National Referral Support Service for The NHS Gender Incongruence Service for Children and Young People

The NHS is building new services for children and young people with gender incongruence, alongside a managed closure of the existing Gender Identity Development Service (GIDS) based at the Tavistock and Portman NHS Foundation Trust by March 2024.

To help facilitate a smooth transition into the new services, Arden and GEM is providing a National Referral Support Service. We will hold the national waiting list on behalf of NHS England, NHS Wales and the new providers of Children and Young People’s Gender Incongruence Services.

We will manage the national waiting list and transfer children and young people from the waiting list to the new services once they are established, in order of their original referral date.

We are not able to offer clinical advice as part of our service, so if you need help from a trained healthcare provider, please contact your GP or referrer in the first instance.

Contact us
If you need to let us know about changes to your referral details please contact us at agem.cyp-gnrss@nhs.net. We are unable to offer clinical advice to children or young people or their families.

Feedback and complaints
If you would like to make a formal complaint about our service, please contact agem.cyp-gnrss@nhs.net.
For any other complaint including about the new services, please go to the NHS England pages or to the NHS Wales pages.

Transition of services to new providers

NHS England has set out plans for how it will start building new services which includes increasing the number of clinicians who work in them as well as increasing the focus on quality and patient experience. You can read more about this on the NHS England website.

To help facilitate a smooth transition to the new services, Arden and GEM is managing the national waiting list on behalf of NHS England, NHS Wales and the new providers.

Arden and GEM now holds the referral details of all children and young people who had previously been referred to the service at the Tavistock and Portman NHS Foundation Trust, and Arden and GEM is receiving new referrals directly from referrers. We will send your referral to one of the new providers once they are up and running and when you have reached the top of the waiting list; about 3 months before you are planned to be seen. At this stage you’ll be asked which provider you would prefer to be seen by. The available options will increase over time. All of the providers will deliver services in the same way, working to a single NHS service specification and clinical model.

Waiting list letters

Throughout August and September 2023, letters are being sent to the parents of children 15 and under, and to young people 16 and over, and who are on the waiting list. These letters will provide confirmation that their referral is now being held by Arden and GEM on behalf of NHS England, as well as information on next steps, the referral details held and how to access support while on the waiting list.

Young people who are 17 and older will be the first to receive a letter, with other age groups to follow shortly thereafter. We anticipate it will take 4-6 weeks for everyone to receive a letter from NHS England.

If you believe you are on the waiting list and have not received a letter by Friday 30 September 2023, please contact us via agem.cyp-gnrss@nhs.net

Gender Experience Summary Form

If you are still waiting for your first appointment, over the next few months we will be asking you to complete the Gender Experience Summary (GES). The purpose of this form is to help prevent unnecessary delays in offering a first appointment.

The process of completing this GES might also help you to think about any additional support needs that you may have. To help with this, we will send a copy of the completed GES to your GP. This will allow them to support you locally, if needed, while you are on the waiting list.

How do I complete the GES?
There are three different ways of completing the GES:

• Online (this is preferred, if possible) – we will send you a direct link in the coming months
• When we contact you, you will be offered a choice to complete a paper version if this is your preference
• If you need help to complete the GES a telephone service will be available.

While it isn’t mandatory to complete a GES, sending more up to date information may help to avoid any delays in offering you a first appointment and in starting your assessment in the service. The information that you provide through the GES will not affect your place on the waiting list, unless you tell us you wish to leave the waiting list.

Referral Review and Guidance Service

To help ensure that children and young people are being supported while on the waiting list, NHS England has commissioned an experienced NHS provider of children and young people services and gender incongruence services to review all referrals and recommend some local actions that the referrer may wish to undertake for their patients. This service is being provided by Nottinghamshire Healthcare NHS Foundation Trust.

Experienced clinicians will review your referral details including your GES. If appropriate, they may make some recommendations to your referrer about how you could be supported by additional local services while you wait for your first appointment.

Any recommendations made by the referral review and guidance service will not affect your place on the waiting list.

The waiting list

Children and young people are being seen in order of their original referral date. Please do not contact the Tavistock and Portman NHS Foundation Trust (who managed the previous service) or any of the new providers about your referral or about your time on the waiting list as they will not have this information.

Once the new services begin seeing patients, we will update this section.

Unfortunately, there are long waiting times for the children and young people gender incongruence services. NHS England is building and expanding services in order to bring waiting times down over time, but in the immediate term waiting times will remain long.


Where to get support while you wait

Children, young people and their families are strongly discouraged from sourcing puberty suppressing or gender affirming hormones from unregulated sources or from on-line providers that are not regulated by UK regulatory bodies.

We know that long waiting times can understandably cause anxiety and distress for young people and families.

If you are distressed, ask your GP to refer you to the local Children and Young People's Mental Health Service (CYPMHS), also known as Children and Adolescent Mental Health Services (CAMHS). CYPMHS / CAMHS may be able to offer support while you wait for your first appointment with the Children and Young People’s Gender Incongruence Services.

We have gathered some additional resources that may provide support below:

• NHS - Live Well
  The NHS Live Well pages provide advice for teenagers confused about their gender identity.
  
  
• Every Mind Matters
  Every Mind Matters provides support, including tips on how to improve your mental wellbeing.
  
  
• YoungMinds
  YoungMinds has a wealth of resources on their website, as well as providing dedicated crisis services.
  The YoungMinds Crisis Messenger provides free crisis support every day of the week, at any time, day or night. You just need to text YM to 85258. All texts are answered by trained volunteers, with support from experienced clinical supervisors.
  
  
• Papyrus
  Papyrus (Prevention of Young Suicide) provides advice and support for young people who feel like they want to take their own life, and all their advice is confidential. You can:
  
  • call their helpline, HOPELineUK, on 0800 068 41 41
  • text them on 07786 209 687.
    
    
• MindEd
  MindEd is a free educational resource on children, young people, adults and older people's mental health.
  • Catalogue of resources.
    
    
• Samaritans
  Samaritans is an organisation you can ring at any time of the day or night. They'll help you and listen to how you’re feeling. You can:
  
  • call them on 116 123
  • email them at jo@samaritans.org
    
    
• SHOUT
  SHOUT provides free, confidential, 24/7 text message support in the UK for anyone who is struggling to cope and anyone in crisis. You can text SHOUT to 85258.This service is free on all major mobile networks.
  
  
• ChildLine
  ChildLine provides a confidential telephone counselling service for any child with a problem. It comforts, advises, and protects. You can:
  
  • call 0800 1111 any time for free
    
  • have an online chat with a counsellor
    
  • check out the message boards.
    
    
• The Mix
  The Mix provides a free confidential telephone helpline and online service that aims to find young people the best help, whatever the problem. You can:
  
  • call 0808 808 4994 for free – lines are open from 11am to 11pm every day
    
  • access the online community
    
  • email The Mix.
    
    
• RCPSYCH
  The Royal College of Psychiatrists also has information for young people, parents and carers about young people's mental health.

Further information on help for children and young people can be found at nhs.uk.

Where to get urgent help

If it’s an emergency or you need urgent help:

• If you or someone else is in danger, call 999 or go to A&E now

If you or a loved one are struggling and facing a mental health crisis, you can call your local NHS urgent mental health helpline any time of day or night.

Find a local NHS urgent mental health helpline. If you live in Wales click here for NHS 111 Wales.

If you need urgent support but don’t want to go to A&E or call 999, you can:

• call Samaritans on freephone 116 123 – they are always open and are there to listen
  
• contact your GP surgery and ask for an emergency appointment
  
• contact NHS 111. For NHS 111 Wales
  
• contact your local crisis team (CRHT), if you’re under their care
  
• If you’re under 19, you can also call 0800 1111 to talk to Childline. The number will not appear on your phone bill.

If you want to help someone else, see the page on the Mind website about how to help someone else seek help, including what can I do if it's an emergency.

Making a referral

Arden and GEM manages all referrals to NHS Children and Young People’s Gender Incongruence Services on behalf of NHS England and the new providers.

If you have any questions on how to make a referral, contact agem.cyp-gnrss@nhs.net with any queries.

Please do not contact The Tavistock and Portman NHS Foundation Trust for any queries about previous or new referrals.

Who to refer?
Children and young people up to 16 years of age with features of gender incongruence as described in NHS England’s service specification can be referred into this service. Self-referrals cannot be accepted under any circumstances.

Download and complete the referral and risk assessment forms below and send them to the Children and Young People’s Gender Incongruence National Referral Support Service at agem.cyp-gnrss@nhs.net.

For young people aged 17 and older, you may wish to consider whether a referral into an Adult Gender Dysphoria Clinic is appropriate. The adult service accepts referrals from 17 years of age, though waiting times into the adult service are also currently long. Anyone who wants to transfer their referral to adult services will have their original referral date honoured. Referrals to an adult clinic should be made directly to the relevant provider.

At the instruction of NHS Wales, referrals of children and young people in Wales will only be accepted if made by Child and Adolescent Mental Health Teams with prior approval from Welsh Health Specialised Services.

Advice for referrers
Please carefully consider the appropriateness of a referral using the guidance below and on the form before making a referral. Not everyone who identifies with a gender other than their natal sex, or whose gender expression is different from what others might expect of them, will need to be seen by a gender specialist.

There is a high demand for these specialist services and long waiting times for a first appointment.

Referring professionals must discuss the referral with the family / carer of the child / young person to provide detailed referral information and seek their agreement.

Clinical responsibility remains with the referrer and the local professional network until the patient is seen by Children and Young People’s Gender Incongruence Services.

Advice on completing the form
The referral form requests details about different aspects of the child or young person’s life. Referrers should provide as much information as possible at the earliest opportunity. The most common reasons for requesting further information from the referrer are:

• Clarifying what the young person/family is seeking from Children and Young People’s Gender Incongruence Services
• Understanding detailed gender history: when incongruence was first noticed, how it has been responded to, any social transition (e.g., changes in pronouns, name, appearance), length of time living in role, etc.
• Ensuring appropriate family/carer/guardian consent
• Identifying which other services, and who from those services are also involved
• Clarifying family and developmental history
• Understanding who will be providing input with this young person and family while they wait to be seen by Children and Young People’s Gender Incongruence Services (e.g., care plan)
• Risk has been identified without a care plan
• Risk is unclear.

To help us deal efficiently and effectively with referrals, the following referrals will not be accepted:

• Hand-written referrals
• Referrals made without use of the referral form
• With referrals for under 16s where parental consent is not present it is advisable that clinicians explore with the young person the reasons as to why they do not wish their parents/guardian to be involved in the referral to a specialist service. They should try to build a therapeutic relationship with the young person to explore this. It is important that young people have adult support for a referral to a gender incongruence service and to attend any future appointments. As with any other referral to a clinical service, when the patient is under the legal age of presumed capacity to consent, if they still want to go ahead without their parents' or carers' knowledge or consent, GPs and clinicians are advised to consider the Gillick and Fraser guidelines. The following information looks at how this can be applied in practice
• Referrals where it has been indicated the young person is the only person to be contacted, but the contact provided is the parent’s/carer’s postal address
• Self-referrals from young people or families.

Referrers may find the referral form itself a useful resource, when considering how to approach your conversations with children and young people about their gender.

Backdating of referrals
Please note that unless a clear administrative error has been made by us, referrals will not be backdated. This is to ensure equity for all young people referred to Children and Young People’s Gender Incongruence Services, including those already on the waiting list.

Risk and safety
Children and young people experiencing gender incongruence or gender dysphoria are a vulnerable group and may experience a higher incidence of co-occurring mental health issues. It is important to be aware that at present there are long waiting times for Children and Young People’s Gender Incongruence Services, and young people may require additional support with gender distress and other issues during the wait. It is strongly recommended that plans are drawn up by the referrer and local professional network to ensure the needs of the young person are being met in the interim and clearly communicated on the referral form.

Children, young people and their families are strongly discouraged from sourcing puberty suppressing or gender affirming hormones from unregulated sources or from on-line providers that are not regulated by UK regulatory bodies. In such cases, GPs and local health professionals are advised to consider what safeguarding protocols may be appropriate for the individual child or young person’s wider circumstances including the extent to which the parents / carers are able to protect or safeguard the child or young person. Safeguarding procedures may be necessary regardless of the endeavours and best intentions of the parents / carers in reducing risk of harm. Safeguarding protocols should be initiated immediately where the child or young person is at risk of immediate, serious harm. It would also be important for the GP or local health professional to explore what regulatory bodies may need to be informed if healthcare professionals registered with a UK professional body are prescribing medication contrary to NHS protocols.

Download the referral form and risk assessment form
Please save a local copy of the referral form before completing. You can save this form and come back to it later to complete if you need to gather further information.

For all referrals, please also complete the separate risk assessment form and send both to the above email address.

• Download the referral form (DOCX format, 138Kb)
• Download the risk assessment form (DOCX format, 120Kb)

Further guidance for healthcare professionals

• RCGP: Transgender Care
• RCPsych: Supporting transgender and gender-diverse people
• BPS: Guidelines for Psychologists Working with Gender, Sexuality and Relationship Diversity
• NSPCC: Gender identity; Advice to help you understand what gender identity is and how to support a child
• MindEd: Catalogue of resources.

How do I get my details (email, address, etc) updated?
If your circumstances have changed, please get in touch with us by email agem.cyp-gnrss@nhs.net and we can update the information on our system.

If your email address has changed then please contact us on agem.cyp-gnrss@nhs.net.

Why are all these changes being made to CYP Gender Incongruence services?
In recent years, the former service managed by the Tavistock and Portman NHS Foundation has struggled to cope with the number of young people being referred for the service. This has led to long waiting times that have increased the anxiety and distress felt by young people and their families. To address this problem, the NHS in England and Wales is making a number of important changes.

Further information on the changes can be found at NHS commissioning » Implementing advice from the Cass Review (england.nhs.uk) and at Cass Review – Independent Review of Gender Identity Services for Children and Young People.

Can you tell me where I am in the waiting list and how long I will have to wait to be seen?
Unfortunately, we cannot provide individual information on where you are in the waiting list. We have your referral information held on file, however as the new Children and Young People’s Gender Incongruence Services are still establishing their services it is difficult to give an accurate date at this stage. 

Can my child be seen sooner?
Patients will be seen in date order, with longest waiters being seen first. This is to be fair to all patients on the waiting list. If you need support for distress, please speak to your GP or referrer who may be able to refer you to Children and Young People’s Mental Health Services.

Further support groups can be found on the page called “Where to get support while you wait”.

What if I turn 17 while I am on your waiting list?
If you reach the age of 17 years while on this waiting list, we will send you and your referrer a letter confirming that your referral to the Children and Young People Service will be closed, and advising you to discuss with your GP whether a referral to an Adult Gender Dysphoria Clinic is appropriate for you. If you decide to seek a referral to an adult clinic, your GP should make the referral to the clinic of your choice, and the Adult Gender Dysphoria Clinic will honour your original referral date, and take into account the time that you have waited within Children and Young People’s Gender Incongruence Services.

I have not received the Gender Experience Summary (GES) yet – should I contact you?
We are processing referrals in date order and are writing to patients to complete the GES.

• Don’t contact us if:
  
  • You received a letter from us and are under the age of 17 and your email address matches that in the letter you received. In this case we will contact you no later than 31st October 2023 to complete the GES.
    
    
• Do contact us if:
  
  • You haven’t received a letter from us by 31 October 2023.
  • Your email address doesn’t match that on the letter you received

The GES will be sent to you by email for you to complete online in our system. If you find this difficult or need help completing it, then please contact us on agem.cyp-gnrss@nhs.net. The team will be able to send you the GES in an electronic format to complete on your computer or a paper version or to arrange an appointment to complete the GES with one of our team.

Is it mandatory to complete the GES?
While it isn’t mandatory to complete the GES, sending more up to date information may help to avoid any delays in the processing of your assessment.

I no longer wish to be seen by Children and Young People’s Gender Incongruence Services, what do I do?
If you no longer wish to be seen by Children and Young People’s Gender Incongruence Services, then please contact us on agem.cyp-gnrss@nhs.net to request that you are removed from the list.

What happens if I change my mind after coming off the list?
We will require a new referral from your GP, and your referral date will be recorded as the date of the new referral.

Is it safe to take puberty blockers or hormones before I am seen by the new service?
No. Unregulated medicines can have potentially dangerous short and long term side effects; and even prescription drugs can be dangerous unless prescribed by, and managed by, an experienced and appropriately trained healthcare professional.

The NHS is currently proposing that puberty suppressing hormones (puberty blockers) as a response to gender incongruence are not routinely available through the NHS outside of a formal research framework because of the limited evidence about risks, benefits and harms.

Children, young people and their families are strongly discouraged from sourcing puberty suppressing hormones or gender affirming hormones from unregulated sources (such as the internet) or from on-line providers that are not regulated by UK health regulators (Care Quality Commission in England or Healthcare Inspectorate Wales). In such cases, GPs may conclude that safeguarding procedures may be necessary.

If you need to let us know about changes to your referral details please contact us at agem.cyp-gnrss@nhs.net.

We are unable to offer clinical advice to children, young people or their families and if support and advice is required please contact your GP or other local NHS services.

If it’s an emergency or you need urgent help:

If you or someone else is in danger, call 999 or go to A&E.