Drugs Strategic Plan 2026 – 2035: The Alcohol & Drugs Strategic Plan sets out the Scottish Government and COSLA’s long-term approach to addressing alcohol and drug harms.

Charter of Rights for People Affected by Substance Use in Scotland | WithYou: In December 2024 The National Collaborative published a Charter of Rights for People Affected by Substance Use contributing to Scotland’s National Mission to reduce deaths and improve the lives of those impacted by substances. 

National Mission on Drug Deaths: The aim of the National Mission is to reduce drug deaths and improve the lives of those impacted by drugs. This document shows how this will be done.

National Stigma Action Plan: Cross government response to the Drug Deaths Taskforce report, Changing Lives. It contains a cross government action plan, response to Taskforce recommendations and a stigma action plan.

A Strategy to Address the Stigmatisation of People and Communities Affected by Drug Use: The aim of this strategy is to lead a more informed and compassionate approach across society toward people with a drug problem, lived experience of drug use and their families. 

Intersectionality

We acknowledge that stigma does not exist in isolation. There are many overlapping factors that influence a person’s individual experience of stigma.    

These resources provide further guidance on how best to frame our language and communication to tackle stigma when discussing these topics.  

How To Talk About Alcohol – Framing recommendations to deepen understanding of harm and build support for action.

Talking About Poverty – A framing toolkit to challenge and change the story about we tell about poverty.

Talking About Community Justice – A framing toolkit that aims to transform the current public narrative and perceptions around community justice 

End Mental Health Discrimination – See Me is Scotland’s national programme to end mental health stigma and discrimination.

National Trauma Transformation Programme – This website provides access to evidence-based training, tools and guidance to support trauma-informed and responsive systems, organisations and workforces in Scotland

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Patient Pathway Leaflets

Animations

Further Information

Find out more about the Interface Division here

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Current resources available to download

Patient Journey Materials for Print

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NHS Greater Glasgow and Clyde is moving to a new digital dental charting system. The system, called SALUD, is being introduced across Glasgow Dental Hospital and School.

This will replace the current paper-based dental charting and clinical documentation.

Why are we making this change?

SALUD will:

  • Improve patient safety and record accuracy
  • Provide clear, structured digital documentation
  • Reduce reliance on paper records
  • Support the move towards a fully integrated electronic patient record (EPR)

What does this mean for you?

Clinical documentation will move from paper to digital, and workflows may change slightly depending on your role/specialty.

Full training will be provided ahead of go‑live, with support available during and after implementation.

When is this happening?

Dates are still being finalised. Current timelines are as follows:

  • Training planned for August / September
  • Go‑live in September / October

How will I be supported?

  • Role‑based training sessions
  • Quick reference guides and resources
  • Superusers / on‑site support at go‑live
  • Ongoing support via Digital Services

Where can I find more information?

Check out our Frequently Asked Questions below, and more resources and training opportunities are coming soon.

What should I do now?

Nothing at this stage – just be aware that the change is coming.

You will receive training information, further updates and details of how to prepare over the coming months.

Frequently Asked Questions

What is SALUD?

SALUD is a digital dental charting system that allows clinicians to record patient information electronically, replacing paper-based records.

Why are we introducing SALUD?

SALUD will improve:

  • Efficiency in accessing and sharing patient information
  • Patient safety and accuracy of records
  • Consistency of clinical documentation
Is TrakCare being replaced?

No.

  • SALUD will be used specifically for dental charting and clinical documentation, such as clinical notes, treatment plans, diagnoses codes and patient allergies
  • TrakCare remains the system for patient demographics and appointments
My specialty is currently utilising Digital Clinical Notes (DCN) for recording of information. Will this be affected?
  • The initial roll out will focus on those specialties currently using paper notes
  • There will be a hybrid phase during which some specialties will be recording their notes on Salud, and some will be recording on Digital Clinical Notes
  • All information input into SALUD will be viewable via clinical portal, allowing viewability across specialties
  • Engagement with specialties already on DCN will be communicated in due course prior to further roll out
When will SALUD go live?

We are currently working towards:

  • Training in August / September
  • Go‑live in September / October

These dates are indicative and will be confirmed closer to implementation.

Will I receive training?

Yes – all users will receive training appropriate to their role before go‑live.

More information on training sessions will be shared shortly.

How will training be delivered?

Training is expected to include:

  • Supporting materials such as quick reference guides
  • Face‑to‑face sessions
  • Online sessions
Will there be support at go-live?

Yes. There will be:

  • Ongoing help via Digital Services
  • Superusers available locally
  • On‑site support during go‑live
Do I need to prepare anything now?

No immediate action is required.

Further instructions – including training and system access – will be shared in advance.

Who can I contact if I have questions?
Where can I find updates?
  • This webpage
  • Updates shared via your department (namely the Dental Bulletin)
  • Communications from your clinical leads or managers

Resources

SALUD Dental Charting – A3 poster

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Please find below a selection of resources for staff use within Primary Care.

To help us improve this service for you and your colleagues, please feel free to provide feedback by clicking here.

General information

Use the Primary Care Visual Identity Guidelines to ensure your work meets the set guidelines.

Strategy Documents

Bulletins

Posters (for public display)

Use these posters to promote Primary Care and the new Hub on the NHSGGC website. There are different sizes for both professional and internal printing, as well as digital versions with and without a QR code.

Social media graphics

Use these graphics across social media to promote Primary Care and the new Hub on the NHSGGC website. There are different sizes for each platform.

Templates

Document templates without covers

Use for informal documents, forms, guidelines etc.

Document templates with covers

Use for longer or more formal documents.

Primary Care video

This video can be downloaded and used on public screens and TVs. Alternatively, YouTube can be used to easily share with the public and colleagues.

This video can be used internally to give colleagues more information and understanding about the Primary Care Strategy.

GP Out of Hours video

This video can be downloaded and used on public screens and TVs. Alternatively, YouTube can be used to easily share with the public and colleagues.

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Please find below materials produced for NHSGGC.

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Where is the Genetics Clinic?

Most people are offered an appointment at the Department of Clinical Genetics, Laboratory Medicine Building, Queen Elizabeth University Hospital, Glasgow.

Some people may be offered appointments at other Hospitals closer to their home, where these are available and appropriate.

A small proportion of people may be offered an appointment at a multidisciplinary clinic, with other Doctors or healthcare professionals as well as a Clinical Geneticist or Genetic Counsellor, where this is appropriate.

Queen Elizabeth Hospital Genetic Clinic Facilities and Disabled Parking

Queen Elizabeth Hospital Map, Travel Directions to Hospital and Parking

What will be discussed at the Genetic Clinic

People of all ages and with a wide range of health conditions are seen in the Genetic Clinic, and discussions are focussed on their questions.

These might include:

  • What is the diagnosis?
  • Is there a name for the condition?
  • What are the symptoms of the condition?
  • What is the chance of developing the condition?
  • What is the chance of relatives developing the condition?
  • Is there a genetic blood test available?
  • What are the options when planning a family? 
Information on Specific Genetic Conditions

See the following sites for A-Z lists of information on specific genetic conditions, and their associated support organisations 

Genetic Alliance

Contact: Conditions

MedlinePlus

Inheritance Patterns

Below are patient information leaflets explaining some of the different patterns of inheritance

Autosomal Dominant Inheritance

Autosomal Recessive Inheritance

Multifactorial Inheritance

X Linked Inheritance

Insurance and Genetic Testing

For information on genetic testing and insurance implications, please see information provided by the Association of British Insurers:

ABI Code on Genetic Testing and Insurance

Genetics and Insurance FAQs

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Referring a patient to the Genetic Clinic
Referral Guidance
Referring patients with a known clinical diagnosis for genetic testing

Please consider whether you could organise genetic testing yourself. We would be happy to see people with positive results thereafter if this is helpful. Sometimes, this allows relatives to seek genetic testing themselves, without the affected person needing to be seen in Clinical Genetics.

For available tests and referral criteria see the Scottish Genomics Test Directories for Rare and Inherited Disease and Cancer at Scottish Genomic Test Directories – Scottish Strategic Network for Genomic Medicine

Where you are referring a patient who does not have capacity to consent to genetic testing please ensure the relevant power of attorney is in place. Ideally, the person with power of attorney should also attend the appointment.

Where the patient lives distant from the QEUH site, is unable to travel, or has a life-shortening condition, please consider storing a genetic sample, so your patient could be offered a video appointment.

Information on how to send samples for storage and testing is found on our laboratory website Laboratory Genetics – NHSGGC

Referring patients with an uncertain clinical diagnosis for genetic testing

Please include results of all relevant clinical investigations unless these are on GGC clinical portal.

If there are affected relatives, please include as much information as possible, ideally their names, dates of birth and death, and address.

Referring patients planning a family to discuss reproductive options

If a couple have a personal or family history of a confirmed genetic condition, they can be referred to review their reproductive options/eligibility for Pre-Implantation Genetic Testing (PGT). These referrals can be made as for general referrals and will be triaged to the appropriate clinic.

If the couple become pregnant whilst on the waiting list they should contact our appointment team as soon as possible and their appointment may be expedited if appropriate.

Referrals of pregnant patients

If a pregnant couple with a family or personal history of a genetic condition wish to review their options for genetic testing during pregnancy please complete the prenatal referral form –https://forms.office.com/e/cH2vczJBbv. This pathway can also be used to make referrals related to abnormal scan findings. Referrals should be marked as urgent. Any queries about prenatal testing or referrals can be sent to ggc.wosprenatalteam@nhs.scot.

Where the genetic consultation will not alter the plans for this pregnancy, please make that clear in your referral. This will allow us to decide the urgency of the referral.

Referrals for Inherited Cardiac Conditions (ICC) Service

Referrals to the ICC Service are accepted from West of Scotland health boards and can be made via Sci gateway. There are two separate pathways, one for suspected Inherited Cardiac Conditions and one for families affected by sudden cardiac death or out of hospital cardiac arrest. For referrals from ICU after a cardiac arrest with unclear aetiology or suspected ICC, please consider sending a blood sample for DNA storage with the referral. Referrals and reviewed and triaged on a weekly basis. 

More information about Inherited Cardiac Conditions for patients and health care professionals is available though the Network for Inherited Cardiac Conditions Scotland, NICCS www.nn.nhs.scot/niccs/

Information on how to send samples for storage and testing is found on our laboratory website Laboratory Genetics – NHSGGC

Referrals or queries for Cancer Genetics service

Referrals can be sent in the same way as for general referrals but if you are uncertain whether this is required, or want to know whether testing is indicated (which can often be requested by mainstream clinicians), please email the cancer genetics team on ggc.cancer.genetics@nhs.scot 

Referrals or queries from Community Paediatrics
Part 1: Children who should be considered for referral for assessment by a Clinical Geneticist

The chance of identifying a single gene disorder in a child with a neurodevelopmental disorder (NDD) is highest when there is:

  • Moderate or severe global developmental impairment
  • Severe language disorder (including non verbal)
  • Gross motor delay
  • Facial dysmorphism
  • Congenital anomalies
  • Abnormal growth eg microcephaly, macrocephaly, height &/or weight less than -2SD or more than +2SD, asymmetric growth
  • Other significant issues eg deafness, significant visual impairment, epilepsy, movement disorder, endocrine

Children with a NDD and any of the above should be considered for first line developmental screening blood tests to include chromosomal microarray and Fragile X syndrome and referral for assessment and consideration of further investigation by a Clinical Geneticist in one of their clinics where they will be seen and examined in person.

In the absence of any of the above, mild intellectual disability, autism spectrum disorder, ADHD, Tourette syndrome, hypermobility are more likely to be multifactorial with genetic +/- environmental contribution. Family history of other individuals with similar issues +/- mental illness in adulthood could support this. Chance of recurrence is significant but there can be considerable variability. These children do not require assessment by a Clinical Geneticist. The Multifactorial inheritance leaflet might be useful https://www.nhsggc.scot/clinical-genetics/.

Part 2: Referral with chromosomal microarray findings
Neurosusceptibility loci

The most common finding is a loss or gain involving a neurosusceptibility locus. These are associated with variable phenotypes and incomplete penetrance and can be considered as one of the many genetic factors contributing to multifactorial aetiology. There are leaflets available on the Unique Rare Chromosomal and Genetic Disorders website (www.rarechromo.org). Provided a child does not have any of the other issues listed above, with exceptions listed below, the family could be provided with the relevant leaflet and would not need to be referred for assessment by a Clinical Geneticist.

If parents would like to be tested for the variant or to discuss implications for a future pregnancy they can be referred for genetic counselling by a Genetic Counsellor who might offer them a telephone, video or in person appointment. When a neurosusceptibility locus variant is identified in the context of parental consanguinity there would be a higher chance of both parents carrying the variant and homozygous deletion or duplication (potentially with more severe consequences) in a subsequent pregnancy. Please consider referral for genetic counselling in these circumstances.

Exceptions who could be referred for assessment by a Clinical Geneticist include:

  • neurosusceptibility loci associated with specific medical issues
  • 1q21.1 microdeletion
  • 1q21.1 microduplication
  • 7q11.23 duplication (involving ELN)
  • 16p13.11 microduplication (involving MYH11)
  • 17q12 microdeletion (involving HNF1B)
  • neurosusceptibility loci which do not have Unique Disorder guides
  • deletions or duplications involving neurosusceptibility loci which are larger than typical or which overlap but have atypical breakpoints (the laboratory report will state if the deletion/duplication found has atypical features).

Leaflets are available for the following neurosusceptibility loci. These children do not require assessment by a Clinical Geneticist unless they have features listed in Part 1.

  • 2p16.3 (NRXN1) deletion
  • 15q11.2 microdeletion (Breakpoint 1-2)
  • 15q13.3 microdeletion
  • 16p11.2 microdeletion
  • 16p11.2 microduplication
  • 16p12.2 deletion
  • 16p13.11 microdeletion
  • 17q12 microduplication
  • 22q11.2 microduplication
  • 22q11.2 distal deletion syndrome
Variants of uncertain significance

Variants of uncertain significance are reported if they involve a developmental gene or if they are relatively large and involves a number of genes not known to be associated with NDD. In these circumstances there is not enough information available to determine if the copy number variant is relevant or not and therefore parents should not be advised to look on the internet as they are likely to come across irrelevant or misleading information.

In these circumstances further evidence can sometimes be obtained by testing parents for the variant usually via their GP practice or community hub. It is important to note on the request if the parent has neurodevelopmental, physical or health issues similar to their child. There is a patient information leaflet explaining why parental samples are required.

Once the lab has analysed both parents’ samples (if available) they will write their conclusion and issue an amended report. If the variant has been inherited from a parent who appears to be healthy and without evidence of NDD themselves this would suggest the variant is more likely to be benign and the child does not need to be referred for assessment by a Clinical Geneticist unless they meet criteria described in Part 1. Otherwise it is likely the report will suggest referral to Clinical Genetics.

Pathogenic variants

These are either recurrent variants with high penetrance such as 22q11 deletion (DiGeorge), 7q11.23  deletion (Williams), 1p36 deletion, 15q11.2q13 deletion (Prader Willi or Angelman), 15q11.2q13 duplication etc or rare (often unique to the family) variants which are likely to be pathogenic due to their size or involvement of 1 or more known developmental genes.

Please refer these to Clinical Genetics where they will be triaged to be seen either by a Clinical Geneticist or Genetic Counsellor.

Incidental findings

These are pathogenic or likely pathogenic variants which do not appear to explain the child’s phenotype but might have implications for their future health or reproductive risks (eg carrier of a common autosomal recessive disorder or female carrier of an X-linked disorder).

Please refer these patients to Clinical Genetics where they will be triaged to be seen either by a Clinical Geneticist or Genetic Counsellor.

Absence of heterozygosity (AOH)

Detection of AOH is not an indication for referral on its own however if the child fulfils any of the criteria in Part 1 they could be referred for assessment by a Clinical Geneticist.

Part 3: Children diagnosed with a single gene disorder

Any child who is suspected or has been identified as having a genetic disorder caused by variants in a single gene either clinically or on genetic or biochemical testing can be referred to Clinical Genetics where they will be triaged to be seen usually by a Clinical Geneticist for the initial appointment and for family follow up by a Genetic Counsellor thereafter if indicated. Single gene disorders might include Fragile X syndrome, Neurofibromatosis type 1, Rett syndrome, Tuberous Sclerosis Complex. Some metabolic or neurological disorders might require referral to Paediatric Neurology, Metabolic or another clinic for management of their symptoms but Clinical Genetics can coordinate referral and follow up of multisystem disorders and provide genetic counselling to parents and the wider family if required.

Fragile X results

Any child (male or female) found to have a full expansion in the FMR1 gene can be referred to Clinical Genetics.

If a premutation is identified, though it is unlikely to explain the child’s NDD, the child can be referred to assess if further investigations are indicated and to arrange genetic counselling for parents and the wider family.

If an FMR1 intermediate allele is identified it does not explain the child’s NDD and you might wish to refer them for assessment by a Clinical Geneticist if they fulfil criteria outlined in Part 1. There is a specific leaflet explaining implications of this finding mainly for future generations. If family members wish to be seen to discuss these they can be referred to Clinical Genetics where they will be contacted by a Genetic Counsellor.

Part 4: Advice regarding investigations, referrals or interpretation of results.

Please contact the Clinical Geneticist who runs your local Clinical Genetics clinic. If the need for a reply is urgent please contact ggc.genetics.referrals@nhs.scot where your query will be directed to the Duty Doctor for the day.

Referring unaffected children for genetic testing

We would usually offer testing to children when there is a family history of a condition that affects children during childhood.

Genetic testing is often only possible where there has been a gene variant identified in someone in the family, or where there is a living affected individual who can be tested.

Please provide the name, date of birth and address of the person with the gene variant, and or ask your patient to seek a copy of the genetic test report.

We would not usually offer genetic testing to children for adult onset conditions, and suggest they are advised to seek referral when they are adults.

Referring unaffected adults for predictive genetic testing based upon a family history

Genetic testing is often only possible where there has been a gene variant identified in someone in the family, or where there is a living affected individual who can be tested.

Please provide the name, date of birth and address of the person with the gene variant, and or ask your patient to seek a copy of the genetic test report.

If there is no known familial gene variant and all the affected people with that condition are now deceased, then it is unlikely that we could offer a genetic test to relatives.

However, for conditions such as cancer and cardiac conditions, even if genetic testing cannot be offered, the patient can be seen to evaluate their risk and for guidance on clinical screening.

How to make a referral

Please read the guidance above for the specific referral type before making a referral.

Health professionals can make an outpatient referral to Clinical Genetics via:

  • Sci Gateway
  • Post: Clinical Genetics, Level 2, Laboratory Medicine Building. QEUH, Govan Road, Glasgow, G51 4TF
  • Email: ggc.genetics.referrals@nhs.scot

Key information to include in the referral:

The details (name and D.O.B) of any related individuals who are already known to our service.

If the family have an existing reference number (e.g. 01234) please include this.

A way for us to contact YOU (the referrer) about the referral (ideally an e-mail address).

Please check that the patient’s phone number is correct.

How to confirm your referral has been received

Our genetic appointments do not show on TRAK. Patients will usually receive an acknowledgement letter upon receipt of their referral.

Please note that appointment waiting times vary between clinics, with some currently having waiting times of 1 to 2 years.

If you wish to check the status of a referral please contact the appointments team- ggc.genetics.referrals@nhs.scot

Patients NOT likely to need a referral
Cystic Fibrosis

Cystic Fibrosis (CF) is an autosomal recessive condition (https://www.genomicseducation.hee.nhs.uk/genotes/knowledge-hub/autosomal-recessive-inheritance/) with an estimated prevalence of ~1 in 3,000.  The most common associated complications are chronic lung disease, exocrine pancreatic insufficiency and male infertility.  It is estimated that ~1 in 20 to 1 in 25 of us are carriers of CF.  Being a carrier of CF is not expected to have any implications for your health, but it may have reproductive implications if both partners are found to carry CF variants.

Referral to Clinical Genetics:

We no longer see patients for CF carrier testing in the genetics clinic, unless there are additional concerns.  A couple who are both carriers of CF can be referred to Clinical Genetics if they are family planning and would like to discuss reproductive risks and options (e.g. preimplantation genetic testing and prenatal testing). If a patient has a family history of CF and is pregnant, they should be referred to Clinical Genetics to review their options.

Requesting CF Carrier Testing:

Non-genetic specialists (including GPs) can request CF carrier testing (5-10ml EDTA sample, sent to the Genetics lab).  It is imperative to state the name and details of the patient’s known affected relative. Further information on how to arrange carrier testing and interpretation of results can be found in this document – Cystic Fibrosis information sheet for GPs (link) or in the Scottish Genomic test directory ( NSD611-003.20-SSNGM-Test-Directory-Rare-Inherited-Disease-V5.pdf)

Genetic test request form can be found here: https://www.nhsggc.scot/downloads/routine-genetic-testing-request-form-2/. Alternatively, testing can be requested on Trakcare in ‘Lab – Adult’ using the request item ‘Germline molecular genetic analysis or storage’. Within the request, for ‘Testing Required’, select ‘Cystic Fibrosis/CFTR related condition’.  If ordering electronically please make sure to include the information about the relative known to be affected/a carrier as outlined above, as well as our reference/pedigree number if known.

Haemoglobinopathies

Haemoglobinopathies are a group of inherited blood conditions caused by alterations in the genes that produce haemoglobin. Haemoglobin is the substance inside our red blood cells which picks up oxygen as blood passes through the lungs and carries it to the rest of the body. How an individual is affected by a haemoglobinopathy condition can vary, with some conditions causes mild to moderate anaemia and others causing significant health issues, such as sickle cell anaemia and beta thalassemia major. Typically haemoglobinopathies are inherited in an autosomal recessive pattern (https://www.genomicseducation.hee.nhs.uk/genotes/knowledge-hub/autosomal-recessive-inheritance/). Carriers of alterations in the haemoglobin genes are typically well and do not experience and health problems because of being a carrier.

Genetics clinic referrals:

We no longer see carriers of haemoglobinopathies in the genetics clinic, unless a couple are both carriers of a haemoglobinopathy and are family planning. These couples can be referred to Clinical Genetics to review their reproductive risks and options.

Requesting haemoglobinopathy screening:

Non-genetic specialists (including GPs) can request a haemoglobinopathy screen which is a haematological blood test that can determine haemoglobinopathy carrier status. Testing can be requested via TrakCare and a 4ml EDTA (purple topped) sample should be collected.

If a patient is found to be a carrier of a haemoglobinopathy condition and they are considering pregnancy testing should also be arranged for their partner. As above, carrier couples can be referred to Clinical Genetics.

Further information about haemoglobinopathies can be found at – https://www.gov.uk/government/publications/handbook-for-sickle-cell-and-thalassaemia-screening/understanding-haemoglobinopathies.

Hereditary Haemochromatosis

We do not routinely see patients for Haemochromatosis diagnostic or carrier testing in the genetics clinic, unless there are additional concerns. 

Requesting Genetic Testing

Non-genetic specialists (including GPs) can request haemochromatosis carrier testing (5-10ml EDTA sample, sent to Laboratory Genetics). Guidance for testing and management of Haemochromatosis have been produced by the British Society for Haematology (BSH).

Acceptance criteria must be met and stated on the request form (see  The Scottish Genomic test directory, NSD611-003.20-SSNGM-Test-Directory-Rare-Inherited-Disease-V5.pdf)

Genetic test request form can be found here: https://www.nhsggc.scot/downloads/routine-genetic-testing-request-form-2/

*Before requesting this test, please check clinical portal to ensure that the patient has not been tested before. The results of these genetic tests will not change over time, and so repetition is of no value.

Non-healthcare professionals are not permitted to request genetic testing.

Hereditary Haemochromatosis information for clinicians

Haemochromatosis is a common inherited condition that affects how the body absorbs iron from your diet. It is more common in those with Northern European ancestry. 

Individuals with hereditary haemochromatosis experience a slow build-up of iron in the body over a number of years. Too much iron in the body is known as iron overload.  The excess iron can be stored in organs and tissues and lead to symptoms such as fatigue, joint pain, abdominal pain, shortness of breath and weight loss.  The condition can also affect the organs in the body such as the pancreas and the liver, which can lead to diabetes, liver cirrhosis, arthritis, cardiac problems and skin discolouration.

Treatments can include iron monitoring, chelation therapy, venesection to remove blood and reduce iron levels and changes to diet and lifestyle.

The genetics of Hereditary Haemochromatosis

Haemochromatosis is caused by variants in a gene called HFE gene.  We all have two copies of this gene as we inherit one from each of our parents.  For an individual to be affected with hereditary haemochromatosis, they must have alterations on both copies of the HFE gene. Carriers have an alteration on only one of their copies of the HFE gene. Therefore, for an individual to be affected by the condition, both parents must be carriers.

When both parents are carriers of Hereditary Haemochromatosis, in every pregnancy there is a:

  • 1 in 4 (25%) chance of having a baby who is not affected and not a carrier
  • 2 in 4 (50%) chance of having a baby who is a healthy carrier
  • 1 in 4 (25%) chance of having a baby who is affected by the condition

This is known as autosomal recessive inheritance.

Genetic testing for Hereditary Haemochromatosis 

Individuals who meet the testing criteria outlined the Scottish Genomic test directory (link can be found on the website) or who have a first-degree family member who is known to carry an HFE variant can have genetic testing arranged by non-genetics specialists (including GPs). Testing requires a 5-10ml EDTA sample sent to Laboratory Genetics with a genetic test request form (see website for link). Testing covers common alterations C282Y and H63D.

Genetic test results interpretation

No Variants detected

If a patient’s results showed they do not have the C282Y or H63D alterations in the HFE gene they are not likely to have hereditary haemochromatosis. We would not offer any further genetic testing or clinical follow up. If an individual is experiencing iron overload symptoms they should be investigated and treated as appropriate, but these are not likely to be caused by hereditary haemochromatosis.

Heterozygous for C282Y or H63D

If a patient has been found to be a carrier of HFE-related haemochromatosis they have an alteration on one copy of their HFE gene. Carriers of the condition are generally well and are unaffected with the condition. To be affected an individual must have genetic alterations on both their copies of the HFE gene, which leads to iron overload.

As carriers are generally well, they do not require any treatment or follow up therefore there is no further genetic testing that we would offer to your patient. If an individual is experiencing iron overload symptoms they should be investigated and treated as appropriate. However, these symptoms are not likely to be caused by HFE-carrier status.

Homozygous C282Y

Individuals who are found to be homozygous for the C282Y alteration in the HFE gene are generally affected by haemochromatosis and experience iron overload. Symptoms can be variable but generally include fatigue, joint paint, abdominal pain and weight loss. If left untreated it can lead to worsening symptoms including liver disease and diabetes. If an individual has raised iron levels, they should be referred to gastroenterology for management and follow up (see full management guidelines via link on website).

Compound Heterozygous C282Y/H63D

Individuals who are found to be compound heterozygous for the C282Y and H63D alterations in the HFE gene can experience iron overload. However, iron overload in these individuals happens at a slower rate than those homozygous for C282Y. Individuals can experience symptoms but are at a lower risk of serious complications such as organ failure. If ferritin and transferrin saturations levels are normal it is recommended that individuals have these check every 3 years. This can be done through the GP. If levels are raised individuals should be referred to Gastroenterology for management and follow up. 

Homozygous H63D

Individuals who are found to be homozygous for the H63D alteration in the HFE gene are unlikely to experience iron overload. Some individuals can experience iron overload and should have any symptoms investigated. This result does not confirm or exclude a diagnosis of haemochromatosis. If homozygous individuals do not have a raised iron level regular iron monitoring is not required. Genetic testing is not recommended for family members of homozygous individuals who do not have symptoms.

Implications for children

Testing Children – Carriers

If a patient is a carrier of haemochromatosis (heterozygous for H63D or C282Y) any children have a 1 in 2 (50%) chance of also being a carrier. Genetic testing can be carried out from the age of 16 via the GP practice. As mentioned, Carriers are generally well and do not experience any symptoms. If both parents are carriers there is a 1 in 4 (25%) chance any children will be affected. If any children are found to be affected, they should be referred to gastroenterology for follow up and management.

Testing Children – Affected

If a patient is affected with haemochromatosis any children that they have will be a carrier of the condition. This is because affected individuals have alterations in both copies of their HFE gene. We always pass on one copy of each of our genes to our children, so children of affected individuals will always inherit an altered copy of the HFE gene making them a carrier of haemochromatosis. If an affected individual’s partner is a carrier of haemochromatosis there is a 1 in 2 (50%) chance any children will be affected with the condition. Children can be tested from the age of 16 through their GP practice. If they are found to be affected, they should be referred to gastroenterology for management and follow up.

Implications for first degree family members

Parents and siblings of individuals who are carriers or affected by Hereditary Haemochromatosis can request genetic testing via their GP to clarify their carrier status. Partners of individuals who are affected or carriers can also seek testing via the GP. Results interpretation and management guidance as above.

Reproductive implications

If an individual is affected with Hereditary Haemochromatosis and their partner is a carrier, there is a 1 in 2 chance any children they have will be affected by the condition. If their partner is not a carrier any children, they have will all be carriers of the condition. Since Hereditary Haemochromatosis is an adult-onset condition with a number of management options genetic testing during pregnancy (prenatal testing) is unlikely to be offered. See above section about testing children.

If a couple are both carriers of Hereditary Haemochromatosis any children have a 1 in 4 chance of being affected and a 1 in 2 chance of being a carrier. As above prenatal testing is unlikely to be offered, and children can consider testing from the age of 16 via their GP.

Patient resources

Further information for patients can be found at the following links:

Further useful information about the condition can be found via the NHS Conditions website: Haemochromatosis – NHS (www.nhs.uk)

Hypermobile Ehler’s Danlos Syndrome

Hypermobile Ehler’s Danlos Syndrome is characterised by hypermobile joints, widespread musculoskeletal pain and other symptoms. It is a clinical diagnosis which does not require referral to Rheumatology or Clinical Genetics. It is a multifactorial condition and there is no diagnostic genetic test available.

A GP toolkit (links below) initially produced by the Royal College of GPs, provides information on diagnosis and management. The toolkit outlines the rare circumstances in which patients should be referred to Clinical Genetics.  

Some additional resources are listed below.

GP Toolkit on diagnosis and referral guidance

Information for professionals on classical EDS, with useful clinical photographs www.ncbi.nlm.nih.gov/books/NBK1244/

Patient and family support group www.ehlers-danlos.org

NHS Inform hypermobility information for patients www.nhsinform.scot/illnesses-and-conditions/muscle-bone-and-joints/conditions-that-can-affect-multiple-parts-of-the-body/joint-hypermobility

Information for patients on multifactorial inheritance

Requesting Genetic Testing

For available tests and referral criteria see the Scottish Genomics Test Directories for Rare and Inherited Disease and Cancer at Scottish Genomic Test Directories – Scottish Strategic Network for Genomic Medicine

Information on how to send samples for storage and testing is found on our laboratory website Laboratory Genetics – NHSGGC

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Supervision provides a safe place for reflection for all AHPs, regardless of band or role (registered staff and health care support workers).

For further information and support contact, Jane Dudgeon, NHSGGC AHP Practice Education Manager

Email: jane.dudgeon@ggc.scot.nhs.uk

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Introduction

The Care Home Education Facilitators (CHEFs) provide support to current and potential Practice Learning Environments (PLEs, clinical placements) for undergraduate student nurses. Non-NHS placements work with different governance and legislative system from the NHS and the CHEFs, therefore provide a more bespoke way of supporting nursing and care teams. Download our poster outlining the role of Care Home Education Facilitators, or visit NES Care Home Education Facilitator site for more details about the role.

Care homes can provide excellent learning opportunities for nursing students and students from a variety of other healthcare professions. In providing these learning experiences, they also expose these students to the possibility of a valued career in the care home sector and non-NHS settings on completion of their studies. 

NHS Education England mapped all the NMC proficiencies and skills that students must achieve to various non-NHS placements. They created the guide below so students and practice supervisors can easily see all that they can achieve in a care home or similar placement. 

Skills for health – NMC proficiencies guide
Resources for care home Practice Supervisors and Practice Assessors

There are usually fewer Practice Supervisors (PS) and Practice Assessors (PA) in care homes than in NHS PLEs, and many PS are senior carers / nursing assistants rather than nurses. Our experience and feedback is that bespoke tools and resources are required to help and support these staff members in this role, as many don’t have other PS/PAs for immediate support. We offer additional support to non nurse PS on aspects of the NMC code, NMC role and the content of a nursing degree as many will be unfamiliar with this. 

Further support for staff

There are many other group and 1-to-1 sessions that CHEFs can support staff with in line with the national CHEF role descriptor and the Practice Education priorities: 

  • General updates and support visits  
  • PAD (completing the student paperwork)  
  • An introduction to Future Nurse (proficiencies for ALL nurses) and SSSA (student supervision and assessment guidelines)  
  • Registering and using the free Turas Learn online learning system & CHEF Turas learning catalogue.  
  • The NMC Practice supervisor and Practice assessor roles – flexibility in practice examples.  
  • Using the Turas professional portfolio for CPL, CPD and revalidation.  
  • NMC Revalidation workshops  
  • Working with students with competency or professionalism difficulties including creating development support plans DSP 
  • Updating and using QMPLE  (quality management system for practice learning environments) 
  • The open university degree – awareness session  
  • Signing off platform proficiencies and skills annexes in the PAD
  • Exploring complex proficiencies and skills for students 
  • Supporting PS / PA to make reasonable adjustments for students (religion, disabilities, mental ill health etc.)  
  • Completing the student final assessment and grading matrix.  
  • Using the student activity “grab bags” as a resource  
  • Creating a student welcome pack  
  • Using the national pharmacology workbook with students 
  • Using the Care Home placement workbook with students 
  • Clinical supervision – CHEFs delivering guided reflection for staff (short term)  
  • Teaching of the entire practice supervisor / assessor content rather than it being self-directed – small 1-hour sessions over 6 weeks. (a quality improvement trial 2024-2025)
Placement resources that students should access

All information about individual care homes and similar placements is stored and accessible in the online platform QMPLE – the quality management of the practice learning environment website. The “suggested reading” section on QMPLE contains links to videos and resources that students should access prior to, and during their non-NHS placement. Please discuss with your CHEF if you would like QMPLE access as a care home staff member.

Podcast

The Student Experience – Care Homes | The Practice Education Learning Lounge

Student care home placement case studies

In order that students make the most of their Care home, or Non-NHS placements the CHEFs have devised these case studies – Case Study 1 and Case Study 2 to help give an overview of how your placement might work.

Example placement timetable

This example timetable will help you and your Practice Supervisors plan for learning and development opportunities. You can download a copy and modify for your own placement. We also have a blank copy of 8-week timetable for students available.

Care home workbook 

Nationally, the CHEFs created a Care Homes Workbook which we advise all students to print off and complete during their placements, as this may provide evidence to practice supervisors and practice assessors of achieve proficiencies and skills.   

Expectations of student and supervisors on care home placements 

The below 3 links will indicate to you examples of care, nursing activities and behaviours expected of 1st, 2nd, and 3rd year students on placement, as well as a reminder of what to expect from supervisors and assessors 

Expectations for 1st year (part 1) students 
Expectations for 2nd year (part 2) students 
Expectations for 3rd year (part 3) students 
Activities 3rd year students should be undertaking

Pharmacology workbook 

This NES Pharmacology Learning Resources Toolkit is also very helpful especially as many care activities around medicines management are very different in care homes.

“Grab bag” activities 

Lastly, these “Grab bag” activities were created so that if clinical activity is really busy or your supervisor (usually the only nurse or senior carer on duty) is called away to an urgent task which wouldn’t be appropriate for student learning; students can complete one of these activities, using evidence, research and local policy, and I relate it directly to the care of the residents in the clinical area. 

Grab Bag instructions
Continence
Prescribing
Pressure ulcer prevention and management
Respiratory Care
Stress and Distress
Urinary Tract Infection

Raising concerns about care or practice on clinical placements
– Turas protocol and templates

Frequently Asked Questions for non-NHS placements

Other CHEF educational support

Aside from facilitating student nurse education in care homes, we also provide bespoke education sessions for care home staff in a number of NHS Education for Scotland (NES) initiatives and useful development sessions.  

At present we offer: 

The above links will provide general information on these programmes, but please contact your CHEF if you would like more information on bespoke provision within your care home or clinical environment. 

Lastly, we wish to provide links to many other resources for care home staff to help in your own CPD, but also for the education of students and learners in practice:

CHEF contact details

East and West Glasgow City and East Dunbartonshire  
Allan Dickins RNA 
allan.dickins@nhs.scot 
07789 271 460 

Glasgow City South, Inverclyde, Renfrew and West Dunbartonshire 
Jamie Gillies RNA 
jamie.gillies2@nhs.scot 
07901 587 862

Fiona McCartney RNA
fiona.mccartney@nhs.scot
07971 966 784

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