Funding Setbacks

First, let me update you so you won't be completely lost. Two months ago my GP put in a funding request to my Primary Care Trust for my testosterone prescription. They denied the funding on the grounds that because I had gone to a private gender specialist, I had gone off their "approved transgender care pathway".

3 Days on Testosterone

The trip to London went really well. I had reserved window seats in the Quiet coaches both ways with the added extra of being in 1st class on the way back.

Dr. Curtis was again very nice and supportive during my appointment and he answered all the questions that I had. We talked about getting a hysterectomy on the NHS sometime in future and getting top surgery privately. Both things were just mentioned a little as "next steps"; we'll go over my options in more detail the next time I go visit him. We also talked about different methods of taking T (sustanon, nebido, gel) and I stuck with my earlier decision to use the gel. Dr. Curtis went over how to use it and got three months supply out of his store.

Progress at Last

On the 2nd of February 2012, I travelled down to London for my first visit with Dr. Curtis. It went really well and I hope to see him again in March or April.

For those of you who don't recognise the name, Dr. Curtis is a private practitioner who specialises in trans gender treatment. He doesn't judge, doesn't ask trick questions, and is all in all a very personable yet professional guy.

The appointment itself was a typical assessment appointment. He asked me some questions about my childhood, how long I've felt that I am trans gender, and how I see myself. We talked about everything from the lack of education regarding trans gender issues amongst the NHS professionals to the weather to hormones and surgery. At the end of my hour long appointment, he gave me some papers which included a letter from him saying I am seeing him for treatment for transsexualism and an informed consent form which I will sign when he is ready to prescribe hormones.

The only things I am waiting for before I can make my next appointment are the letter from the psychiatrist stating I am in good mental health and my blood test results. Once I get both of them, I can make my 2nd appointment. Hopefully they won't take too long.

Regarding the NHS and Going Private

Today I made a phone call to Dr. Curtis in London. Dr. Curtis is a specialist in the private sector of transgender treatment and comes highly recommended in the transgender community for both FTMs and MTFs. My first consultation with him is on the 2nd of February 2012.

The decision to go with a private practitioner has not been taken lightly. Over the last nine months, I have done a lot of research on the internet looking through several transgender forums and talking with quite a few trans men and women about waiting times and treatment on the NHS. What I have found has been quite disheartening.  From GPs who don't know the NHS approved pathways to extremely long waiting times between each step of the pathway, the NHS, in my opinion, has failed trans men and women over and over again.

For me personally, there have been several shortcomings with the NHS. In April 2011, I came out to my GP who summarily dismissed it as being "a temporary mental issue" because I am dating a man. (After all, we know that trans men are always attracted to women and never to men, right?) In June, I changed GPs and came out to my new GP as bigender and trans. He was more supportive, but didn't have a clue what the PCT's pathway is nor who to refer me to. It took him a month to make a referral to the local community mental health team and a further six weeks (prodded by me making several phone calls at the 4 week mark) before I got sent my first consultation appointment during the month of September. My second appointment was rescheduled from October to November and I was then informed that I would have to attend a third appointment on the 23rd of January 2012 in order to get my referral to the Gender Identity Clinic.

Up to present time, my transition journey has taken nine months and I don't even have a referral letter in my hand as of yet. According to several people I have talked with, the waiting list to get seen at the Gender Identity Clinic is anywhere from 6 months to a year from referral and another 6 to 9 months before I get prescribed hormones. I am not willing to wait another year or longer just to get a simple hormone replacement prescription - a prescription might I add, that a male assigned at birth person can get in one or two months - therefore, I am going private with Dr. Curtis long enough to get prescribed testosterone and transfer that prescription over to my current GP. 

It is my hope that this blog or at the very least the message contained in this blog gets brought to the attention of someone in the NHS and results in change regarding how transgender people are treated.

FTM Pathway for Halton and St Helens PCT

I received another email from the Interim Chief Operating Officer of Halton CCG today. In his email, he listed the Female to Male (FtM) core surgical procedures. These are the surgeries that are recommended for support and funding by PCTs in the North West of England.

The recommendation of the North West Specialised Commissioning Team is that PCTs support and fund the following core surgical procedures for female to male (FtM) patients where an application has been made by the patient’s clinician:

 

·         Mastectomy

·         Hysterectomy

·         Vaginectomy

·         Salpingo-oophorectomy

·         Metoidoplasty or phalloplasty

·         Urethroplasty

·         Scrotoplasty and placement of testicular prostheses

 

The recommended non-core procedures are not routinely funded.  Requests for funding on an individual case basis can be made and these requests are considered for funding by a PCT in line with existing local

policies for plastic surgery/cosmetic procedures.  It must be stressed that this list is not exhaustive and any other procedure not listed would be considered as non-core procedure until further review.  The following

are non-core procedures:

 

·         Breast augmentation in trans women

·         Reduction Thyroid chondroplasty

·         Rhinoplasty / other facial bone reduction

·         Blepharoplasty

·         Face-lift

·         Hair removal/ electrolysis

·         Body contouring – e.g. suction-assisted lipoplasty of the waist

·         Voice modification surgery

·         Procedures to decrease areas of baldness

·         Storage of gametes

·         Skin resurfacing -  e.g. acid peel (a method of removing the upper layer of skin in order to improve skin smoothness)

 As you can see, mastectomies are considered to be a core surgical procedure for FtMs and PCTs are supposed to fund them.

He also attached a document which details the pathways for transgender people. You can find it after the jump, but be warned that it seems to be out of date in regards to the Gender Identity Clinics that are listed. The document lists Leeds Becklin Centre and Claybrook Centre in London. This is incorrect. The current GICs are located at Seacroft Hospital in Leeds and Charing Cross (CHX) in London.

I have emailed my contact asking for further clarification and will post another blog entry when I receive it.

Transgender Care Path for Halton & St Helens PCT

A couple of weeks ago, I emailed Halton & St Helen's PCT asking why my GP told me that the PCT had not instructed him to follow the Standards of Care for Transgender people as written by the WPATH.

Today I received an email from the Interim Chief Operating Officer of Halton CCG, located at Victoria House in Runcorn, Cheshire, replying to my inquiry which details the basic care path that Halton & St Helens PCT follows. Here is that email:

There is no single universally accepted pathway for patients with gender dysphoria.  There is a recommended pathway that has been established by the North West Specialised Commissioning Team which we follow locally – work in which I was involved in when I worked with that team.  This is based upon the WPATH Standards of Care, often referred to as the Harry Benjamin criteria.  The recommended pathway can be summarised as follows:

 

·       Patient sees his/her General Practitioner for assessment and management of gender dysphoria. The GP refers the patient to a local specialist in gender dysphoria where that is available or to the local NHS mental health provider for access to further evaluation.

 

·       Patient is assessed by the local NHS psychiatrist, who may or may not be an expert in the field of gender dysphoria.  If the local psychiatrist considers the case to merit further evaluation and can rule out the presence of an obvious mental illness that may be the cause of the symptoms of gender dysphoria, the patient is referred on to the Gender Identity Clinic (GIC).

 

·       Depending on the operational policy of the GIC confirmation of funding may be requested from the patient’s PCT before an outpatient appointment is made. It is important to note that the PCT making the decision need to be aware that there could be a surgical cost at the end of the pathway and that this could be several years in the future.

 

·       The Gender Identity Clinic - Experts in gender dysphoria assess the patient and initiate Real Life Experience (RLE), prescribing hormones and monitoring the patient, usually in partnership with the patients own GP.  During this period, patients may additionally require psychotherapy, speech therapy, group sessions and other interventions.  After 12-24 months of assessment, the patient is seen by two consultants (one of whom has not previously been involved with the care and treatment of the particular patient, acting as a second opinion) for a final assessment to judge if the patient is suitable for surgery.  If the patient is considered suitable and is personally ready for surgery, a referral is made to the preferred provider for consideration of Gender Reassignment Surgery (GRS). 

 

·       The provider of GRS requests confirmation of funding for surgery from the patient’s PCT and provides an outpatient surgical consultation appointment once funding is confirmed.

 

·       The PCT considers the request for funding and once it is ensured that the patient meets the criteria, confirms funding for GRS.

 

·       Patient undergoes appropriate GRS and returns to follow-up with GIC.

 

·       Patient discharged from GIC when appropriate and returns to primary care for maintenance hormone therapy and monitoring, if appropriate.

 

You will have to travel for aspects of this care, such as assessment at a GIC and, should you wish to have surgery, for surgical interventions, as there are no local services due to the specialised nature of the interventions you require.  You should, however, expect support from your GP in terms of arranging ‘shared care’ and local monitoring working in partnership with GIC to minimise travel to and from these centres.

 

To summate, Halton GPs are following the WPATH Standards of Care and recommended pathways based upon these.  This said, there is clearly a need for improved liaison between the services providing specialised interventions and your GP to enable them to deliver as much care to you locally as possible.

 This path, as outlined above, is missing one thing though. According to my sources, Halton & St Helens PCT refuses to fund the top surgery for both FTMs and MTFs. Knowing this, I emailed a reply back asking if this was true and to be given the PCTs policy on funding for surgery. When/if I get a response, I will post it up here. 

If you have any questions, please comment below and I will either answer them (if I know the answer) or will forward them to my contact in the Halton CCG.