NICE review of child gender transition pathway!

[Kantastic]

I just saw this petition response which mentions NICE are getting involved with a review of child gender services.

petition.parliament.uk/petitions/318025?reveal_response=yes#response-threshold

Stonewall and Gendered Intelligence, are, amazingly, happy about this response, or at least are pretending to be.
twitter.com/Genderintell/status/1286628492420034560

Unsure if they're too thick to realise the implications of an evidence-based review, if they genuinely believe the weight of evidence favours the "affirmative approach" they lobby for, or if they simply realise that arguing with it would be a very bad look - perhaps they are planning to lobby, nobble or otherwise influence NICE (who shouldn't be lobbyable apart from stakeholder consultations, but I don't have much faith in any institutions these days.) Or maybe this is a thing Stonewall/GI to energise their supporters - organise a petition against something no one was considering, present the response as a hard-won victory against oppression.🤔

Anyway the NICE review is excellent news. It's been driving me insane that this hasn't been done. As far as I know it hasn't been done anywhere in the world so the NICE review (assuming no nobbling) will help kids in other countries too.

This is what NICE do when developing guidelines, process described in exhaustive detail.
www.nice.org.uk/process/pmg20/chapter/introduction
If you are involved with an eligible and relevant organisation (eg for parents of ROGD kids or kids with autism) see this link on how to register as a stakeholder and input into this consultation. www.nice.org.uk/Get-Involved/stakeholder-registration

www.nice.org.uk/get-involved/our-committees/what-lay-members-do

This is another pathway to get involved, not as a stakeholder organisation but as an individual with relevant expertise and experience.

This review might be a great opportunity for detrans people to get their voices heard. They are ignored too often.

The NHS England page (Jan 2020) also talks about an independent working group, chaired by Dr Hilary Cass. Do we know who else is in the group? It may well have been covered on here at the time but I can't find the answer. Full wording here -

'The NHS updates nationally commissioned services every few years. In 2016 NHS England put in place a new service specification for gender identity development services for children and young people and committed to conducting a review of this specification and associated policies for 2020.

Gender identity development services help to support young people and their families, and usually include counselling and psychological support, and in some cases can include the prescribing of puberty suppressants and, from around 16, cross-sex hormones.

Independent review of puberty suppressants and cross sex hormones

To support this planned review, an independent expert group is being established to make recommendations on the evidence, that will support a review of puberty suppressants and cross-sex hormones and whether changes are required to existing clinical policies that underpin the use of these on the NHS.

NICE will also undertake a thorough review of the latest clinical evidence to help inform the working group’s review.

Dr Hilary Cass OBE, previously a President of the Royal College of Paediatrics and Child Health, has been appointed to chair the independent group.

Dr Cass said: “This is a fast-developing area of medicine with emerging evidence and high public interest.

“I look forward to chairing this independent group, bringing together medical and non-medical experts with a range of perspectives, to make evidence-based recommendations about the future use of these drugs.”

The working group will be made up of 20 members from a range of clinical and academic backgrounds and will include members of the public. We will provide an update on the full membership shortly.

The review and consideration of the evidence base is expected to complete later in the year.

Full clinical guideline
To inform the review of the wider service specification, we have asked NICE to develop guidance that will help identify when to refer children and young people to specialist services.

The wider service specification for gender identity services for children and young people will reflect the outcomes of both reviews.

Patients, families, experts and interested parties will be invited to comment on a draft specification.'

I think this is excellent news. I’m very pleased to see this:

“To inform the review of the wider service specification, we have asked NICE to develop guidance that will help identify when to refer children and young people to specialist services.“

Mermaids advises everyone who contacts them to ask for a referral to GIDS, “just in case they need it when they get to the top of the waiting list”. If your GP won’t do it, they will. Also, CAMHS often refer immediately if a presenting child has any ‘gender identity issues’, regardless of other problems they may have.

Well this is going to be interesting.

I'm shocked that places like mermaids are allowed to make referrals. They have no clinical expertise whatsoever, it's shockingly beyond their remit to do so. As for stonewall and Co cheering this on, I think it's either because a) opposing this would look terrible and they plan to lobby/bribe/threaten/coherse/stack the board with true believer etc, so that the review draws the "right" conclusion. Or B) they realise the review is going to be damning and are trying to get ahead of the game by pretending like they were on team "evidence based medicine" all along.

I really, really hope that NICE ensure that they get appropriately qualified people onto the panel. I hope the information about who is involved will be accessible.

I think that Stonewall and Gendered Intelligence are happy because they are likely to be involved. They think it will be in their favour and that this will be used to shut up any critics.

I think the NICE guidelines for ME/ chronic fatigue did get quite political so don’t be so sure this can’t be manipulated. Mermaids will have a big day too.

NICE regularly face external pressure from pharmaceutical companies because American insurance companies look at NICE rulings when deciding whether to offer treatments in USA. They are used to pressure groups and patient groups being funded by big pharma but they can also be influenced (to a point) eg. Early on government had to come up with a scheme to ‘risk share’ over Beta-interferon for MS as evidence did not support it’s use but such was the public pressure.

Nice can and have been lobbied before.

I can well imagine Mermaids recommending themselves to be on the panel.

I'm certain that all the usual suspects who self identify as experts in all things will be queuing up to take all the places on that working group. I'd love to be proved wrong but given the current levels of grovelling to those completely unsuited to influence public policy, I'm very sceptical

Mermaids advises everyone who contacts them to ask for a referral to GIDS, “just in case they need it when they get to the top of the waiting list”. If your GP won’t do it, they will.

I had no idea non medical groups such as Mermaids could make direct referrals. I'm really shocked.

Any research going on into the stratospheric increase in referrals needs to start with a simple breakdown of the source of referrals.

The data leak from mermaids last year included emails between mermaids and Gids (iirc between SG and PC) to check patient information leaflets , asking mermaids approval.

This could go either way, couldn't it? If NICE can be captured by Stonewall et al then it will be absolutely disastrous. I guess it will depend very much on who is on the committee and how independent they are.

Or maybe this is a thing Stonewall/GI to energise their supporters - organise a petition against something no one was considering, present the response as a hard-won victory against oppression.

I think this petition is a response to Liz Truss's statement where she talked about "making sure that the under 18s are protected from decisions that they could make, that are irreversible in the future."

It doesn't make Stonewall and GI look very good if they are supporting a petition which appears to be against protecting children.

Bumping because the OPs post are extremely helpful. Yes, NICE can be lobbied and influenced and they are Stonewall Diversity Champions. HUGE red flag.

So I urge everyone who can to get involved as stakeholders via the links the OP posted. Hold people accountable to their remit, not what they have been conditioned into by unaccountable groups.

Ridiculous that non medical group can refer to a medical service. CAMHS won’t even do appointments for kids where I am who are already under their care for Adhd or similar. It can take decade to get them to diagnose asc/Adhd and once they do there’s no help, yet a self appointed charity can refer? That’s disturbing on all levels.

Selection for NICE committees is, IME, a fairly informal process. This works well in non controversial areas. Generally experts in a particular field will get together and invite respected colleagues to join them. Usually the final guidelines are put together over a period of months or years using a wide range of evidence based research and practice.

The problems arise when the experts are all drawn from a very small pool. Add in the issues and biases we know about and there is a risk that the panel will be composed of the usual suspects with no opposition or genuine expertise.

There is also the problems in the NHS that arise from many experts already being over worked and overwhelmed. It is a big ask to go on a NICE panel.

I have seen similar issues in CCGs and Ethics committees. Just as an example, I once submitted an orthopaedic clinical trial protocol to a local Ethics committee. It was scrutinised and approved by a paediatric nurse and a psychiatrist. Hopefully they did talk to some other people. But very few people want to go on ethics committees because it is a lot of work and no pay.

It says NICE (National Institute for Health and Care Excellence) in conjunction with the review detailed above, have been asked to develop guidance that will help identify when to refer children and young people into specialist services.

The lobby will be happy because when this will make recommendations to standardise the way GPs will have to refer the kids in to GIDS, the lobby groups have had long-held concerns about children having long waiting times to access GIDS.

The lobby believes that lack of access, or delayed access, to drugs to transition is harmful to children. They want the NHS to give these to kids, without any long waiting list.

www.dailymail.co.uk/news/article-6448105/British-children-buy-sex-hormone-medication-foreign-sites-no-questions-asked.html

There is a risk in that kids/families will access internet providers for blockers or hormones while there are long waiting times for an NHS appointment and there is an online culture of kids being encouraged into doing that, so objectively I would agree that it has to be better all round that kids are in the NHS pathway and getting expert advice.

However if the government are serious about protecting kids they have to change the law or how it’s implemented so that buying these off label blockers and hormones online carries some kind of penalty, which is enforced, don’t they? And to restrict websites that say medication and surgery is needed to be authentic in your transition, or needed to be happy.

It’s good that GIDS say in this 2018 article that they are doing online consultations with children on the waiting lists to try to help with that- and that was pre COVID-19 so maybe that’s more of a thing now. But the government should also be ensuring that unqualified groups are not encouraging kids into self-medicating.

The absolutely urgent bedrock required for all this though is that the NHS need to invest in prompt talking therapy via CAMHS in order to help kids to deal with the distress they are feeling, with the physically invasive medical side kept to ‘watch and wait‘ with no sanitised twee language about the medical and surgical interventions and all the known risks explained.

GIDS need to be able to avoid adopting the blanket affirmative model that the government’s latest conversion therapy moves could bring in, GMC, BMA and whoever else is relevant need to be lobbying to retain doctors clinical freedom to act in the patients best interests. Being required to affirm is the opposite of that.

internet BASED* providers for blockers or hormones, that should say

I was disappointed with the government's response in light of what Liz Truss said about protecting under 18s. It seems that LT is frightened of upsetting the trans lobby so is deferring any decisions to the findings of the reviews chaired by Dr Cass. When I've previously asked on here when we can expect an update from this independent review, others have advised me that it is unlikely that much information will become public. The web page announcing the review has not changed since January despite saying back then that it will be updated shortly. I'm concerned that this 'review of the evidence' will just be informed by what the transgenderists call 'international best practice', i.e. the guidelines written by WPATH. The last service specification for GIDS based their practise on those guidelines so will it change when updated or will it just adopt WPATHs new guidelines that are expected out this year? Oh and we all know who is helping to write this 'international best practice' for treating children don't we? For anyone that doesn't know her initials are SG.

There seems to be another opportunity to get involved, through the NHS rather than NICE. You can register as a member of the Clinical Reference Group who advise the NHS Programme Board in this area and who will be reviewing Child Gender Services in 2020.

www.england.nhs.uk/commissioning/spec-services/npc-crg/gender-dysphoria-clinical-programme/

If you are a parent, or a detrans person, or a professional who works in this or a related area, this is how you get involved.

www.england.nhs.uk/commissioning/spec-services/get-involved/crg-stake-reg/

To recap there are three separate opportunities to get involved - with NICE as a stakeholder organisation, with NICE in an individual capacity as lay committee member, and with the NHS as a member of a Clinical Reference Group. If anyone is in touch with the detrans advocates please spread the word on this to them! I think their voices really need to be heard here.

(Also note the other Clinical Reference Groups that the NHS are putting together,, they have one for specialised women's services.)

The key thing about NICE consultations is that you can register as a stakeholder - you can be a campaign group to do this, though generally not an individual member of the public. They do not need to clinical based, but anyone who has experience - so parents of children with special needs or desisters would be particularly useful on this. The LGB alliance definitely should be on the case with it too, due to the issue of the Tavistock potentially ignoring homophobic parents. There is good evidence on this thanks to the likes of the Times and Newsnight.

The key thing about NICE consultations is that you can register as a stakeholder - you can be a campaign group to do this, though generally not an individual member of the public...

Individual members of the public do have options! They can apply to be lay committee members with NICE, and they can also apply to be on the NHS Clinical Reference Group. The latter will not input directly into NICE but will input into the government review of child gender identity services.

Dr Cass will have to walk a tightrope and eschew social media of all kinds, as will her chosen team. Even now people will be traveling every word she's ever uploaded, written or recorded for evidence of t*rfdom. If it's found, the routine crucifixion by tweet and howling mob will inevitably follow, complete with threats of rape with barbed-wire-wrapped baseball bat in tasteful pastel colours.

May she be bulletproof and teflon-coated!