Trans care becomes national highly specialized care

What is national highly specialized care?

The goal of national highly specialized care (NHV) is that care should be of higher quality and be more equal, regardless of where in the country you live. In order to carry out national highly specialized care, the regions must apply for and be granted a special permit from the National Board of Health and Welfare. Ongoing evaluation of care and research is also an important part. You can read more about what national highly specialized care is at the National Board of Health and Welfare.

Why does the National Board of Health and Welfare want gender-affirming care to be national highly specialized care?

There have been, and still are, significant problems with gender-affirming care. The National Board of Health and Welfare now wants to deal with these by making gender-affirming care a national highly specialized care.

Care is unequal across the country. The National Board of Health and Welfare already stated this in a report in 2010 and again in a follow-up of the knowledge support for care in the case of gender dysphoria in 2016. The staff in gender-affirming care share the picture of the problem. The fact that care looks different depending on where in the country you live is something that even we at RFSL and RFSL Ungdom have highlighted for a long time. Among other things, this applies to waiting times, referral rules, staff knowledge and access to treatments and aids.

The mission will also be to follow up how care recipients feel and assess their quality of life after assessment and possible treatment, something that today’s gender dysphoria teams find it difficult to do due to limited resources. That follow-up becomes part of the mission makes it possible to evaluate and improve care more systematically than today.

The units that receive permission to conduct national highly specialized care must also conduct research. There is already a national quality register, the Gender Dysphoria Register, which, among other things, records the same measures and results that the teams must report to the National Board of Health and Welfare annually. But now the units must have a clearer research mission. There will therefore be much better conditions for conducting research in the future.

Which parts of gender-affirming care will become national highly specialized care?

Gender dysphoria assessments and certain gender affirming treatments will become national highly specialized care. The gender-affirming treatments covered by the national highly specialized care permit are gender-affirming genital surgery for adults and vocal cord surgery (to raise the voice pitch) for adults. These procedures must therefore only take place at the new units.

The treatments that are not included in the decision are mastectomy (surgery where breast tissue is removed), breast augmentation, hair removal, removal of ovaries, fallopian tubes and/or uterus, prescription of aids such as breast prostheses, wigs and penile prostheses as well as fertility preservation measures (which above all usually involve that you save gem cells: eggs and sperm respectively). These parts of the care will instead be available locally. Gender-affirming hormone treatment is started at the national teams, while continued treatment will be handled by endocrinologists and gynaecologists in one’s home region. Voice training begins at the units and can then continue with a speech therapist (voice specialist) locally. The endocrinologists, gynaecologists and speech therapists who provide continued treatment must have close cooperation with the national units.

There are gender-affirming treatments that are not specifically mentioned in the decision or in the basis for the decision. These include grinding the larynx (surgically reducing the “Adam’s apple”), removing only the testicles without creating a vulva and vagina, and vaginectomy (surgically removing the vagina). We do not know whether these procedures will be counted as belonging to the conditions for vocal cord surgery or gender-affirming genital surgery. But we see nothing to indicate that you should not be able to receive these treatments if you need them.

Which units have been selected?

Three units have been selected to be responsible for the highly specialized care. These must also be supported by their own subcontractor, which is based in places where gender-affirming care is currently provided. The units that will perform the national highly specialized care are:

Anova (Stockholm) with Uppsala as subcontractor.

Lundströmmottningen (Västra Götaland) with Umeå as subcontractor.

Linköping (Östergötland) with Malmö/Lund as subcontractor.

Why these particular teams?

Part of the gender-affirming treatment to be carried out within the framework of National highly specialized care is genital surgery. Today, there are only three regions where gender-affirming genital surgery is performed, and therefore the three teams have become responsible.

Why was it now decided on subcontractors when the original decision was that three units would be responsible for NHV?

There are still three units that will be responsible for care. At the same time, there is an under-capacity within the entire gender-affirming care already today. Therefore, it is important to make use of all the research resources and expertise available. The National Board of Health and Welfare has developed this model precisely to strike a balance between, on the one hand, having a concentrated responsibility for the patient group, for research, for the supply of skills and for the development of care, and on the other hand, a continued geographical spread of providers, maintaining the available capacity. Together, the National Board of Health and Welfare hopes that they create the best conditions for expanding both the quality and capacity of care in order to reduce care queues in the long term.

What is the difference between national highly specialized care and a subcontractor?

According to the National Board of Health and Welfare’s decision, only three teams can be given responsibility for the national highly specialized care. These can then have a subcontractor who can carry out part of the assessment, and treatment given within the framework of the NHV team’s responsibility.

We currently do not know exactly what the design of and the distribution between a responsible team and a subcontractor looks like. RFSL is awaiting the publication of the documents from the board meeting to find out more.

Does this affect gender-affirming care for children, youth and adults?

Yes. The National Board of Health and Welfare is clear that the teams responsible for the national highly specialized care must be able to assess and treat children, youth and adults. This means that the locations that previously had a team for children and youth and a team for adults will in future only have a team for all ages, which facilitates the transition from child and youth care to adult care.

It is still unclear to RFSL whether all subcontractors must also be able to assess and treat all age groups. RFSL is awaiting the publication of the documents from the board meeting to find out more.

Will the teams get more staff?

As a result of the decision on national highly specialized care, the teams will need more staff to complete the mission. The transition to national highly specialized care means that the demands on what a team must be able to carry out increase. One of the requirements is that they work for a good supply of knowledge-raising. The regions that applied to be responsible for national highly specialized care have also taken responsibility for increasing the quality and availability of care. The National Board of Health and Welfare will follow up annually if the teams live up to the requirements, and one of the criteria they will follow is how long a patient has to wait for care. To cope with all this, the teams will need to recruit more staff.

Will it change the content of care?

The recommendations for the content of care have not changed. The National Board of Health and Welfare already has knowledge support for care for gender dysphoria. They contain recommendations for how care should be conducted. The knowledge support does not change in connection with this decision and the care will therefore largely continue in the same way.

At the same time, the transition to national highly specialized care means certain changes in care. The teams responsible for national highly specialized care must now begin joint work to make care more equal across the country. This means that the differences between the various teams’ investigations, assessments and treatments should decrease in the long term. All the responsible teams must also conduct research and systematically follow up on their care. All in all, this can lead to increasing the quality of care in the long run.

RFSL has long demanded care that is more equal, regardless of where in the country you live, and with better follow-up. We will therefore closely follow how the responsible teams design their extended quality-raising work, and work to ensure that care is of better quality and more equal for everyone.

What happens to my queue time?

Those who are waiting to start an investigation or who are already undergoing an assessment will be allowed to start or complete their assessment. According to the information RFSL received from the National Board of Health and Welfare, no one should lose their place in the queue or have to redo parts of their assessment due to the changes. Those of you who are considering seeking gender-affirming care do not have to wait to do so until the new structure is in place.

However, it is too early to say exactly how the transition to national highly specialized care will affect waiting times in the short term. The teams that now become part of the national highly specialized care need to jointly decide how the issue of waiting times is handled. RFSL has worked for a long time to reduce queue times. We will follow the issue carefully and work to make the queues shorter.

My team becomes a subcontractor. Will it affect my care?

Those who are waiting to start an assessment, already undergoing an assessment or receiving treatment will be allowed to start or complete their assessment or treatment. According to the information RFSL received from the National Board of Health and Welfare, no one should lose their place in the queue or have to redo parts of their assessment due to the changes.
RFSL does not yet fully know what the distribution between NHV responsible teams and subcontractors looks like, but the indication we have received so far is that both responsible teams and subcontractors can conduct assessment activities, which is the most extensive part of the care chain. Here, RFSL needs to wait for the publication of the documents from the committee meeting to find out more.

Could this lead to a greater financial burden for private individuals? (with travel, accommodation, lost income etc.)

Since many of the assessment teams that exist today will continue their activities, either as NHV responsible teams or subcontractors, the travel routes will not increase in this way. It has been one of RFSL’s concerns when the National Board of Health and Welfare first made the decision that only three teams would be responsible for providing care.

At the same time, RFSL does not yet fully know what the distribution between NHV-responsible teams and subcontractors looks like, but the indication we have received so far is that both responsible teams and subcontractors can carry out assessment activities, which is the most extensive part of the care chain. RFSL is awaiting the publication of the documents from the board meeting to find out more.

Will I be able to choose a team?

This is unclear to RFSL at the moment. We have asked the National Board of Health and Welfare whether the free choice of care will continue to apply within the framework of national highly specialized care and they have asked to get back to us. We will update this answer after we receive a response from the National Board of Health and Welfare.

When does the system of national highly specialized care come into force?

The transition to national highly specialized care will take place on January 1, 2024. The three teams that will be responsible for national highly specialized care have a lot of preparatory work to do between themselves and together with their subcontractors before the transition.

At the same time that the teams carry out their work with national highly specialized care, the gender-affirming care will continue.

Is there anything positive about national highly specialized care?

We see that there are several positive changes with trans care now becoming national highly specialized care:

• That all teams must treat both children and adults facilitates the transition between child and adult care.
• National highly specialized care provides better conditions for long-term follow-up of patients. In this way, you can e.g. follow both mental and physical health over time.
• There will be better opportunities for research, which RFSL has been asking for for several years.
• Care will become more equal, regardless of where in the country you live.
• Sometimes primary care does its own “gender dysphoria assessments”. This is despite lacking the specialist skills required to assess and diagnose gender dysphoria. By making care for gender dysphoria a national highly specialized care, such “assessments” can be prevented

However, one of the most important issues for RFSL is that the queue times should be shorter, and it is still too early to say how this will affect the queues in the short term.

What does RFSL think?

Initially, RFSL was mainly concerned that the changeover to national highly specialized care would mean that there would be fewer teams, which in turn would lead to some having to travel long distances, both the person receiving care and for relatives. We also had a concern about the capacity in case there were fewer providers, as this could make the important work of shortening care queues more difficult. As it stands today, however, this will not be the case, which we are happy about.

RFSL will continue to have a dialogue with staff within the gender-affirming care, politicians and authorities. We will also monitor the development of care. It is important that care is equal, that waiting times are shorter and that all teams have good skills to deal with both binary and non-binary people with gender dysphoria.

What has RFSL done to improve care?

We have worked hard to ensure that the teams working with trans care today do not disappear or become significantly fewer. RFSL has also been involved in influencing the geographical spread of the teams. A concern that existed when the National Board of Health and Welfare initially came up with the decision to make trans care into national highly specialized care was that, above all, residents in northern Sweden would be far too far from the nearest team. Here, RFSL has been clear to the National Board of Health and Welfare that there must be an even spread across the country, and we are happy that the team in Umeå will continue to be a subcontractor.

Questions?

If you have questions about the organization of care, you can contact your care provider or the National Board of Health and Welfare. You can also read the decision on national highly specialized care in its entirety on the National Board of Health and Welfare’s website.

Do you have questions about gender identity, your rights or what care you can receive? Are you feeling anxious or down? Feel free to contact Transformering, which RFSL and RFSL Ungdom runs. The emails are answered by our experts in trans issues and are aimed at people who are transgender, are thinking about their gender identity, are close to someone transgender or meet transgender people in their work or non-profit involvement. You can be anonymous.

You will also find a lot of information on our website transformering.se, including contact details for today’s investigation team.