The General Medical Council, Britain's professional standards regulator for doctors, is interested to examine and possibly pursue up to 39 case histories involving the alleged abuse of transgender patients.
That was the headline announcement during a compelling presentation by businesswoman and trans activist Helen Belcher, appearing at a health care conference at the London Lighthouse earlier this week.
The cases, arising from a powerful twitter campaign thought up by Cambridge Liberal Democrat Councillor Sarah Brown in January this year, were part of a dossier of more than 130 detailed responses collected online following over 1000 tweeted patient complaints.
Documented case histories
98 of the documented allegations were presented to the GMC in mid February. Fifteen may have to be set aside for technical reasons.
The remainder … documenting serious alleged disciplinary issues, are now being examined more closely prior to actions being initiated.
Ten of the allegations involve alleged sex abuse or inappropriate intimate examinations.
Nineteen cases allege refusal of medical treatment.
One involves an alleged coercive threat of withdrawing treatment.
Four involve alleged inappropriate or damaging treatment.
And these, activists say, are probably only the tip of a far greater iceberg. These responses come only through those patients aware of the online campaign started on Twitter under the hashtag #transdocfail.
Previous research suggests there may be many more.
Wider care failings
The allegations come at a time when the whole medical profession and NHS system are coming to terms with the conclusions and recommendations of the Public Enquiry chaired by Robert Francis QC, dealing with the preventable deaths that occurred at Mid Staffordshire Hospital between January 2005 and March 2009.
Revelations of what took place in Mid Staffordshire have rocked the entire British health system.
The report documents that, between 2005 and 2009, warning signs of significantly higher than normal mortality rates at the Stafford Hospital were repeatedly ignored by managers and regulators.
Patients were so thirsty they drank water from flower vases, relied on their families for food and were left in sheets soiled with urine and faeces.
Many suffered falls, some leading to serious injury, unobserved by staff.
The report states, "Staff treated patients and those close to them with what appeared to be callous indifference".
"It is clear that not just the Trust’s Board but the system as a whole failed in its most essential duty –to protect patients from unacceptable risks of harm and from unacceptable, and in some cases inhumane treatment that should never be tolerated in any hospital".
And, among the conclusions the report states:
"The overarching conclusion is that ‘a fundamental culture change is needed to put patients first, which can largely be implemented within the system that has now been created by the new reforms".
Activists argue that this general observation, applied to the culture of the whole health system (which is now under scrutiny) is precisely what lies at the root of the cases documented to the GMC by trans people.
And a solution which does not include the same kind of scrutiny of these very serious alleged abuses, and the culture which has facilitated and has hidden them for possibly decades, would be suspect.
"If these terrible abuses aren't dealt with now", said one audience member in London, "we'll know that the NHS and doctors' organisations are still just painting over the cracks and indulging in a cover up".
Trans* Health Matters
Helen Belcher's presentation formed part of the Trans* Health Matters conference on 12th March 2013, funded and supported by the National LGBT Partnership and hosted by the Terrence Higgins Trust at their London Lighthouse centre in West London.
The conference was intended for Directors of Public Health, NHS and other commissioners, health and social care managers and practitioners, sexual health providers, education heads and (of course) Trans* patients and community members.
The event, Chaired by Monty Moncrieff, Chief Executive of London Friend, was packed.
I was invited to present a keynote speech setting the background and some challenges for the day … and, from beginning to end, the audience in the conference hall was standing room only.
Among the presenters were Lee Gale from the Trans Resource and Empowerment Centre and Trans Bare All; Jay McNeil of Traverse Research; Michelle Ross from cliniQ (a new health clinic for trans* people) and representatives from Trans Media Watch including Helen Belcher.
Jay McNeil presented details of a pilot research project which TREC had undertaken for NHS North West, attempting to install posters signposting supportive information in a sample of North West GP surgeries and gathering very basic anonymous summary data about trans patient numbers.
The signposting exercise was similar to the preliminary phase of an earlier NHS North West project with the Lesbian and Gay Foundation, which led to the development of a tool called 'Pride in Practice', endorsed by the Chair of the Royal College of GPs.
And the goal of the follow-up research with a sample of 200 GP Practices around the region was to provide very basic planning information for health leaders to design policies and strategic interventions.
As Jay explained (and as a forthcoming report will confirm) both halves of the research were derailed by serious obstruction on the part of practices, which included blatant lying by practice administration staff. This was in spite of the backing of the Strategic Health Authority and Local Management Committees.
The exercise was described by the Equality and Diversity team at NHS North West as a "Heroic Failure", insofar as it didn't achieve the original objectives because of the obstruction, but provided copious evidence of a culture problem among some GPs. The report will be published in the next couple of weeks and it will be reported here.
Obstruction causes direct harm
Jay McNeil's second presentation of the day concerned the largest research project to have ever examined the Mental Health of trans* people in Britain and Ireland.
The Trans Mental Health Study 2012 (report here) was run in Partnership with Transgender Equality Ireland between June and July 2012. It collected 889 responses from trans* people of all descriptions, obtained by snowball methods.
The research questionnaire incorporated a formal Mental Health inventory and produced high quality, academically robust and statistically significant findings of a kind not sourced on such a scale in Britain before.
Jay explained to the audience that the Mental Health inventory showed that the sample appeared to contain two distinct groups of people … almost exactly half with absolutely normal mental health and a second half with very distinct mental health problems which included severe depression and suicidal ideation.
Analysis of the data revealed that the healthy group corresponded mostly with those respondents who had completed their gender transition as they wished.
The group with mental health problems were those waiting for or encountering obstruction in obtaining gender identity treatment and support in transition.
The distinction could not have been more plain. Put simply, the research suggests that obstructing care for people with gender issues does them active mental harm.
Trans Media Watch is a group mainly concerned with the media representation of trans people. They aim to work with journalists and producers to help improve the quality and accuracy of coverage of trans* people.
Given this brief, the group explained that they wouldn't normally find themselves investigating health abuses … although the negative portrayal of trans people, and false press reports of what gender treatment costs, could be traced as a factor giving rise to discriminatory attitudes among clinical personnel.
Helen Belcher charted the background to the #transdocfail phenomenon. It had begun in the confluence of two otherwise unrelated press-related incidents in early January.
In the first instance there was a report by the Guardian's David Batty concerning the GMC's investigation of a popular private GP who provides care to trans people. This follow-up story in the same paper by Jane Fae explains the background and controversy which was generated.
At around the same time a quite separate controversy began, centred on comments by columnists Suzanne Moore and Julie Burchill. The intersection of these two controversies is explained in this Just Plain Sense blog at the time.
Frustrated that the big media story became the Moore / Burchill case, and that this had completely eclipsed concerns about the Guardian's highly selective reporting of GMC cases, Councillor Sarah Brown had begun a twitter hashtag for people to tweet bad experiences with Doctors. She called it #transdocfail.
The #transdocfail idea was an unexpected success … generating over 1,000 separate and distinct responses in barely 24 hours.
Breaking the silence
Sarah and I appeared on her local BBC radio station to discuss the phenomenon. You can hear the recorded discussion here.
Anecdotal tales related to many trans activists over the years have long indicated that some trans people had negative experiences both with GPs and gender clinic staff. In the past these reports couldn't be followed up, as the informants were afraid of the consequences of speaking out.
The anger generated by the combined sense of injustice over the two events seemed to cut right through that reserve though.
Suddenly it seemed that trans people were in a mood to tell their stories.
Some indication of those stories had been captured previously by questionnaire based research and the analysis of activist case files.
In 2006-7 the campaign group Press for Change was commissioned by the Equalities Review to conduct academically robust analysis of the problems faced in general by trans people. The report, "Engendered Penalties", published in February 2007, is available here.
The researchers reported:
The health care system of the UK is key to many trans people managing to fulfil their lives. Clearly for some the expertise, help and care they receive is very positive. Around 21% of trans people start the process by seeking help from a knowledgeable GP to begin the process of obtaining GRS, or other relevant services. However this research also found, that another 21% of respondents’ GPs either did not want to help, or in 6% of cases actually refused to help. This is an improvement of 50% compared with the experience of services over 15 years ago, but it still presents a considerable barrier. In the more general health care sector 17% of respondents had experience with a doctor or nurse who did not approve of gender reassignment, and hence refused services. Some 29% of respondents felt that being trans adversely affected the way they were treated by health care professionals.
At around the same time as this report was published, a report on a survey of GPs by the online service Doctors.net, showed that more than 80% of the 1,000 doctors whom they surveyed believed that trans people should not receive treatments on the NHS at public expense.
Given the findings reported above, the import of such attitudes is clear.
Helen Belcher's research
Helen explained in her presentation that the response to the #transdocfail hashtag begged for more detailed research to investigate the concerns that were being summarised in 140 characters. Without detailed research there would be many ways in which such responses could be dismissed.
She explained that in order to ensure complete confidentiality she had decided to set up a special survey on one of her own company's computers. And in order to do that she had had to register the system with the Data Protection Registrar.
She presented some of the original tweets
In spite of technical problems with the survey system she constructed, her more detailed online questionnaire elicited 130 completed responses.
Of these, as reported above, 98 documented allegations were presented to the GMC in February and the GMC has signified interest in pursuing 39.
There were, said Helen, a further 15 cases which the GMC felt unable to pursue, either because of the passage of time or because of limits in their jurisdiction (e.g. the doctors in questions weren't registered any more).
In addition, since the meeting with the GMC, Helen said that she had received another eleven reports.
Analysis from the responses indicated that:
- 63% of people experiencing alleged abuse did not complain at all, because they didn't trust the system to give them fair treatment
- 21% had had previous complaints dismissed
- 39% of complaints related to GPs
- 17% related to mental health services
- 22% related to gender specialist services
- 24% were not seeking trans* treatment at the time
The audience listened intently to the presentation. Nobody ever likes to hear documented examples of doctors … professionals whom everyone should be able to trust … acting with such callous disregard for the vulnerable people turning to them for help and advice.
Some questioned Helen on how she would continue to carry out such research but I felt compelled to intervene. Clearly Helen had done her part by voluntarily setting up a system to collect evidence of this type … evidence which trans* people had hitherto felt too afraid and distrustful to report.
The evidence was plain … backed up by the preparedness of the GMC to pursue 39 out of 98 cases further … a remarkable indication of their strength.
Previous research also makes plain that there has been a serious culture problem among doctors, subjecting trans patients to "inhumane treatment" (to adopt the language of the Francis report).
I was at pains to stress that I'm sure the vast majority of doctors are not like this.
But I'm equally sure that if you probe a doctor who maltreats trans patients then you'll very likely find that they have a much wider attitude problem, affecting a far larger spectrum of the public.
Trans patients may just be better at flushing out such behaviours, as those disposed to bullying and abuse may feel greater impunity and cover their tracks less well.
So passing this off as a problem for a trans businesswoman to research in her spare time is not an acceptable strategy.
And dismissing these cases as being secondary to the issues thrown up by the Mid Staffs case would also be adding to a problem rather than dealing with it.
The evidence is part of the wider cultural problem identified by Francis. And it is the job of the regulators, professions, and NHS commissioners contracting such doctors to deal with it … not a patient group.
It is clear where the buck stops. Now, it is time to deal with the medical profession's dirty linen.