Is the NHS System Broken?
We are often asked at GenderGP, how we think treatment for gender variant people on the NHS could change for the better. People tell us they think the NHS system is broken. If that is indeed the case, how can it be fixed? Is it funding, training, attitude? Here we review the current provision of care on the NHS and what we would do to improve the situation for trans and non binary individuals.
In our current NHS system there are three tiers of care:
- Primary Care – this is your local GP surgery provision. All basic preventative and treatment services are performed here. This is your first port of call for your health needs. Your GP will listen to you and make a plan. If they are unable to provide the care that you need, then you will be referred to a specialist. GPs know a little to a lot about all care of medicine.
- Secondary Care – this is your local hospital. Here you will see a consultant and a specialist team in the field of medicine relating to your problem. Consultants have had special training in a particular area of medicine.
- Tertiary Care – this refers to super-specialised services. When a condition is so rare that there wouldn’t be enough cases to have a specialist consultant in that field in every hospital, they have super specialist centres, usually in the major cities.
How common is Gender Variance?
While exact figures are still unclear, a conservative estimate of the number of people with gender variance is around 1% of the population, which is the same as 1 person in every 100.
In the past, it was considered to be very rare and as such a handful of specialists were sufficient to provide the care that was needed. However, as more people have come forward, emboldened by the acceptance of gender variance as part of natural human variation, we have seen a huge number of referrals and the waiting lists alone, for NHS specialised services, can be as long as four years.
What guidance is there for GPs on this subject?
Figures from NHS Digital give us an idea of how common other conditions are:
- Heart disease 1.1%
- Asthma 5.9%
- Cancer 2.4%
- Dementia 0.8%
- Epilepsy 0.8%
- Rheumatoid arthritis 0.7%
So if gender variance is 1%, we can see that it isn’t as rare as we used to think.
What medical care do trans people need?
Not all trans and non binary people have the same health needs. Some people would just like to have some help working out their feelings and to make a plan of how they can happily live their life in their body, however their gender feels to them. Some people may feel distressed by the difference between their birth assigned gender and their true gender. They may want to take steps to align their internal hormones and their external features with the gender that they identify with. For some, this may be just a simple hormone switch, for others it may be a full journey through gender-affirming surgery and genital reconstruction.
Different levels of need
In spite of their differing needs, right now all trans and non binary people are treated in the same way, they are referred to specialist services.
What we have to ask ourselves, given that different patients have different needs, is whether every single trans person needs to be referred to the specialist services, or could some patients be treated in primary care (their GP surgery) or secondary care (their local hospital)?
Many patients that have accessed care though GenderGP have known exactly who they are and what they needed. A ‘diagnosis’ was unnecessary, they knew they were gender variant. There was no need to make a decision on whether hormone treatment was ‘right for them’, they had done all their research, over many years, and just needed help. For some, hormones were the right path and they needed guidance to switch them in the safest way possible.
Some people have waited for so long for NHS services that they had resorted to self-medication, buying drugs from the Internet without a prescription and without access to blood tests and monitoring. All they were asking for was safe, prescription medication and some blood tests to make sure they were on the right track.
Others had more complex needs and were helped by some specialised counselling from our gender expert counsellors. Some were struggling to make sense of their situation and feelings, their medical history not to mention their family and social network. Keeping everyone happy is sometimes very hard!
Is the treatment difficult?
The medicines that are prescribed to trans people are medicines that GPs and consultants prescribe every day.
Puberty blockers that give children and adolescents time to think without puberty marching on, are recognised as being completely reversible and very safe. GPs and paediatricians have been prescribing them for years in the treatment of children with precocious (early) puberty.
The same blocker injections are used in adults to switch off their natural hormone production and allow its replacement with the hormone that matches their true gender identity. These same injections are prescribed by GPs, gynaecologists, endocrinologists, cancer specialists and urologists for the treatment of endometriosis and prostate cancer.
HRT for trans women is exactly the same as it is for post-menopausal cisgender women. The same hormone, the same dose, the same pill / patch, the same risks and benefits. This is very day medicine for GPs, sexual health doctors and gynaecologists.
Testosterone prescribing for trans men is the same as that which is used for hypogonadal men. When the testosterone levels of cis gender men drop, they can go through a ‘menopause’ and have symptoms resulting from low testosterone levels. This is treated with gels or injections – in exactly the same way that GPs, endocrinologists and urologists would treat trans men to make their testosterone levels match their cis male counterparts.
Support through difficult gender journeys can be provided by the same counsellors that help people through other difficulties like abuse, divorce, bereavement and other life stress. Counselling helps people to find a way through their difficulties, whatever they may be.
What do doctors need to be able to provide care?
In order to feel confident to provide care for a patient and for a condition, a doctor needs to know that they are safe and competent to do so. They need to have the knowledge and skills required to provide treatment, and to feel supported by those who regulate them and their services.
Education is usually provided at three levels:
- Medical School – all medical students should have basic education on the needs and treatment of patients of all ages.
- Foundation level – this is straight after medical school where new doctors will learn about the different specialties in more depth, and choose which branch of medicine they may wish to pursue.
- Royal Colleges – once a doctor has chosen to specialise in eg General Practice or Surgery or Paediatrics, the Royal College of that speciality will provide training to make sure the doctor gains the knowledge and skills necessary to provide that service to patients.
There is currently no structured education programme for doctors in the treatment of gender variance at any of these levels. There is no standard medical school training programme. Foundation doctors do not have access to formal education in this area, and none of the Royal College Curricula include transgender care.
The National Institute of Clinical Excellence – NICE – create guidance and treatment recommendations for medical conditions. However there are no NICE guidelines on the treatment of transgender patients.
Who regulates healthcare?
Doctors are regulated by the General Medical Council. The GMC is responsible for creating standards for education and treatment provided by doctors. If a doctor fails to uphold to the standards expected of them, they will be subject to investigation. We have seen many examples of doctors finding themselves under investigation when they provide gender-affirming care for patients. Conversely, those doctors who fail to provide such care are not investigated.
The Care Quality Commission regulates services. They will come and inspect GP surgeries, hospitals, clinics – to make sure the services provided are safe, caring, effective and well-led. The CQC feels that as there are no UK or NICE guidelines on the care of trans patients, it makes standards difficult to set and maintain.
If patients feel that the care that they are receiving from their doctor or from the service that provides their treatment is lacking, then they are able to raise these concerns directly with the GMC and CQC.
So what is the solution?
The incidence of gender incongruence is no longer so small that it warrants super specialised service provision in tertiary care centres.
Many simple cases can be treated in primary care, by your GP. They should undergo simple training to help them provide basic levels of care, just like they do for all other conditions that require medical intervention. If your GP feels unable to help, then your local hospital consultant should step in.
If the case is a bit trickier, then your GP should refer you to your local specialist – this could be a paediatrician or an endocrinologist or sexual health doctor, for example.
If the case is very complex, or requires specialist surgery, then the tertiary centres are fully equipped to provide that extra level of care.
Education and standards
GP surgeries, NHS Trusts, NHS Commissioning Groups, Royal Colleges, Medical Schools, Clinics, Hospitals, NICE, GMC, CQC – all of these bodies need to make sure that anyone providing healthcare to patients is equipped with the right knowledge and skills.
We need formalised education programs, published guidance and set standards. Patients need to know what care they are entitled to, who is going to provide it and what standard of care they can expect.
There are fantastic, gender-affirming international guidelines for the treatment of trans patients. All that needs to be done is for them to be read by our UK healthcare professionals and implemented by those that govern them.
I hear of extra funding being made available. Funding to pay for research, funding to pay for more super-specialists, funding for more specialised clinics.
We have a massive cohort of doctors and nurses in the UK who are more than able to provide this care very safely. All they need is ‘permission’ from their Regulators, ‘education’ from their Employers, Medical Schools and Royal Colleges and most of all they need to listen to their gender variant patients – they are the experts.
They taught me everything I know, and they can teach anyone who wants to listen. If anyone would like to discuss any area of trans healthcare provision, please contact us.