Open Letter to Sajid Javid MP

Sajid Javid is the Secretary of State for Health for England. TransActual co-ordinated a letter from over 100 trans men which was sent to him in September 2021

2nd September 2021

Dear Secretary of State for Health and Social Care,

We the undersigned write to you as just some of the people impacted by the failure of the NHS to provide phalloplasty or metoidioplasty, two key gender confirming surgeries for trans men and for non-binary people who were assigned female at birth. These surgeries are also performed on non-trans patients, who require genital reconstruction as a result of traumatic injuries.

As expected, the performance of these surgeries was paused at the start of the COVID-19 outbreak. However, whilst most ‘elective’ surgeries re-started in April this year, phalloplasty and metoidioplasty did not. These further delays were not caused by COVID-19, but occurred due to a decision by NHS Specialist Commissioning to withdraw the contract to perform these surgeries from St Peter’s Andrology Centre, the only UK based surgical team commissioned or able to provide them.

This has resulted in hundreds of men and non-binary people facing an indefinite wait to undergo these life-saving operations, with some now ‘stuck’ between stages of surgery, and others desperately awaiting surgery to repair painful and life-limiting complications.

When we first asked for information about the situation, we waited months for a response. When the Gender Dysphoria Referral Support Service did write to us, they told us that they were close to finalising the contract and expected completion in July 2021. It is now September and there remains no NHS provision of phalloplasty or metoidioplasty.

The current situation is a nightmare for trans men and non-binary people and we ask you to urgently put measures in place to support us.

1.      Please remind the NHS of its obligation to ensure that trans men and non-binary people can access genital reconstruction surgery.

The ruling in the 1998 case of North West Lancashire Health Authority v A, D and G makes it clear that provision of transition related surgery is included within the requirement to provide a comprehensive health service, as set out in the National Health Service Act (1977). By not providing genital reconstruction surgery to trans men and non-binary people, the NHS is failing to meet this requirement.

2.      Please instruct the NHS to provide specific and immediate mental health support to anyone on the waiting list for a phalloplasty or metoidioplasty.

As a direct consequence of the current situation, many trans and non-binary people have experienced relapses of mental ill health, worsening symptoms of gender dysphoria, and are left unable to plan for our futures. Many of us awaiting our second and third surgical stages feel that we have been left “unfinished”. When we consented to the first stage of surgeries, it was in the understanding that our genitalia would be left “ambiguous” for no longer than 6 months. At the time of writing, this six-month timeframe has been exceeded in dozens, if not hundreds, of cases. Despite these extremely distressing circumstances, the NHS has provided no mental health support to those affected.

3.      Please instruct the NHS to provide funding for trans people to access phalloplasty and metoidioplasty overseas until such a point as the UK team (once it has been commissioned) has significantly reduced the waiting list.

Many of us awaiting repairs to surgical complications are in pain. When we consented to our surgeries, it was in the understanding that any complications, particularly painful complications, would be rectified in a timely manner. We did not consent to being left in pain or with ambiguous genitalia for years on end.

During the time being taken to re-negotiate the NHS contract, our surgeries could have been provided overseas. Individual funding requests can be granted for other patients unable to access their treatment in the UK. Furthermore, The National Health Service Commissioning Board and Clinical Commissioning Groups (Responsibilities and Standing Rules) Regulations (2012) state that the relevant service must refer patients to alternative providers if they have been waiting more than 18 weeks for treatment. It would not be an exaggeration to say that the vast majority of those waiting to undergo phalloplasty or metoidioplasty have waited far longer than the advised 18-week period, with no offer of referral to alternate providers forthcoming.

4.      Please instruct the NHS to fund hysterectomies as stand alone procedures for any patient on the waiting list for phalloplasty or metoidioplasty.

For many of us, a hysterectomy forms an important part of our medical transition which alleviates a significant amount of distress. This is typically conducted as part of the phalloplasty or metoidioplasty surgeries. Due to the lack of provision of these surgeries, those of us who experience endometriosis, cysts and other gynaecological issues have been left in pain. Many of us have been refused access to a hysterectomy as a stand alone procedure, as it will be conducted as part of our phalloplasty or metoidioplasty. Whilst there is currently no NHS provision for phalloplasty or metoidioplasty, there are hundreds of NHS doctors experienced in carrying out hysterectomies.

And finally, we ask that you instruct the NHS to apologise for not notifying patients about the situation in a timely manner and for failing to fulfil their duty of care to those impacted.

Yours,

Chay Brown – waiting for stage 2 phalloplasty

Keelin McCoy – waiting for stage three and major repairs, I require constant pain killers as a result

Stephen Whittle

Shane Jennings – waiting for stage 2 phalloplasty

T.J. – waiting for stage 3 metoidioplasty and mons resection

Kyle Bradshaw – waiting for stage 1 surgery

Jacob K – waiting 4.5 years for stage 2 phalloplasty

R.Y. – waiting for metoidioplasty

Troy Kilgannon

Kaiden – waiting for stage 3 phalloplasty

Jake Brimstone – waiting for stage 2 phalloplasty

Nate Sanger-Davies – waiting for stage 1 surgery

Eddie – waiting for stage 2 phalloplasty

Stuart S. – waiting for stage 1 surgery

Denny Manderson – waiting for stage 2 lower surgery

Toby Axel – waiting for stage 1 phalloplasty

Cade Rich – waiting for stage 1 metoidioplasty.

Trans person – waiting for a repair operation from stage 1 to fix a large hole in my phallus.

D.T. – waiting for stage 2 phalloplasty

Mitch – waiting for stage 3 phalloplasty

Octavian Starr – waiting for replacement erectile device

Chris S – waiting for stage 1 metoidioplasty

Leo Oxtoby – waiting with a fistula for stage 2

R. Torridon W. – waiting for first stage metoidioplasty

Khristopher Hayes

Nathan – waiting for stage 2 phalloplasty

Aedan-James McCarthy – waiting for consultation

Ishmael Johnson – waiting for repairs then stage 2

Dr S. H. B. Roberts – waiting for stage 1 phalloplasty.

Ethan Levi Cain – waiting on 1st consultation with surgeon

Isaac Phillips

Adam G – waiting for stage 1 of lower sugery

J. – waiting for stage 1 phalloplasty

Jamie Woodcock – waiting for 1st stage phalloplasty

Anthony Stewart – waiting for stage 2 lower surgery

Ryan McLeod

Mark Raymer – waiting for stage 1 phalloplasty

AG – waiting for metoidioplasty

S. Doyle – waiting for stage 1 post-op consultation and stages 2 and 3 metoidioplasty

Dylan Gallagher – waiting for repair

Alex S – waiting for stage 1 lower surgery

Alex Harker – waiting for stage 2 phalloplasty with urethra repairs

Harry Gavroche Jones – waiting for stage 2 phalloplasty

E. – waiting for stage 1 phalloplasty

Mr Sam Edwards

Samuel Humphris – waiting for stage 3 metoidioplasty, I had stage 1 in 2015

Maarten – waiting for surgical referral

Vic Alan James Rolfe – waiting for stage 2 phalloplasty

Kryztof Warzecha – waiting for 3rd stage and repair  to my urethra

Alex Jones – waiting for stage 1 phalloplasty

Lewis Hancox – waiting for stage 2 phalloplasty

Max Cohen – waiting for stage 1 of lower sugery

Jordan Coole – waiting for stage 1 again after a failed operation in 2019

Alex Thompson – waiting for stage 2 phalloplasty & repair.

Alix Coe – waiting 2 years for corrective surgery, have significant leak in urethra

Oliver Lloyd – waiting for stage 2 metoidiplasty

Terry Townson  – in my third year of waiting for stage 3 phalloplasty

Thomas Edwards – waiting for first stage phalloplasty

Alex – waiting for stage 3 metoidioplasty

Nathanial Skilton – waiting for stage 1 phalloplasty

Ed Davies – waiting for stage 3 surgery

Pj Vesey – waiting for phalloplasty

Tyler Ivor Cannan – waiting for stage 1 RFF phalloplasty

J Gooding – waiting for stage 1 surgery

Sascha Eley – waiting for repair to my urethra and stage one phalloplasty.

Kyle – waiting for stage 1 phalloplasty

Charlie Kiss – waiting for repair to implant

Arthur Fewings – waiting for hysterectomy and metoidioplasty

Elliott Way – waiting for stage 3 phalloplasty

Marcus Paterson – waiting for Stage 1 phalloplasty

Kieron – waiting for stage 2 phalloplasty

Vinnie Longwe – waiting for a long time

Lee Thomas – waiting for stage 3 repair

Jeremiah Stephenson – waiting for stage 1 surgery

Evan – waiting for metoidioplasty

Corey Lonergan – waiting for stage 3 lower surgery

Nico – waiting for stage 1 lower surgery

Oliver – waiting for stage 1 phalloplasty

Zachary – waiting for stage 2 and 3 metoidioplasty

Harri Messenger – waiting for stage 1 phalloplasty

Freddie Oliver – waiting for stage 1 phalloplasty

Mitchall Thomson – still waiting for stage 1 radial forearm phalloplasty

Charlie Campbell – waiting for Stage 2 phalloplasty

Benjamin Brookes – waiting for phalloplasty

Zachary – waiting for stage 2 and 3 metoidioplasty

Jak Furlong – waiting for repair after a mistake was made at stage 1

Adam Shepherd – waiting for stage 1 phalloplasty

Braxton Gilson – waiting for stage 2 abdominal phalloplasty

Cole – waiting for stage 2 phalloplasty

Ryan Lowe – waiting for stage 2 metoidioplasty

Ricky Curtis – waiting for stage 2 phalloplasty

Sammuel Grant – waiting for stage 1 lower surgery

Jonas – waiting for Stage 3 phalloplasty, unable to function normally without it

Jack Timothy Cannon – waiting for stage 2 phalloplasty

George Lewis – waiting for repair, to finish off phallus and stage 3

River Lismer – waiting for stage 3 pubic phalloplasty

Tristan – waiting for stage 1 phalloplasty

Arnie – waiting for stage 3 lower surgery

Tony Nicholls – waiting for a replacement erectile implant that was due in 2019

Jack Lyus – waiting for stage 1 phalloplasty including hysterectomy

Riley Campbell – waiting for stage 1 phalloplasty

Harry – waiting for stage 2 lower surgery

Leo Adams – waiting for consultation

J.B. – waiting for stage 2 metoidioplasty

Jenson – waiting for lower surgery

Cassian Lodge – waiting for metoidioplasty

 

Because of the personal nature of these surgeries and because being named in an open letter brings with it a risk of transphobic harassment, a great number of those impacted by the situation wished to lend their anonymous support to this letter. They are:

Male aged 51 – waiting for repairs to phallus and urethra post stage 3

Trans man aged 24 – waiting for stage 1 phalloplasty

Male aged 57 – waiting for metoidioplasty

28 year old man – waiting for repair surgery

Male aged 26 – waiting for stage 1

Male aged 30 – waiting for stage 2 metoidioplasty

Male aged 27

Male aged 41 – waiting in physical pain for a repair to erectile device

31 year old male – waiting for repair op after stage 1

23 year old man – waiting for metoidioplasty and hysterectomy

24 year old male – waiting for stage 1 phalloplasty

29 year old male – waiting for stage 1 surgery

27 year old transgender male – waiting for stage 2 metoidioplasty

Male aged 35 – waiting for stage 1 phalloplasty

27 year old man – waiting for stage 1 phalloplasty

26 year old man – waiting for metoidioplasty repair and stage 3

51 year old man – waiting for metoidioplasty

Man aged 36 – waiting for metoidioplasty

Male aged 31  – waiting for stage 1 surgery and desperate for hysterectomy

Male aged 23 – waiting for stage 1 surgery

Man aged 28 – waiting for stage 2 metoidioplasty

28 year old male – waiting for stage 2 phalloplasty

Male aged 28 – waiting for stage 1 phalloplasty

26 year old man

Male aged 29

Trans man aged 43 – waiting for stage 1 metoidioplasty and hysterectomy

Male aged 29

Trans man aged 30 – waiting for surgical consultation

Male aged 25 – waiting for stage 2 phalloplasty

Trans man aged 33

29 year old man – waiting for stage 1 surgery

Trans man aged 23 – waiting for first stage of phalloplasty

26 year old trans man – waiting for stage 1 phalloplasty

26 year old man – awaiting stage 2 phalloplasty

Trans man aged 30 – waiting for further surgery after stage 1 phalloplasty

Male aged 27  – waiting for stage 1 lower surgery

Male aged 33

Trans masculine person aged 27 years old – waiting for stage 1 surgery

22 year old man – waiting for stage 1 phalloplasty

27 year old male from Kent – waiting for stage 2 phalloplasty

Male aged 27 – waiting for surgical consultation

Trans man aged 37 – waiting nearly 5 years for stage 2 phalloplasty

Trans man aged 23 – waiting for surgical consultation

Trans man in my 50s – waiting for further surgery after stage 2 phalloplasty

22 year old male – waiting for stage 1 phalloplasty

Male aged 32 – waiting for stage 1 surgery

33 year old man – waiting for stage 2 phalloplasty

Male aged 34 – waiting for stage 1 ALT

Trans man aged 22

Trans man aged 32 – waiting for stage 4 pubic phalloplasty – erectile and testicular implants.

Trans man aged 26 – waiting for stage 1 phalloplasty

Male aged 25 – waiting for stage 2 phalloplasty

28 year old man – waiting for stage 1 phalloplasty

Male aged 43 – waiting for stage 2 phalloplasty

31 year old trans male – waiting for erectile device repair

Male aged 35 – waiting for stage 2 surgery

Male aged 48 – waiting for stage 2 phalloplasty

Man aged 27 – waiting for stage 3 phalloplasty

27 year old man – waiting for stage 1 phalloplasty

Male aged 31 – waiting for repair

Male aged 24 – waiting for stage 1 phalloplasty

25 year old man – waiting for stage 2 phalloplasty

23 year old trans man – waiting for stage 1 surgery

Male aged 43 – waiting for stage 3 phalloplasty

Trans man aged 26 – waiting for stage 1 surgery

Non-binary man aged 24 – waiting for stage 1 metoidioplasty

38 year old man – waiting for stage 2 phalloplasty

Male aged 26 – waiting for stage 1 phalloplasty

Trans male aged 29 – waiting for stage 2 phalloplasty

Male aged 30 – waiting for stage 2 metoidioplasty

30 year old trans male – waiting 4 years for corrective urethral surgery and cyst removal