Senior Clinicians Express Repeated Concerns About NHS Inequalities

Fourteen years after the McPherson report examined the institutional culture of the Metropolitan Police, and proposed a Public Sector Duty to address racist discrimination, concerns continue to be raised in Britain's public services about institutionalised systems that work against equality.

These concerns apply not only to the Police (the original focus for attention over the death of Stepehn Lawrence) but other public institutions, such as health, education and the judicial system. They also apply top to bottom … affecting everyone from youths on the streets to trained professionals.

Manchester University will be hosting a conference on so-called "disproportionality" at the end of next month.

This is one aspect of embedded systems of discrimination felt particularly among professionals.

Speakers from a variety of fields, including academics, lawyers, police leaders and NHS management will be discussing how phenomena like this operate in different professions.

Growing evidence

The evidence for disproportionality has been growing for some years.

A report published by Professor Uduak Archibong and Dr Aliya Darr of the University of Bradford, entitled "Involvement of Black and Minority Ethnic Staff in NHS Disciplinary Proceedings" examined, in depth, the ways in which NHS clinicians were disproportionately likely to be subjected to disciplinary proceedings if they were from a Black or Minority Ethnic (BME) background, compared to white counterparts doing similar things.

To their credit, the report is hosted for easy access on the NHS Employers web site. On my recommendation to the conference organisers, the Manchester event will include a presentation on the Bradford research team's follow-up work.

And, to underline this phenomenon, the GMC reported at the start of this year "Most struck-off doctors are trained abroad"

The Department of Health recognised that these kinds of phenomena could represent a risk in their Equality Analysis for the new system of Medical Revalidation which was introduced at the end of last year.

Medical revalidation requires doctors to demonstrate periodically that they are still up-to-date and fit to practice. It's like testing commercial pilots or anyone else working in safety-critical fields. Most people are amazed revalidation for Doctors hadn't already existed.

The problem, however, is that wherever there are such necessary systems for appraising or disciplining people, then something about human nature means that there are those who will apply such systems in less than fair and balanced ways.

We recognised this risk too, which is why we pioneered the development of national guidance to help managers recognise and lay plans to mitigate the risks of the revalidation system being applied unfairly. "A Fair Route to Revalidation" isn't 'Political Correctness'; it has been described as one of the clearest guides to operating the revalidation process as a whole.

Safety first

One thing should be made clear when discussing these phenomena. Nobody is suggesting that BME doctors who make mistakes or lack competence should not be scrutinised, appraised or disciplined where necessary.

On the contrary. The concern is that these same standards are not always applied with the same attention and zeal to other doctors.

The research doesn't indicate that one group of doctors is any more likely than another to be inherently poor at what they do … in spite of what tabloids would like the public to believe. However, wider factors can mean that some doctors are obliged to work in circumstances that place them and their patients at greater risk.

BME doctors are more likely than their white counterparts to still be working single handed in general practice. This is a risk factor for any doctor.

Doctors working in deprived areas or minority fields (e.g. treating transsexual patients) are also less likely to have the benefit of a strong professional peer group around them. It is perhaps no accident that both the private practitioners treating transsexual patients have faced almost identical disciplinary proceedings in recent years. Clinicians working in larger teams have the buffer of peer support.

If anything, however, the research suggests the more worrying conclusion that doctors who are perceived to be part of an institution's cultural 'in-group' (i.e. white, British, male, and not openly LGBT) are more likely to have their mistakes and poor behaviours dealt with by 'soft measures', stopping short of formal investigation or disciplinary proceedings. Typically someone will just have a quiet word with them and nothing more will be said.

It has been said, for instance, that if Harold Shipman had been a BME doctor (or a woman) his deeds would have been questioned and investigated far sooner.

Getting to the roots of disproportionally is therefore very much about best practice and safety.

Cultural favouritism

A working culture where capability and disciplinary processes are applied disproportionately is hard to pin down. Like other forms of indirect discrimination it is hard to point any finger in individual cases.

The operation of such a culture can only be inferred from statistical analysis on a bigger group. It is not the kind of thing which usually leads to court cases or tribunals. This is why it is not perhaps widely known about, outside of conferences and academic papers.

A lot of discrimination is like this. And the people practicing these behaviours would probably hotly deny they were discriminating.

Our conference last year, launching "A Fair Route to Revalidation" prompted a lot of discussion when one of the speakers presented a simple analysis clearly demonstrating how, for whatever reason, white clinicians were more likely to figure in the top Clinical Excellence Awards (CEAs) handed out each year.

The intended purpose of CEAs is to recognise and reward those consultants who contribute most towards the delivery of safe and high quality care to patients and to the continuous improvement.

These are subjective criteria to begin with, of course. And you can see how clinicians who are pushed to the margins of any peer group, or work single-handed in general practice, could be overlooked.

In other words, there are obvious cultural and circumstantial factors that could disadvantage individual doctors.

However, this alone is not sufficient to explain the disparity. 38% of NHS Doctors have a BME background. This is a consequence of how, when the NHS was set up, the service needed to bring in so many trained practitioners from the former Commonwealth countries.

Many of those clinicians have by now served for many decades. You would expect them to feature highly in the CEA rankings. But they don't.

This isn't just an academic issue. CEAs are taken into account for those on the NHS's final salary pension scheme. The awards are substantial. So, a disproportionate number of white, male consultants getting awards in their final years of work means a disproportionate number getting a substantial boost to their pensions. Indirect discrimination has direct effects.

Tackling the leaders

This kind of cultural bias is seen across the clinical profession. In December 2010 Professor Rajan Madhok, a GMC Council Member and (then) Medical Director of NHS Manchester wrote to Professor Sir Bruce Keogh (then Medical Director at the Department of Health) to point out the relative absence of BME clinicians in this role. He wrote,

"It was difficult not to notice the lack of BME doctors in the conference Who's Who. This was commented upon by some of my colleagues. I am sure that you will agree with me that this does not portray the ethnic mix amongst NHS clinicians appropriately and does not augur well for the NHS."

In reply Sir Bruce wrote back,

"I have taken on board your comments with regard to the lack of BME Doctor representation in the MD Conference Who's Who booklet and will aim to address this for any future events. I acknowledge that there is a problem in BME representation in medical leadership positions. The Department of Health(DH) is working on increasing access to higher education and in particular medical school. Our DH medical recruitment team regularly look at the impact of ethnicity on success in selection processes. In surgery, for example, the findings only so far demonstrate an effect in those who are BME and non-UK trained - the BME who are UK trained seem to be successful in gaining posts"

Sir Bruce added later in the same letter,

"The National Leadership Council has a work stream on inclusion which is 'redefining leadership in the NHS' to ensure the leaders and the workforce are representative of the communities served, while ensuring that those from minority groups apply and take on leadership roles"

These words all sounds very reassuring, of course. However, Sir Bruce appears to make the classic error of framing the answer around a different question to the one leaders should perhaps be addressing.

Words like this tend to lay the problem at the feet of BME people or other protected groups. It is assumed that the reason why BME doctors are under-represented in the higher echelons is because they are deficient in some way.

"They haven't applied in sufficient numbers". "They need more training". "They are backwards in coming forwards"

However the statistics tell another story. Any examination of the NHS workforce statistics will quickly reveal that something similar is happening in administrative leadership.

The NHS has a pay and seniority banding system which runs up to Band 9 (and, above that, there is a separate system for very senior managers, generally with "Director" in their job title). Assistant Director and Associate Director posts lie within Bands 8 and 9. Management starts mainly at Band 7.

However, the figures show that the highest grade many BME staff in the NHS reach is Band 6. Many find it disproportionately hard to advance beyond that level to begin developing the experience and additional skills to progress in management and leadership positions.

Again, in various discussions, the most senior managers of the NHS tend to frame the phenomenon in terms of a deficiency on the part of individuals. Similar arguments are made across both the public and private sector to explain the under-representation of women in senior posts … whilst women talk, of course, about glass ceilings … the real barriers being encountered.

Managers tend to appoint new managers in their own image. This means that once disproportionality takes hold in a culture it tends to reinforce itself.

Disproportionality is everywhere you look. And explaining the outcomes in terms of schemes to help people try harder will always miss the point.

Not surprisingly, interventions based on the senior leadership way of seeing the problem have failed to make any inroads since Sir Bruce penned his assurances.

Trying again

In October 2011 a larger group of eight very senior BME clinicians wrote a follow-up letter to Sir David Nicholson, the Chief Executive of the NHS.

Signatories included:

• Professor Rajan Madhok (now also Chair of the Clinical Leaders Network Race Equality Action Leadership Initiative)
• Dr Umesh Pradhu (Chair of Warrington, Wigan and Leigh NHS FT and also Vice Chair of the British International Doctors Association)
• Dr Ramesh Mehta (President of the British Association of Physicians of Indian Origin)
• Professor Iqbal Singh (a GMC Council member and Chair of the GMC's Equality and Diversity Committee)
• Dr Kailash Chand OBE (formerly the Chair of Tameside and Glossop PCT)
• Professor Bhupinder Sandhu (Chair of the BMA's Equality and Diversity Committee)
• Professor Aneez Esmail (Professor of General Practice at Manchester University) and
• Dr J S Bamrah, a Consultant Psychiatrist

By now these leaders were not just concerned by any lack of progress on the inequalities which were clearly being evidenced but, in their words,

"...it seems to us that things may have started slipping recently"

They wrote,

"At a time when almost 38% of the doctors in the NHS are from overseas (28% from beyond EEA), we fail to understand their absence or very limited engagement in many of the major initiatives in the NHS. Two examples help to illustrate this. First, is the hopefully self-explanatory letter to Sir Bruce Keogh written last year and second is the absence of any BME doctor on the Council of the recently established Faculty of Leadership and Management (http://www.fmlm.ac.uk/about-us/founding-council). The situation is compounded by the lack of visibility of senior BME figures in the key NHS transition arrangements, and the long standing concerns about their experiences in terms of disciplinary matters, for example.

"This makes it very difficult for us to support and motivate BME doctors for the changes facing the NHS. We feel it is important to find ways to ensure that we do not disengage this large proportion of the medical workforce. Not only are we in danger of compromising progress in the UK, there are also implications for the growing desire to promote overseas collaboration with the NHS since the launch of Health is Global initiative. Certainly, we are very aware of many ongoing, and planned, developments between NHS institutions like NICE and various Royal Colleges and their Indian Counterparts, and the UK based Indian doctors are increasingly being sought to support these."

Six weeks later Sr David replied,

"Firstly I fully understand and share your concerns about racial equality in the NHS. Discrimination has no place whatsoever in the NHS and while we have come along way, there is always more to be done.

"In recent years the Equality and Diversity Council has been leading the way, embedding its vision of a better, personal, air and diverse NHS. I know you were at the recent launch of the Equality Delivery System (EDS) in Leicester and I have to say I was overwhelmed by the passion and enthusiasm that I experienced on the 10th November. I am determined that we now build on this momentum as we mainstream equality in the NHS and engage more effectively by using the EDS as the tool and guided by the principles and values of the NHS Constitution."

This again somewhat misses the point. The Equality Delivery System, in spite of the implication in the poorly chosen name, is a framework for measuring progress on a range of key process essentials and outcomes. It is not, itself, the solution.

What Nicholson fails to say is that, in spite of many urging him to do so, he ducked the opportunity to make the EDS a mandatory requirement for NHS organisations to complete. Flaws in the design also make it very difficult for stakeholders to hold participating organisations to account using the EDS as a tool.

My own research on the EDS, carried out across several English regions, shows that in some parts of the country less than half of NHS organisations have taken part in the EDS (and in many regions those who did have not published their assessments). Where I could get hold of the headline assessments, these varied in one region between trusts claiming they were Achieving in less than 10% of the 18 outcome areas and others claiming they were Achieving or Excelling in over 80%. If the EDS as implemented was supposed to be part of the solution, there are many questions to be answered.

And the disproportionate institutional issues are still here

Despite the assurances over two years from two of the top leaders in the NHS, the problems I've described, and which a raft of very senior clinicians have raised, appear to be no nearer to resolution.

The extent of the problems could perhaps be inferred from more detailed analysis of recent figures about compromise agreements sanctioned to pay off NHS staff. These figures were revealed in data submitted by the Department of Health to the Public Accounts Committee in April 2011.

Recent public attention has brought this data to light as potential evidence of the extent to which NHS staff have been paid off and 'gagged' by clauses when raising issues relating to safety. The main case which prompted this was that of a former NHS trust Chief Executive, Gary Walker, who was said to have received £500,000.

However, what caught my eye is that many of the payments listed in this data are for more modest amounts, less than six figures. There is no diversity breakdown accompanying the Departmental data. However, all the indications about the outcomes of disproportionality operating at the professional end of the NHS would suggest that at least some of these payments result from the contractual avoidance of messy employment tribunals by affected staff.

And when compromise agreements are declined and the grievances go to court they can result in very significant payouts indeed.

In January 2012 Elliot Browne was awarded £1 million for the 'systematic bullying and harassment' he was found to have experienced whilst employed by Central Manchester University Foundation Trust. And, in December 2011 Dr Eva Michalak received £4.5 million for sex and race discrimination and unfair dismissal by Mid Yorkshire Hospitals NHS Trust.

These two examples may be the high profile tip of the iceberg but they are not isolated cases. Coupled with the possibility that other cases are kept out of the courts by compromise agreements and their accompanying gagging clauses it is clear that the issues described here are not just matters of fair practice. They have major financial implications too. Discrimination, whatever the form, is expensive for the NHS. Payouts represent our money being spent in ways that could have been avoided on things other than care.

When senior clinicians are highlighting the issues and the response from the NHS leadership is a misdiagnosis of the problem and faith placed in misconceived solutions then these problems are not going to go away.

There is a challenge, but does the NHS have the right people in place to really understand the underlying issues and treat the actual problem?

Why Equality Will Suffer In A Fragmented NHS

Joined up thinking across all areas. A dream receding into fond memory

There are, as I type, just 24 complete working days before the NHS undergoes the substantive part of the biggest reorganisation it has experienced since 1948.

On March 31st, 152 Primary Care Trusts and the 10 English regional Strategic Health Authorities which supervised them will cease to exist. They will lose their statutory powers to even turn out their own lights. In their place a rats nest of new organisations will take over.

Fragmented

From April 1st, the bulk of commissioning decisions will be undertaken by approximately 212 Clinical Commissioning Groups, supported by a raft of Commissioning Support Units and overseen by a new quango, the NHS Commissioning Board.

The functions hitherto carried out by Strategic Health Authorities (which included regional strategy to join up education and education commissioning; public health strategy; and performance managing PCTs and those provider trusts which were not Foundation Trusts) will be scattered to various new bodies whose names will gradually become familiar.

The processes of strategically planning, budgeting, procuring, and assuring the education of the nation's clinicians will fall to a new organisation, Health Education England, which will operate at regional level through new Local Education and Training Boards (LETBs).

Responsibility for Public Health passes to a new body called Public Health England, which will oversee the strategies formulated by local authorities, who'll receive the 20% of the NHS budget spent on this activity.

The bulk of the work involved in determining local needs for services plus procuring, paying-for and checking on them will become the responsibility of the new Clinical Commissioning Groups. These CCGs will liaise with local Health and Wellbeing Boards (another new concept) to, theoretically, take account of local needs identified in Joint Strategic Needs Assessments before specifying the services they want to buy and signing the cheque.

The responsibility for contracting local GP practices, Dentists and Pharmacists, previously fulfilled by PCTs with SHA oversight, will pass to the NHS Commissioning Board, which will spring 27 'Local Area Teams' (LATs) in order to cope with the size of this work and ensure it is carried out reasonably locally.

And this doesn't include explaining the role of Monitor or the Care Quality Commission (CQC), or clinical networks and senates, or health watch.

None of these organisations yet have any experience of working with one-another. Many CCGs still haven't been authorised yet. They will start groping their way around and building relationships with their various points of contact in April.

Elderly experienced NHS staff, who have seen many reorganisations in their time, say that no previous change was anything like this. Those who can are grabbing the money and retiring.

Goodbye integration

The old system which is about to be closed down was far from perfect. No big organisation is.

However, from the point of view of trying to promote equalities in the NHS, the old system had very distinct advantages, which the people I've worked with these past few years were able to exploit.

The advantage of Strategic Health Authorities (SHAs) was that, within a region, they had a very complete picture of the whole NHS. You could strategise all of the functions illustrated in the diagram above.

SHAs were effectively offshoots of the Department of Health. They received money from the Secretary of State to oversee the entire health service in their region. There are ten English regions, administratively, so there were ten SHAs.

SHAs brought everything together in one place. They held the budget for planning and securing the training and continuing education of doctors in their region. They performance managed the way that services were commissioned by Primary Care Trusts (PCTs). And they performance managed those NHS provider trusts which hadn't achieved the qualifying criteria to operate independently as Foundation Trusts. (The Foundation Trusts could also be influenced at second hand by performance managing the PCTs who commissioned them).

Some people hated the extent of this much power in one place. However, if you want to plan something strategically then there are immense advantages in having that kind of structure. It certainly benefits equalities work.

Equality is a strategic issue

Equality.

It sounds such a simple idea.

The NHS was founded to provide a service to everyone at the point they needed it. That very idea embodies the committment to provide the same experience and quality of outcomes for all. Equality isn't something you bolt on to the NHS. It is fundamental to its purpose.

Equality also applies to the NHS's own workforce. And with good reason. In order to create such a universal service with the skills and capacity required, the NHS has always needed to lead in taking on staff from wherever the skills existed.

The NHS of the 1940's, 50's, and 60's invited thousands of Doctors and Nurses to come to Britain from the former Commonwealth Countries. And that legacy continues today. It changed the face of the nation. A very large proportion of the NHS's clinical staff still come from a Black or Minority Ethnic Background. Trying to ensure that all staff have the same quality of experience and opportunities in such a large institution reflects the challenges in wider society.

The advantage of tackling equality from the vantage point of a Strategic Health Authority was that you could set out to try and address issues which require joined up approaches. You could work across the disciplines of public health, commissioning, providers and workforce education and bring people together easily, even though some of the problems might still take years to address.

Joined up no more

The problem in the new landscape will be that everyone will henceforth be limited to working within their own silo. To work outside of those limits will require complex partnership arrangements to be worked out. The de-centralisation will make this hard to achieve on any large scale. It will be particularly difficult for small stakeholder groups to engage with.

Health Education England and Public Health England have so far made no announcements about equality. And there is nobody with the power to insist that they do … except to the extent of checking they've ticked the boxes to claim that they comply with the Public Sector Equality Duty.

This means that two important parts of the health system are unlikely to approach their work with any professional grasp of the equality implications in what they do.

The recruitment and education of doctors and nurses will most likely be planned without much thought to the diversity of applicants, why it is important for the workforce to reflect the population, and how an understanding of diversity affects the quality of outcomes for patients. With the right knowledge, education commissioners can have a big effect.

Public Health strategy will most likely be made without much understanding for the differing underlying determinants of health inequalities. People will shake their heads at how intractable some health inequalities appear to be. If you doubt me then study a few Joint Strategic Needs Assessments turned out by local authorities who should know better.

The NHS Commissioning Board is the only organisation that has so far given any indication of planning an equality strategy … though the signs so far indicate a dogs breakfast of delayed decision making and muddled organisation. Even if the organisation belatedly sorts out some structure for itself, however, its influence is limited to the left branch of the diagram above.

The NHS CB can influence how commissioning is carried out. It can influence how GP, dental and pharmacy services are contracted and performance managed. Anything else will require negotiation.

Low expectation

It is for these reasons that I have low expectations of anything genuinely transformative happening in the NHS in terms of equality … at least for years to come.

The managers will very probably talk the talk. They will talk high-mindedly of 'values' and 'change' and 'transformation'.

Stakeholders will roll their eyes.

The truth is that the managers don't have the keys to all the cupboards.

The equality dimension of Public health … tackling the immense health inequalities which we know exist … will be outside of their direct influence. Anything you want done will depend on the local authorities running local public health strategy. And I'm sure they will have their own ideas of how to spend their money. There will always be islands of excellence, but no national transformation.

Education … recruiting and training a diverse and culturally competent clinical workforce … will be outside of their direct influence. If the past experience with the old Workforce Development Confederations is anything to go by, there may be islands of good practice. LETBs are like WDCs reinvented. However, the good practice will simply underline the missed opportunity on a wider stage.

And I don't hold out much expectation for what the NHS Commissioning Board will achieve either. The manner in which the creation and recruitment of an equality and health inequalities team has been put off repeatedly and then botched at the last minute doesn't smell of roses.

We'll see.

Meeting Lynn Conway

I can clearly remember the evening in late 1999 when the very first email from Professor Lynn Conway plopped into my inbox.

In those days much of my spare time was consumed as a vice president of the Press for Change campaign, doing advocacy work, editing the campaign's fast growing web site, and responding to requests for help and advice from the people who found us that way.

Lynn Conway's email was  out of the ordinary though.

First contact

She introduced herself as a trans woman who had been living in what's called 'stealth' for over 30 years.

She had a whole career without anyone being aware of her trans past. She had achieved a great deal that way.

Now, with retirement ahead, she was tentatively coming out and planned an information site to explain both her past and provide supportive information to counter what she saw as an industrial scale of lies about women like herself.

In her online searches Lynn had found us. She liked our factual and educational approach and wanted our advice and support to publicise what she was doing.

It was the beginning of a long association from afar.

It was an association which, after all these years, I was finally able to turn into a face to face meeting two weeks ago whilst passing through Chicago.

Coming Out

In our first exchanges Lynn explained how the decision to "come out" and explain about both her hidden career history and her transsexual past was prompted by the realisation that other engineers and journalists were beginning to display an interest in projects she had been associated with at the computer giant IBM in the mid to late 1960's.

Rather than face the possibility of people discovering her work and then tracking her down in some grand exposé, in a way she wouldn't be able to control, Lynn had made the calculation that it was better to seize the initiative, and explain her work to the researchers. It was a chance, finally, to step up to claim her part in a supercomputer project that was cancelled, and for her to explain an important invention which had then been buried by events until being 'reinvented' many years later.

Genius designer

Prior to her gender transition, Lynn had been employed straight out of college as a computer hardware design engineer, working in a special division of IBM, designing what was hoped to be an advanced supercomputer architecture. She was a major talent, with a tenacious approach to problem solving and an amazing ability to think 'outside of the box'.

In the course of her work Lynn tackled one of the fundamental problems of high speed computer design at that time.

Computers normally execute instructions one at a time in sequence. The top speed of any computer that works that way is determined by the physical limits of how fast instructions can be retrieved from the computer's memory, interpreted, and then executed by the arithmetic processor that lies at the heart of the machine.

Other engineers had invented techniques that chipped away at the edges of this problem. By fetching and storing instructions ahead of when they are required and storing them in a small special (expensive) 'cache' memory, the fetch time could be reduced. By breaking down the steps to execute an instruction, fetching the data to be processed whilst a previous instruction was being calculated, a little more time could be saved.

However, Lynn went for the jugular. She realised that the real speed advance would come if several instructions could be processed at the same time, in parallel rather than in sequence. It was a monumentally tricky problem. The approach fails if one instruction depends on the result of the calculation in a previous one. Ultimately, the calculation must turn out as though executed in the order the programmer intended. Computer programs also regularly branch off to new sets of instructions too. When that happens you can't so easily predict the necessary instructions to execute in advance.

Only a certain kind of mind can approach a problem like this. Lynn had that kind of brain. And her design for 'Dynamic Instruction Scheduling' was just the breakthrough to go at the heart of an ambitious supercomputer project.

Disaster

Big companies are full of politics and rivalries though. And Lynn was contemplating a personal move that would rock the senior management of the deeply conservative IBM.

Moves were afoot by one team of rival managers to cancel the supercomputer project that Lynn was working on. And the crunch showdown battles happened to coincide with Lynn having announced her intention to change gender. She was suspended whilst the company decided what to do about her transgender revelation. This meant she wasn't around to help with the fight for the advanced computer system project.

And because Lynn wasn't around, the company also missed the incredible invention she had made … buried inside the design of the overall computer. The patents department had also not understood the import of her design either. Basically, this was a company sitting on something that would have transformed its fortunes competitively. IBM computers with Lynn Conway's super-fast central processing engine would have left every other machine standing. Yet even her colleagues didn't properly appreciate the enormity.

The super computer project was scrapped and this made the decision to 'let go' the sexually peculiar engineer simple to carry through.

And that's where the history of Dynamic Instruction Scheduling could have remained.

Poor Lynn didn't fully appreciate all these details at the time. She certainly couldn't understand how IBM could have overlooked the pearl in the wreckage, now archived away in the company's paper vaults. It is only today, as she collaborates with former colleagues on a memoir of this remarkable period, that she has been able to piece the story together.

You can read the results of that forensic investigation in a newly published paper here.

(Don't let the title or the technical parts put you off, it is a fascinating study of corporate intrigue, transphobia and incompetence).

A new career

Lynn Conway's career could have ended there. However, when you meet her you realise just why it didn't. This is one incredibly determined woman.

Lynn went away from IBM. She obtained the surgeries and treatments she needed to complete her gender transition. And then she began again.

Having realised in those days (at the end of the 1960s) that nobody would employ a trans woman in any seriously responsible work, Lynn had to make her way in a completely new life. She would have to build a career without any reference to her past, as that would have revealed her transsexual background. She couldn't rely on her college qualifications. She couldn't refer to her work at IBM. She could only start at the bottom.

This reboot of her career is explained in detail again on her web site. Bear in mind that when she wrote this Lynn expected that the only person who could really be relied upon to tell her story objectively was herself. Many trans people (including myself) will identify there.

To cut a long story short, a talent like Lynn Conway's is hard to keep in a box. From a modest job as a programmer she joined the heady environment of the Xerox Palo Alto Research Centre (PARC) at the time when a technology revolution was getting underway. This is the place where talented young people came up with the ideas for graphical computers … with windows, icons, mice and pull-down windows.

Another major invention was on the horizon too … the Very Large Scale Integrated circuit. Lynn found herself partnering with a physicist called Carver Mead. He knew how to build basic electronic components at microscopic scale on wafers of very pure silicon crystals. But the problem that stood in the way of exploiting the potential of that technology (on which our lives depend these days) was the need for a whole new paradigm of circuit design.

Without getting too technical, electronic engineers in those days were used to designing things with either discrete components (transistors, resistors, capacitors, etc…) or simple arrays of basic logic chips, where you connect the outputs from one device that performs a function to the inputs of another.

Designing for very large scale integration required a different way of thinking. It was completely beyond classically trained engineers. You could not design chips without understanding the microscopic details of how fundamental components are made, layer by layer, in the silicon. If engineers needed to learn this then very few would be able to exploit the potential for massively complex designs in a tiny space.

Once again, this was the sort of problem which Lynn Conway's mind was perfectly adapted to solving. Working in partnership with Carver Mead she came up with an approach for designing in building blocks that engineers could easily grapple with. She designed a training programme so this approach could be taught in universities. And the two came up with a technique that allowed engineers on those courses to try out their designs for real. It was the world's first e-commerce system, where engineers could submit their designs and have them made in sample quantities to order.

The outcome of these innovations changed the world for all of us.

In the first few university courses young engineers prototyped chip designs which enabled whole new businesses to be created: the giant corporations Silicon Graphics and Sun Microsystems were among those which stared in Lynn's classes.

Recognition

This time Lynn wasn't about to be booted out of her job, so a degree of recognition has flowed in the years since.

However, being a woman has also meant that Lynn experienced a phenomenon that other female engineers may have encountered. There has been a tendency, over the years, for the work of one partner to be elevated at the expense of giving proper credit to her own. Carver Mead has gone on to receive many more awards, whilst Lynn soon started to be forgotten or dismissed as his 'assistant'.

This, again, feeds into Lynn's determination to ensure the history is told fairly and completely.

The first step to telling her story was Lynn's own VLSI Archive.

Four years ago, Lynn also gave an interview to me in which she talked about her work.

Then David Hodges, the Daniel M. Tellep Distinguished Professor of Engineering Emeritus at U. C. Berkeley, invited Lynn to write a memoir about the VLSI revolution for a special-issue of IEEE Solid-State Circuits Magazine. In this she wrote her own reminiscences of how the revolution came about and the paradigm shift involved.

A contemporary from those days, Chuck House, writes, "A Paradigm Shift was happening all around us". One of the pioneers of modern TV and camera sensors, Carlo Séquin, writes that "it was the charisma and enthusiasm of Lynn Conway that drew me into the environment" ("Witnessing the birth of VLSI design").

Remember, this is the story of someone who changed ALL of our lives. Practically everything we use nowadays depends on tiny, low cost, high volume VLSI chips. Many products simply wouldn't be economically viable any other way … or portable. Mobile phones, desktop and laptop computers, cameras, flat screen televisions, and most of the electronic equipment used in modern medicine. The chip is so ubiquitous that it is hard to remember the world that existed before … when computers filled large rooms and required enough electricity to run a small town just to power them.

The more Lynn Conway and her co-investigators reveal the history of how that all got started, the more people are bound to ask why someone like her is not a household name. Writing in the same special edition of  the IEEE Solid-State Circuits magazine Ken Sheppard describes the phenomenon as "Covering".

Meeting Lynn Conway

I am lucky that my own computer science training equipped me to appreciate the enormity of her contribution to society almost straight away.

My Professors at University taught us students about high performance computer design in the early 1970's, and they built amazing prototypes such as Manchester's MU5 research computer. But MU5's central processing unit, advanced as it was, was not a scratch on the designs Lynn had laid down at IBM several years beforehand.

As a software research student, I clearly remember my friends who went on to do engineering research having copies of Lynn Conway and Carver Mead's book on their desks. They dreamed of having access to the prototype manufacturing capability she was providing to US-based engineers.

As online collaborators, my contacts with Lynn Conway after her approach in 1999 concerned a transatlantic movement to change the status of trans people - a challenge she approached with the same forensic style of thinking. We faced different challenges in our respective countries but, at times, the threats were global. We shared ideas. We planned strategies to counter the lies about our lives.

Yet never in that time did the opportunity arise to meet my distant friend. I visited the United States periodically on business, but it's a big place. Opportunities never presented themselves.

This month, however, I needed to travel to San Francisco for a conference. And, because I didn't want to fly straight back from such a distant destination, I came up with the idea of travelling across the US, coast to coast, by train. The trains connect in Chicago … tantalisingly close to where Lynn is retired in Michigan. My itinerary required a two day stopover. This was a once-in-a-lifetime opportunity to meet a remarkable woman.

Long drive

The first surprise was how readily Lynn agreed to meet me. There is no such thing as a short drive in the US. Simply getting from her home to my hotel in Chicago's business district would require her to drive non-stop for three hours. And to drive the same distance home. She also had a tight schedule which, at first, sounded as though it would confound us. In the end, however, everything just clicked into place.

Lynn turned up bang on time in my hotel's lobby on the Saturday morning, as arranged. She looked exactly as she does in all her publicity photos. And remarkably well preserved, given the fact that she had just recently celebrated her 75th birthday.

She is a quietly, but very intelligently spoken woman with a mind that seems just as incisive as I imagine it was in the 1960's.

The hours flew. She brought me copies of her publications, and patiently explained them to me. I asked questions. She corrected where necessary. Even when describing her brutally insensitive treatment by 1960's IBM, and the more insidious writing out of the history of VLSI, there was no trace of anger or bitterness.

I could see how Lynn was at first genuinely confused by the way in which her invention at IBM got overlooked. In fact, at the time, she didn't even realise that it had been missed. She says that, if she had known, she would have felt crushed.

I could see how it had begun to occur to her that her steady erasure from VLSI history for two decades had parallels in the historical experiences of other very clever women. I could see how this very analytical mind was doggedly determined to explore any gaps she found in the account. Gaps gnaw at her. She needs to explore and explain the unknown. It is her instinct as an intellectual. She won't let go. It is what drove her to the two great contributions of her life.

We talked long and deeply. I bought her breakfast whilst I sipped tea in the hotel's café. After a while we had to move as the staff needed the table. We carried on in the lobby.

We talked for over six hours in the end. And neither of us really wanted it to stop. Me, fascinated with the first hand account of a real life heroine of the modern age. She, I guess, just pleased to have someone bright enough to understand her story and ask the right questions.

Goodbye

At the end it was dusk and I worried about a 75 year old woman driving three hours home in the dark through icy Illinois and Michigan roads. I shouldn't really have concerned myself. Lynn evidently looks after herself and all her faculties are very much there. I can only hope that I can manage to be as fit when I reach her age. I'm also sure she has the capability to achieve her last big mission now, which is to tell the whole story, and to draw attention to the phenomenon that obscures the contributions of great women.

We walked together two blocks to the garage where she had parked her car. We hugged and kissed. The standard kind. And then, as though on an impulse, Lynn gave me another longer, harder, hug. It marked a long distance friendship of more than 13 years, formed from a common interest. The recognition between people with one big experience of life in common, if not the rest.

I turned and walked away under the elevated railway to catch some sightseeing, simply amazed by the meeting I had just had. I didn't want to linger and see her drive away. I wanted to keep that special moment.

I am so glad I met her. People ask what sights I saw when I visited Chicago. In truth I visited none. A lengthy walk around the streets was all I had time for.

But I had spent the day talking to a woman who changed all our lives.

San Francisco Consensus Augurs Well for ICD Revision

An important meeting of minds took place in San Francisco earlier this month, with encouraging signs for revising trans related classifications in the forthcoming 11th Edition of the International Classification of Diseases (ICD).

I was there to participate and influence the discussions as an international adviser to the World Professional Association for Transgender Health (WPATH).

International gathering

With me were the WPATH Board of Directors and members of WPATH's ICD working group from countries around the world. We were also joined by representatives from the World Health Organisation's project team responsible for this section of the revision effort, including one of their senior Human Rights lawyers.

People were taking part from countries as far apart as Canada, China, Venezuela, Bahrain, Argentina, Cuba, Australia, South Africa and Turkey … some via video links from their home countries, but most in the room.

The UK and Europe contingent included contributors from Belgium, Sweden, the Netherlands, Norway, and Spain. Dr Walter Bouman (lead clinician at the Nottingham Gender Clinic) and Professor Kevan Wylie (lead clinician at the Porterbrook Clinic in Sheffield) were there as UK clinicians.

Overall there were just over 30 of us taking part in the day and a half of sessions, which took place over Sunday 3rd to Monday 4th February.

About the ICD

The International Classification of Diseases (ICD) is the standard set of definitions of diseases and health interventions used throughout most of the world except the United States. It is published by the World Health Organisation (a specialised agency of the United Nations) and has to be ratified by the health ministers of all 193 WHO signatories (the 'World Health Assembly') before each new revision is published.

In order to ensure the World Health Assembly ratification goes smoothly an immensely rigorous process is followed, gathering consensus worldwide, before a draft is submitted for ratification. For this reason, the process currently underway is expected to run until late 2015. It is not considered likely that the new ICD-11 will be published earlier than 2016.

Unlike the US Diagnostic and Statistical Manual (DSM), which many trans readers will be familiar with, the ICD covers the full range of everything that clinicians concern themselves with, including acute and chronic medical conditions, health prevention and wellbeing interventions, mental health conditions, and supportive therapies.

For trans people this broader scope opens opportunities that are not present in the DSM, which is concerned only with defining Mental Health conditions.

In the DSM, a condition is either a mental health condition (hence included) or not (in which case it is excluded, with possible implications for funding care).

With the ICD there is more breadth of possibility, since trans classifications have the potential to be moved into other chapters of the publication (out of 'Mental and Behavioural Disorders') whilst still being within the scope of health classification as a whole.

The present edition (ICD-10) has been in use since 1992. Transgender-related classifications have been included for almost 50 years.

A classification for 'Transvestism' was first included in a chapter on 'Sexual Deviations' in the ICD-8, published in 1965.

Transsexualism was added to the same chapter in the ICD-9, published in 1975.

The ICD-10 (prepared in 1990) then added a whole raft of additional categories, including 'Dual-role transvestism' and 'Gender identity disorder of childhood' all under the new parent category 'Gender Identity Disorders'.

These long intervals between updates, during times of massive social change, underline why the present revision process is significantly overdue, and especially important to get right. The next chance may not be for another generation.

The Change Process

It is vitally important to stress that WPATH doesn't get to determine what will appear in the new edition; nor is the WHO open to lobbying from any single quarter. However, the significance of WPATH's involvement is that it represents a global community of over 800 clinicians with direct specialism in helping and supporting trans people.

The experience of that community is unequalled. The meeting which the organisation convened this month is part of a progressive process of achieving an effective international consensus among its own members, and enabling those members to participate in the WHO's own open consultation process looking for an even wider consensus.

WPATH will be writing more themselves in the coming months about the consultation process from their members' point of view. I will also try and publish some details soon for how non-WPATH members, including stakeholders, can get involved.

Clinical Utility

The watchword of the whole ICD-11 revision process is clinical utility. This means that classifications are judged according to their usefulness to clinicians in being able to support and treat people seeking care. A classification which fails this test doesn't make it into the next ICD.

The WHO teams are also aware of the social and political implications of what they publish. In conversation with them it is clear they understand the potential for classifications to have stigmatising effects (or even support criminalisation in some countries) with careless positioning or wording. These possibilities were particularly discussed when we came to the question of whether it was helpful or damaging to include a classification for children exhibiting gender non-conforming behaviours. Indeed, this was the only topic which divided us. It is something which clinicians with narrow parochial interests of practice in their own countries need to get their heads around.

The proposed classifications are not simply imposed without evidence. The process which will take place over the next two years includes organised 'field testing' … a form of consultation … where the WHO pose questions to thousands of participating practitioners about proposed classifications and whether they will be effective in clinical practice. This is why it is so important for gender specialists to be involved, and why the formulation of the questions put to the field trial groups is of vital interest too.

Setting the scene

The proceedings were opened by Dr Lin Fraser, the President of WPATH, who was also the local host for the conference. In turn she introduced members of the board, including the co-chairs of WPATH's ICD working group, Dr Gail Knudson from British Columbia and Dr Griet De Cuypere from Belgium.

To set the scene on our day and a half of discussions, four of us from different interest areas were asked to speak about how the ICD influenced clinical practice and outcomes in our own countries. Besides myself there were Mauro Cabral, a co-director of Global Action for Trans* Equality (GATE) from Argentina; Eszter Kismodie, an international Human Rights lawyer specialising in sexuality, sexual and reproductive health - advising WHO; and Dr Jamison Green, WPATH's president-elect. Jamison becomes the next president of WPATH in February 2014.

Kicking off our session I first explained the history of work towards social and legal change for trans people from around the same time as the ICD-10 had been published in 1992. I mentioned the long tradition of working collaboratively (and critically) with clinicians over that interval, starting with the Gendys conferences which began in 1990. I pointed out the number of revisions which WPATH's own guidelines had undergone in those 20+ years. And I listed the key legal and social changes for trans people in that time. I also reflected how even the ICD-10 definition of transsexualism was little different to the ICD-9 one … hence all these massive social and legal changes had occurred whilst we were still working on international classification that had remained essentially unaltered since 1975.

These reasons, I explained, were why ICD revision could not be incremental … change had to be radical simply to catch up with almost 40 years of major social change, and to create something which would be fit for purpose for anything up to another 25 years. I invited everyone present to approach their task with that in mind.

I expressed my view that unless the ICD genuinely fulfilled the WHO's aim of 'utility' in this area then countries would continue to do what had long since begun to happen … simply paying lip service to the classification system whilst working around it. It was important, I said, for the language and positioning of categories to reflect where we already are in practice (and where we are clearly going). Classification should be an enabler for care. It should not add to the burden felt by either the patient or practitioners who want to see a continuation of evolving best practice.

Mauro Cabral followed with an inspiring contribution, reminding everyone that counties such as Argentina were in some ways far ahead of the curve in conceptualising how to support trans people intelligently. He also tied this to previous work by international Human Rights lawyers developing the so-called Yogyakarta Principles.

Mauro's presentation dovetailed well into Eszter Kismodie's presentation, which provided a broader Human Rights context and referred to a casebook of national court decisions from around the world, gathered by the International Commission of Jurists.

Jamison Green then rounded off the session, pointing out that clinicians in the United States are among the few in the world without access to the ICD-10 (still referring to the ICD-9), but explaining how, even so, WPATH (as an international organisation with widening membership) had a major stake in the revision process. He also explained how trans people in the US are severely marginalised, and consequently are penalised, by the US’s high political status when it comes to participation in international discussions, so the ability to participate in these discussions through WPATH, he said, was both unprecedented and crucial to trans people in the US.

Following our presentations, Geoffrey Reed, the project officer responsible for the revision of the contents in the present ICD-10's 'Mental and Behavioural Disorders' section, explained in considerable detail where the WHO and ICD sit within the scheme of things in the United Nations, and how the consensual revision process is being approached, including the involvement of almost 10,000 clinicians interested in contributing views.

Revision Possibilities

The starting point for revising the ICD-10 is to consider the classifications which it currently contains. As explained above, the original Transvestism (1965) and Transsexualism (1975) classifications had been added to considerably when the ICD-10 was drafted in 1990. The trans and related classifications included:

F 64.0 - Transsexualism
F 66.1 - Egodystonic Sexual Orientation
F 66.2 - Sexual Relationship Disorder
F 64.2 - Gender Identity of Childhood
F 66.0 - Sexual Maturation Disorder
F 64.8 – Other Gender Identity Disorders
F 64.9 – Gender Identity Disorder, unspecified
F 66.8 – Other Psychosexual Development Disorders
F 66.9 – Psychosexual Development Disorder, Unspecified
F 65.1 – Fetishistic Transvestism
F 64.1 – Dual – Role Transvestism

Well over a year ago WPATH's own ICD Working Group, led by  Drs Griet De Cuypere (Belgium) and Gail Knudson (Canada), had come up with a set of evidence-based recommendations for the WHO to delete the vast majority of these classifications … simply because research in national health databases showed many were simply not used in any case.

Those of us who volunteer as WPATH's external advisers concurred with that rationale via online discussion. What that left to discuss was:

F 64.0 - Transsexualism
F 64.2 - Gender Identity of Childhood
F 65.1 – Fetishistic Transvestism

As these three categories required more interactive face-to-face discussion, the main purpose of the meeting in San Francisco was to attempt to reach a consensus that the WHO representatives could see and understand.

The essential points for discussion were:

1. Whether the F64.0 'Transsexualism' category should be renamed and moved to another (non-mental health) section in the ICD-11 and, if so, where (if anywhere at all).

The consensus was that there was utility in keeping, renaming and moving the diagnostic category to a non mental health section … although there was dissenting opinion that, if the prime reason for retention was to facilitate access to health funding, then it would be better to fix such a system rather than creating health categories to collude with such distortions. Taking account of the needs expressed by non-western countries, however, the view in the room was that classification is needed but should not be in mental health. The ICD working group will have further work to refine the naming and positioning proposals.

2. Whether the F64.2 'Gender Identity of Childhood' category should be retained and, if so, whether it should be renamed and moved to a another (non-mental health) section in the ICD-11

This proved to be a far more divided discussion, bearing in mind that the patient group was (by definition) pre-pubertal children for whom no actual clinical interventions are carried out. All that clinicians do is observe and support … and this is actually support for families to care for their child more than any diagnosis on the child. The later clinical interventions required by adolescents are classified under the previous heading (expanded to cover adolescents and adults together) and it was noted that, among the children, the majority of patients seen resolve as gay or lesbian by the time puberty commences. It was argued that, if it is already considered inappropriate to classify and treat homosexuality as a disorder, then a category such as this would be classifying pre-homosexual cases by another name, as well as providing a license for the practice of 'reparative' therapies. One attendee presented letters from clinicians around the world arguing against classification whereas another, from a European gender team, argued strongly for the benefits of having a classification in their own country. Eventually a vote was taken and opinions turned out to be split exactly down the middle: 50/50. Much more discussion and consideration of evidence will therefore be needed in this area.

3. Whether to take a position on deleting F65.1 'Fetishistic Transvestism' or to retain it in a more specific form.

The overwhelming majority in this case argued for recommending deletion, on the grounds that any distress felt by people about their cross dressing behaviour could be addressed through more general categories of the type where people seek help without having a specific condition (so-called 'Z-codes'). There was no appetite for pathologising a harmless behaviour that is largely cultural in nature. The WHO's threshold for including anything of this nature is where a behaviour may be of specific harm to others. That threshold was not achieved here. One attendee argued that they would like to keep a specific category for helping patients in the extreme instances where the degree of cross dressing becomes out of control and the individual becomes afraid of compromising their job or family life, or getting into trouble with authorities. The majority argued that patients with this kind of need could be helped under broader classifications dealing with obsessional behaviours that reach clinically significant levels.

What happens now

As I said before, WPATH's views are not definitive. They are just one constituency listened to by the World Health Organisation … albeit an expert and influential group in this field.

The 'votes' taken around the table on these three issues are not the final say either. In each case the consensus (or division of opinion) informs the work which the organisation needs to do to consult with its wider membership before submitting definitive recommendations to the WHO. The degree of international consensus is indicative of the direction of travel though.

In summary

Overall, it was an immensely productive meeting, with a considerable meeting of minds on the topics for discussion, and respectful hearing of the opposite sides of the debate in the one case where there remains a clear division.

I made a case for WPATH to ensure that, as well as now updating their 800+ membership they should also reach out transparently to stakeholders and their organisations too, to ensure that all views are taken into account and balanced as well as possible. It is likely, for instance, that trans stakeholders may have divided views on a world level too. That is the challenge of the ICD … to come up with consistent medical classification that works in all cultures without running the risk of disadvantaging patients in some cultures for the advantage of those in others. It underlines why trans people need to continue working internationally too.