NHS England Launch New Equality and Health Inequalities Newsletter

Observant readers will have noticed that I've said little or nothing about NHS England's Equality and Health Inequalities team since April, when the new structures came into being.

Yes, I was critical of the manner in which the team was recruited during the previous year, and how I still think continuity was compromised in that process.

Yes, I've pointed to the inequalities which were being reinforced in the establishment of NHS England, even as the leaders mouthed the right words.

I was perplexed, too, by the virtual radio silence in the last four months, during which time this blog was probably the only place where you could learn anything about the structure of the national Equality and Health Inequalities Team and appointments to it.

On the whole though, I had already decided to grant the new Equality and Health Inequalities team some space in which to get a grip
on their brief.

Breathing space

Any new team requires a bit of space and time to come together, to learn about each other, to establish their processes and objectives, and to start producing outputs (let alone outcomes).

And NHS England has already begun to deliver in some areas, most notably the kind of stakeholder engagement driven by their Patient Voice team.

It was about now that I was beginning to contemplate asking broader questions though.

So I was pleasantly surprised this morning to see a few answers.

Newsletter

The first edition of "Everyone", the Equality and Health Inequalities team's newsletter, has been published today.

In fact, "newsletter" might not be the right term, as the style is more that of a magazine.

Issue one explains the interim equality objectives, which I reported on back in April. There is confirmation that the Equality Delivery System (EDS) is undergoing a refresh and still has an important part in transformation plans. And there are pictures and profiles of the sixteen-strong Equality and Health Inequalities team … many being entirely new names in the sector.

Timely

Such a publication is very timely. Any longer and the silence from the new team would have prompted questions.

A four month interregnum on national Equality governance is something that has to be accepted following such a massive reorganisation of the NHS system in England.

And maybe it's OK to stress patience whilst a group of relative strangers continue to build from scratch.

For now it's OK to learn about personalities and to hear about plans and processes.

So long as nobody forgets that, in the end, this new team will ultimately be measured on the genuine outcomes.

What really changed. For who. And how permanently.

The team marks its inaugural meeting in April with a cake

Charing Cross Team Echoes View On ICD Revision

Earlier today I posted a short item reporting a statement by the heads of two English Gender Identity Clinics, Professor Kevan Wylie and Dr Walter Bouman, confirming their views about how the International Classification of Disease (ICD) should be updated for gender identity diagnoses.

For background see another recent blog.

The position of these two senior clinicians was not surprising, given their involvement in the global consensus-building process led by the World Professional Association for Transgender Health (WPATH). However, this was the first time that two clinical heads had stated the position so succinctly in writing.

Rapid response

No sooner had this morning's blog gone out than I heard from a senior clinician at the Charing Cross Gender Identity Clinic, England's largest.

Dr Stuart Lorimer lamented that it was a shame the letter had only had two signatories. He felt sure his colleagues would want to have had the opportunity to express the same to ILGA, who were gathering the information. They'd simply not been approached.

Another letter

I suggested that there was no reason they couldn't endorse the principles independently. I provided the contact details for ILGA's policy officer and the Charing Cross team went off to agree a suitable letter, to be signed by the chief clinician, Dr James Barrett.

And this is what James' message, addressed to ILGA, says:

Madam,

Following the joint statement of Drs Bouman and Wylie, we would like to make our own position clear regarding gender related diagnoses in the forthcoming ICD-11. As the oldest and largest of the UK’s gender clinics, we find that dealing with the ongoing needs of our sizeable caseload (currently, around 4000 active attendees) keeps us occupied to the extent that we are often less directly involved than we would like to be in global matters such as the ICD-11 discussions in Geneva. This does not, however, mean that we are ignorant of or indifferent to those discussions.

As specialist clinicians dealing with the day-to-day realities of gender treatment, our own collective view is very similar to that of our professional colleagues. We support the renaming of the current F64.0 diagnosis, Transsexualism, to the less contentious Gender Dysphoria, Gender Incongruence or similar. Also, the diagnosis itself should, ideally, remain within the ICD-11 in a category aligned with gender identity, sexual or reproductive conditions rather than that section specifically designated mental health. This would help safeguard future provision of healthcare to gender variant people.

Again, a very clear endorsement of the direction being taken in the consensus process. And I don't doubt that the heads of the other English Gender Identity Services would agree too.

Two UK Gender Clinic Heads Make Clear Their Policy Position on ICD-11

"We are both of the opinion that the diagnosis of transsexualism (F64.0) should be removed from the mental health chapter of the forthcoming ICD-11 and that the terminology which describes this condition should be changed to gender dypshoria or gender incongruence, or another more neutral term. "

That is the clear policy position being expressed by the clinical heads of two of England's Gender Identity Clinics, Kevan Wylie and Walter Bouman.

Professor Wylie heads the Porterbrook Clinic gender identity clinic in Sheffield and Dr Bouman heads the Nottingham service.

Their words come in a letter to a policy officer at the International Gay and Lesbian Assocation (ILGA), Sophie Aujean, who is gathering views from european clinical leaders on the revision of the International Classification of Diseases.

They add, "In order to ensure access to treatment and appropriate healthcare for trans people we support inclusion of this condition within the ICD-11, preferably in a separate chapter of sexual-related, gender identity-related and reproductive-related conditions."

This statement does not come as a surprise, since both Kevan Wylie and Walter Bouman have been closely involved with the consensus process being conducted by the World Professional Association for Transgender Health. However, it is the first time any clinicians in England have committed their positions to paper quite so unequivocally.

This will add to expectations of a more than cosmetic change to the underlying precepts in the revised clinical protocols to be determined by the Gender Identity Services Clinical Reference Group, which will begin work shortly. If a broadening clinical consensus agrees with stakeholders that transgender experiences don't belong within mental health classification then it becomes really difficult to continue advocating ways of working which impose unusual conditions on patients seeking hormonal and surgical support to realise their identities.

New Reports On The ICD Revision Process for Trans-Related Diagnoses

In February of this year I reported on an important international meeting, hosted by the World Professional Association for Transgender Health (WPATH).

The meeting in San Francisco brought together clinicians and stakeholders from across the globe to seek a consensus on recommendations to the World Health Organisation, which is currently working towards the first revision of the International Classification of Disease (ICD) in 25 years.

Downloads

WPATH have now released their own formal report on the proceedings, which contains far more detail on the discussions.

The report will be available to WPATH members on the members area of their website and an executive summary has been published on the public-facing side.

However, there doesn't appear to be any restriction on sharing the full report openly; therefore I have arranged that you can download it here.

GATE contribution

The group Global Action for Trans Equality (GATE) also set up a working party of their own on the specific issue of diagnostic categories for children exhibiting 'atypical' gender behaviours.

The question as to whether it is necessary or desirable to have a formal diagnostic category in order to help such children (or, rather, the adults caring for them) was something which completely divided the WPATH meeting in February.

The formal WPATH report contains the various papers which were submitted pro and con … mostly con.

And GATE have now published a separate report on their Buenos Aires working group discussions in April, also arguing strongly against such classification.

I have made the GATE working group report available here.

International dimension

Both the WPATH and GATE activity underline that, in the internet age, there is a far stronger voice from outside of the western first world in debating these topics.

I've commented on this previously in the context of the policy position in Cuba.

This should all be contrasted with the debate surrounding categories in the the US Diagnostic and Statistical Manual (DSM). The DSM is is an almost exclusively North American concern, with the result that mental health categories reflect the way United States culture views human behavioural diversity.

Since transgender medicine has been dominated in the past by western first world cultural ideas about diversity, it will continue to be interesting to see how this plays out in the ICD revision process.

Three Good Reasons Why Government Disability Policy Matters To YOU

You might have heard some stuff in the media about disabled people.

You know the stuff. "Disabled people are claiming too many benefits"

"The Work Capability Assessment is a fair process".

"The country can't afford the benefits bill".

"We're all in this together".

Even if you harbour the suspicion that some or all of this is so much spin, it's not top of your own list of concerns though.

There's paying the mortgage.

There's holding on to your job and making ends meet.

You can't be expected to worry about what happens to a few disabled people, right?

I mean … you're sympathetic and so forth (poor dears). Some of them sound like they're not on the make.

But, it's not your battle, huh?

Three scenarios

Here are some thoughts.

Tonight on their way home from work your husband or wife is hit by a car, breaking their back. They are never going to walk again. Tomorrow you are going to grapple with becoming the sole earner whilst learning to become a carer too. You are going to learn about housing benefit to make up the rent. Your house will be regarded as too big for your needs so you won't get enough. You can't afford to adapt the property so your partner can have some independence. Your partner will be unable to get into that favourite restaurant you both love because the wheelchair won't go up the steps and they are regarded as a hazard for other eaters. ATOS say your partner is fit for work but employers consistently tell them they've not been shortlisted for vacancies. From tomorrow you are going to realise that everyone suddenly looks on you both as burdensome and costly. You come to live with peoples' suspicion that any welfare payments you receive are probably fraudulent.

You don't have a partner?

Tonight whilst settling down with a drink in front of the telly you find you suddenly can't move one side of your body. Your mouth contorts. You try to speak and a strange slurred sound comes out. You can't raise your arm or hold the glass. Fortunately a friend is round and recognises the signs that you are having a stroke. They call 999 and your life and some of your future is saved. Tomorrow you wake up and come to terms with the fact that these symptoms might respond partially to speech and physiotherapy but you are now a disabled person. You can't go back to work. The savings you put aside for buying a house are counted as your living benefits are means tested. Add most of what's described above.

Young, fit? Not at risk of chronic illnesses yet?

Your Father died a while ago and your mother has been living independently on her own. Recently you noticed that she was forgetting things you had just told her. Now you learn from the neighbours that she has been wandering around the local streets without warm clothes and doesn't seem to have been eating. The doctor has informed you today that your mother has Alzheimer's disease and will become progressively less capable and aware. The disease will kill her eventually but she can have five years if looked after well. Your siblings won't hear of Mum going into 'a home'. One of you will have to give up their job to look after her … and the consensus is that that will have to be you. You need to give up your job and become a full time carer. You discover the complexity of claiming benefits to enable you and your mother to survive. You do this job 24/7 for every day of the year. The local authority has no funding left to pay for stand-in 'respite' care so you can have a break. The stress means you become ill yourself.

Someone else's problem?

There is a tendency when we are young and healthy to imagine that disability is something that hits other people. Yet it can visit all of us in the space of 24 hours and seldom goes away.

Disability isn't just something that people are born with. It can arrive in your life through accident, or illness, or simply the result of ageing.

So, when the government is pursuing policies which disabled people say are harmful to their lives shouldn't we be just that little bit more concerned?

Before tomorrow?

Play Disability Policy Bingo

 

The House of Commons is debating today whether the Government should carry out a Cumulative Impact Assessment on how its policies, considered together, affect disabled people.

They won't, of course. They don't need to. They know already full well just how their policies are working.

The debate will act as a reminder of the kind of rhetoric which this government has adopted over the last three years, cynically developing a language which paints vulnerable people as a problem.

For that reason we invite you to play Bingo as you spot the dog whistle terms that trip off Conservative tongues.

Alternative Guide To The New NHS In England

 

The King's Fund, an independent charity working to improve health and health care in England, does a nice line in easy-to-understand multimedia explanations of complex detail

Back in April, they marked the largest reorganisation in the NHS's history with a very creative Prezi, whirling through the history of NHS reorganisations and the history of this one.

And this video provides another really helpful contribution, explaining the complicated way in which the components of the new NHS mesh together.

Ironically, of course, the simplified explanation in this short presentation merely serves to underline what a dogs breakfast the whole thing has now become.

… If that's not an insult to the culinary choices made by dogs