NICE Consultation on Gender incongruence services for children and young people. Deadline 2nd April.

[StillSpartacus]

This is in development with an expected publication date of December. NICE have a current consultation asking for the 5 key areas of quality improvement which could have the greatest potential to improve the quality of care.

I have only been able to look at it briefly and will study it in more detail later tonight. As the closing date for comments is April 2nd though, I wanted to bring it to everyone's attention sooner rather than later.

It appears that individuals can comment as responders, but that organisations need to be registered as stakeholders. Stakeholders can include national charities that represent people using services, carers and the public. I am hoping that Sex Matters will qualify.

The links are below.

Main Page
Consultation | Gender Incongruence Services for Children and Young People | Quality standards | NICE

Project Documents
Project documents | Gender Incongruence Services for Children and Young People | Quality standards | NICE

Consultation
Project documents | Gender Incongruence Services for Children and Young People | Quality standards | NICE

They want to know the key areas for quality improvement, why this is a key area, data sources for these and supporting information.

From my brief, but frustrating look at the Equality impact assessment, I have already picked out the issues below, and am sure there is more to add with additional scrutiny.

Equality and Impact Assessment
Gender reassignment
Long waiting lists may delay access to the NHS CYP Gender Service for some people with this protected characteristic.
What protected characteristic? These are people below age 18.
Pregnancy and maternity
No issues identified at this stage.
Maybe apply some critical thinking?
Religion or belief
No issues identified at this stage.
What about religious opposition to same sex relationships?
Sexual orientation:
No issues identified at this stage.
Seriously?

Do you have representation from stakeholder groups that can help to explore equality and health inequalities issues during the topic engagement process including groups who are known to be affected by these issues? If not, what plans are in place to address gaps in the stakeholder list?
As there is no NICE guideline for this topic, a new stakeholder list has been compiled. Initially, this comprised of ‘core’ stakeholders. These are organisations that are contacted for the development of all quality standards and guidelines. It includes organisations that can help explore equality and health inequalities issues.
OK - but Who are these core stakeholders?

I am very keen to make sure that this isn't waved through without proper scrutiny from knowledgeable, objective organisations and experts. As well as many of us responding as individuals, can we put together an FWR action list to maximise our contributions?

Off the top of my head, could we start with:

• Names of organisations that might be stakeholders to make sure they are aware of the consultation. Can anyone who has any insider contacts also do their best to share the info? I am happy to email organisations, but appreciate that emails to busy, volunteer led groups often get missed so any personal contacts would be a bonus.
• Suggestions for the key areas for QI. Honesty rather than affirmation would be high up on my list, as would exploring other causes of distress and acknowledging normal pubertal experiences, not attributing clinical significance.
• Any other ideas?

Thanks in advance for your help everyone.

Bump for more eyes on this!

Core stakeholders will be the Department of Health, individual health trusts/boards, NHS England/Wales/Scotland and HSNI, King's Fund, the bodies that took over from Public Health England (forget their names, there are 2 of them). Probably a few more, but that's the type of body.

While the Equality impact form could certainly do with more detail, you have no idea how delighted I am to see that both lists 'sex' not 'gender' as one of the protected characteristics.

I spent years correcting that, on this specific form, every time a copy came across my desk.

[Too late to edit typo in first post - HSCNI, not HSNI]

Done.

Do you think it includes stonewall and mermaids et al though?

Last time I looked even the Kings Fund was captured and I’m afraid I just don’t trust the usual suspects. I’m imagining the priorities will be focused on transpeople’s rights to treatment taking precedence over children’s rights to grow up in healthy bodies.

StillSpartacus re this from your OP:

Gender reassignment
Long waiting lists may delay access to the NHS CYP Gender Service for some people with this protected characteristic.
What protected characteristic? These are people below age 18.

I don't think being under 18 has any impact on whether someone has the protected characteristic of gender reassignment. They can't get a GRC until they are 18 but that's an entirely different thing.

Hmm do you think so? I would question how someone under 18 can consent, even if their reassignment doesn’t involve medic treatment. Happy to be corrected though and it’s an important point to be right on.

Core stakeholders are those asked to comment on everything NICE produces guidance on - smoking, diabetes, arthritis, cancer guidelines, the lot. It wouldn't include Mermaids any more than it would the British Heart Foundation.

The Equality Act gender reassignment characteristic includes those who have undergone, are undergoing or are proposing to undergo reassignment. Under 18s can propose to do it in future (and until very recently could be on puberty blockers or cross sex hormones).

The definition of reassignment also says it includes processes to change physiological or other characteristics of sex. 'Other' is not defined - it could be a change of name and demanded pronouns.

[Gah, missed that ProfessorBinturong said this just above me, sorry!] Since the protected characteristic of GR protects even those who are proposing to undergo a process of blah blah, with no time limit, and since the process doesn't have to include any physical changes, I think even a 5yo who says "when I'm grown up I will change my name [to one usually belonging to the other sex]" is likely covered!

Thanks for sharing @StillSpartacus Please keep us posted on any updates.

In case it’s useful - a note from the NICE website about their purpose

NICE helps practitioners and commissioners get the best care to people, fast, while ensuring value for the taxpayer.

We do this by producing useful and usable guidance for health and care practitioners, which includes rigorous, independent assessment of complex evidence for new health technologies. We develop recommendations that focus on what matters most and drive innovation into the hands of health and care practitioners.

From NICE guidance generally:

All problems (adverse events) related to a medicine or medical device used for treatment or in a procedure should be reported to the Medicines and Healthcare products Regulatory Agency using the Yellow Card Scheme.

Stakeholders will include patient charities, and there’s usually a published list of those invited in the draft scope. They’ll also involve patient advocates. This could be a good moment to alert any patients who are speaking out against reassignment, because there will certainly be patients participating who support it.

Also the NICE commitments to environmental sustainability.

We’ve included an environmental sustainability domain in our new NICE-wide topic prioritisation framework. This will ensure that environmental considerations feed into our process for identifying and prioritising new guidance topics and updates to existing NICE guidance.

IMO creating life long patients and pollution potential of synthetic hormones may not be entirely compatible with these aims

Is there any way of seeing who the stakeholders are? It must be publicly available information.

Bumping this up as the deadline is this week.

Thank you. I’ve had a busy weekend with family stuff, so I’m hoping to respond after work tomorrow.