Monday 18 January update

Permission granted to appeal High Court judgment on consent for puberty-blocking treatment

The Tavistock and Portman NHS Trust, which leads the national Gender Identity and Development Service (GIDS), has today (Monday 18 January) been granted permission by the court to appeal against the ruling, alongside University College Hospitals NHS Foundation Trust and Leeds Teaching Hospitals NHS Trust, whose paediatric endocrinologists prescribe and administer puberty-blocking drugs on behalf of GIDS. 

Read more about the appeal.

Information following the Judicial Review judgment, updated January 2021

The Trust was disappointed by the judgment on 1 December 2020 (read the full judgment on the judiciary.uk website) and we understand that the outcome was unsettling news for patients and their families. Our first duty is to our patients, particularly those currently receiving hormone blocking treatment and we are working with our partners, University College London Hospitals NHS Foundation Trust and Leeds Teaching Hospitals NHS Trust, to provide support for patients concerned about the impact on their care.

For existing patients please be reassured: there are no immediate plans to stop your treatment with puberty blockers or cross sex hormones.

The Court ruled that there will be a stay on implementation of its judgment until the determination of the appeal we have lodged. In January 2021 the Trust, together with University College London Hospitals NHS Foundation Trust and Leeds Teaching Hospitals NHS Trust, had permission to appeal granted.

This will give us a chance to work through the specific implications of the judgment for different patient groups with our partners, University College London Hospitals NHS Foundation Trust and Leeds Teaching Hospitals Trust. We will not be making new referrals to endocrinology until we have more clarity and future referrals will require a court order for under-16s.

The Trust confirms its ongoing support for the review commissioned by NHS England being led by Dr Hilary Cass.

We understand that our patients and their families are likely to have lots of questions in the wake of this judgment. Below we have prepared a Q&A which will attempt to address some of the key questions we expect you may have. We will update these answers as soon as we know more, and recommend that if you have further questions, to check this page in the coming days for further updates.

Please note the ruling does not affect those over 18.

Contact information for patients, parents/guardians, and patients on our waiting list

If you are a patient or parent/guardian of a patient on our waiting list and have a query you can use the below contact details:

We will answer as many calls as we can, but ask that you please email in the first instance if you can.

Should you or a young person need urgent medical attention, we strongly suggest that you get in touch with your local Child and Adolescent Mental Health or emergency services, who will be best placed to respond.

If you are a member of the press, please email communications@tavi-port.nhs.uk.

Answers to common questions following the judgment

What will happen to my treatment?

Read or download a letter that has been sent following the judgment to those service users who are currently in endocrine treatment.

We would like to reassure those already in treatment in our endocrinology clinics at Leeds Teaching Hospitals NHS Trust and University College London Hospitals NHS Foundation Trust that we are working together to ensure there will be no interruption to your treatment while we put in place a new system for accessing physical interventions. We have had to reschedule some appointments to allow for some critical planning work to happen, but this does not mean anyone is being discharged. All those with scheduled endocrinology appointments will be contacted in due course and individual plans made.

The University College London Hospitals / Leeds Teaching Hospitals teams and the Gender Identity Development Service at the Tavistock and Portman will conduct clinical reviews of current endocrinology cases, working with young people and their parents/carers to make sure they fully understand the treatment. These clinical reviews will start in early 2021 and patients will be contacted directly to arrange these in due course.

The purpose of the clinical review is for us to decide, together with patients, whether a continuation of puberty blockers is in their “best interests”. If that is what we conclude, and if patients and carers agree with that conclusion, we will apply to the Court to obtain best interests assessments about the continuation of treatment.

Patients will continue to receive their medication until the outcome of this application to the Court is known. This has been agreed with NHS England and we are seeking a further stay on the judgement to cover this specific cohort of patients. It is expected that GPs will continue to prescribe to this cohort. If you have any questions about this, please contact us directly.

How does GIDS support young people and their families?

It is important to remember that GIDS is, and has always been, primarily a psycho-social service providing extensive support to children and young people facing issues pertaining to the development of their gender identity. This psycho-social support provided to children and young people will remain of the upmost importance, even more so in times of uncertainty about future treatment options. Our focus remains to support patients in the best way we can.

We offer a safe and supportive environment for children and young people to explore these issues. Even before this judgment, only a minority of those referred to the service progressed on to a physical intervention pathway. We are confident that GIDS can continue to be a source of great support to you. Where appropriate, we may also liaise with local services and support you in getting any additional help you may need.

Have you stopped making new referrals to endocrinology services?

Due to the direction of the Court and the need to prioritise our existing endocrinology patients in seeking best interests assessments, for the time being, we have decided not to make any new referrals to endocrinology.

Will new referrals happen in future?

Access to physical treatment may be available to our patients in the future following an application to court for a ‘best interest’ order. We must prioritise those patients already in the care of our endocrinology clinics before taking on new endocrinology patients.

I am currently on puberty blockers – what happens next?

The University College London Hospitals / Leeds Teaching Hospitals teams and the Gender Identity Development Service at the Tavistock and Portman will conduct clinical reviews of current endocrinology cases, working with you and your parents/carers to make sure you all fully understand the treatment. These clinical reviews will start in early 2021 and you will be contacted directly to arrange these in due course.

The purpose of the clinical review is for us to decide, together with you, whether a continuation of puberty blockers is in your “best interests”. If that is what we conclude, and if you agree, we will apply to the Court to obtain best interests assessments about the continuation of treatment. You should by now have received a letter letting you know you will continue to receive your medication until the outcome of this application to the Court is known. This has been agreed with NHS England and we are seeking a further stay on the judgement to cover existing endocrinology patients. It is expected that GPs will continue to prescribe to this cohort. If you have any questions about this, please contact us directly.

Alternatively, if you do not want to continue with puberty blockers, or if we decide through our clinical review with you that it is not in your best interest to continue with puberty blockers, we will agree a timeframe for withdrawing medication in a clinically safe way without the need for a Court order. In this case, medication will not be stopped immediately but will be withdrawn in the safest possible way.

I am currently on gender-affirming hormones – what happens next?

The Court ruled that young people who are aged 16 or 17 years are more likely to be able to give informed consent, because they are more likely to understand the issues. Therefore, a Court order may not be necessary for you to continue to receive puberty blockers or cross sex hormones.

We will still carry out a clinical review of your case, working with you and your parents/carers to make sure that you all fully understand the treatment. If there is any doubt between us about what is in your best interests, we will consider an application to the Court for a best interests order. Again, your medication will continue until the outcome of this application to the Court is known.

I am currently on puberty blockers from a private provider – what happens next?

This judgment applies to the treatment, not to the provider. This means that all providers, public and private, are bound by it. This includes puberty blocking medication administered in England and Wales.

If my puberty blockers from GIDS are stopped, can I access them via private providers?

You should by now have received a letter letting you know you will continue to receive your medication until the outcome of this application to the Court is known. This has been agreed with NHS England and we are seeking a further stay on the judgement to cover existing endocrinology patients. It is expected that GPs will continue to prescribe to this cohort. If you have any questions about this, please contact us directly.

I am on puberty blockers and have been discussing accessing gender-affirming hormones with my clinicians – will those still be available to me?

The Court ruled that young people who are aged 16 or 17 years are more likely to be able to give informed consent, because they are more likely to understand the issues. Therefore, a Court order may not be necessary for you to continue to receive puberty blockers or cross sex hormones.

We will still carry out a clinical review of your case, working with you and your parents/carers to make sure that you all fully understand the treatment. If there is any doubt between us about what is in your best interests, we will consider an application to the Court for a best interests order. Again, your medication will continue until the outcome of this application to the Court is known.

GIDS will provide psycho-social support throughout this process and beyond and you will not be discharged from the service unless you wish to be. We will keep updating the information on this page as we know more.

I am completing my assessment at GIDS and we have discussed a referral to the endocrinology team for blockers. What happens next?

While we work through the specific implications of the judgment for different patient groups with our commissioners, NHS England, we need to pause new referrals to endocrinology. We also need to prioritise seeking best interest orders for existing endocrinology patients before referring new ones. We will update this information as soon as we know more, so do check back periodically. Your psycho-social clinicians are here to support you through this period of uncertainty.

While referrals to the endocrinology team may be paused for the time being, it does not mean that you will be discharged from GIDS, or that you will never be able to access hormone blockers via GIDS. There will be the possibility of seeking a best interest order from the Court to enable you to access physical interventions, as well as the possibility this judgment may be overturned on appeal. However, we must manage expectations and prioritise patients already in treatment.

I am 16 or 17 – what does the judicial review judgment mean for me?

As the High Court confirmed and as is reflected in NHS England's revised specification there is a presumption that 16 and 17-year olds have the ability to consent to medical treatment. However, the judgment also highlighted that clinicians might want to seek authorisation from a court if there is doubt about someone’s ability to consent. In light of this, and to continue supporting our patients, we are taking the step of reviewing each current 16 and 17 year-old patient’s needs, to assess whether the treatment they are on continues to be recommended. In circumstances where capacity is in doubt, and/or where there is any uncertainty as to what is in the patient’s best interests, the lead clinician will need to consider an application to Court to determine those issues.

What are the practical implications?

To make sure we can provide the best support to current patients we have currently paused referrals to endocrine services for all young people, both under 16s and those aged 16 and 17, while we work with our partners (University College Hospitals NHS Foundation Trust and Leeds Teaching Hospitals NHS Trust) and patients to develop a clear process for conducting the necessary clinical reviews and, where appropriate, make applications to the Court. We expect to complete the careful planning that is under way for the clinical review process and to start the reviews shortly.

Our first and foremost consideration is the well-being of our patients and their families. We understand that this is an unsettling time for them, and we want to reassure them that we will continue to offer psychosocial support throughout this period. In addition, where patients are already receiving treatment with puberty blockers or cross sex hormones, there are no plans to stop this ahead of any Court decision that may be required.

I am a GP – should I continue to prescribe puberty blockers and cross-sex hormones?

Access to medication will not be automatically withdrawn. The University College London Hospitals / Leeds Teaching Hospitals teams and the Gender Identity Development Service at the Tavistock and Portman will conduct clinical reviews of current endocrinology cases, working with young people and their parents/carers to make sure they fully understand the treatment. These clinical reviews will start in early 2021 and patients will be contacted directly to arrange these in due course.

The purpose of the clinical review is for us to decide, together with patients, whether a continuation of puberty blockers is in their “best interests”. If that is what we conclude, and if patients and carers agree with that conclusion, we will apply to the Court to obtain best interests assessments about the continuation of treatment. We have let patients know that they will continue to receive their medication until the outcome of this application to the Court is known. This has been agreed with NHS England and we are seeking a further stay on the judgement to cover this specific cohort of patients for this specific purpose. It is expected that GPs will continue to prescribe to this cohort. If you have any questions about this, please contact your referring endocrinology clinic directly.

When do these new rules start?

The judgment and new specifications do not stipulate that any existing treatment must be automatically stopped. The Court has ruled that there will be a stay on implementation of its judgment until the determination of the appeal we have lodged, but the pause on new referrals will continue.

As well as seeking to overturn this judgment, we are preparing for its implementation to ensure that treatment need not be interrupted for existing patients and we can start once again referring patients to our endocrinology clinics. As per the NHS England service specification revisions, the treatment process will involve an application for a best interests order from the court before a referral to endocrinology can be made.

GIDS will provide psycho-social support throughout this process and beyond.

My child has become distressed as a result of the judgment. Where can they and I access support?

If you are a patient or parent/guardian of a patient on our waiting list and have a query you can use the below contact details:

We will answer as many calls as we can but ask that you please email in the first instance if possible.

If you are currently being supported by your GP, a Children and Young People’s Mental Health Service, a paediatric or medical team or Children’s Social Care, then talk to them about your feelings and worries. It may help to show them this letter. These professionals are also very welcome to contact either our team or the Tavistock for further advice in how best they can help you

Otherwise, we recommend discussing any concerns your child has at their next scheduled GIDS appointment.

We need help now, who can I contact?

Your local mental health services will have a 24/7 crisis line that you can call.

Search for the name of your local area AND CAMHS mental health crisis number and your local number should come up.

The NHS is here to support you and your family. If you want to talk to someone, help is here for you:

If you need urgent mental health support or advice, please head to: https://nhs.uk/urgentmentalhealth

This website can tell you which NHS organisations can help you in your area, including 24/7 crisis support, or you can text SHOUT to 85258

If you are currently being supported by your GP, a Children and Young People’s Mental Health Service, a paediatric or medical team or Children’s Social Care, then talk to them about your feelings and worries. These professionals are also very welcome to contact either our team or the Tavistock for further advice in how best they can help you.

You may also wish to access support from local trans groups and charities.

Who can I speak to for more information?

This web page is where we will keep up to date information with regards to the impact of the judicial review judgment on the care we are able to provide. Do check back in periodically for updates. You may also wish to speak to charitable groups in your local area. You can find a list of them here https://gids.nhs.uk/talking-other-people