Monday, 28 April 2008

Bit of a day and more to come…

I got a letter from Tax Credits awarding me the princely sum of £2.94 per week. As usual it was wrong! There is a fundamental flaw in the tax credits system in that they issue letters containing figures that are at least a year out of date.

You are expected immediately on receipt of the notification to correct the figures by telephoning them. It’s a sort of debt machine whereby you will always owe them.

I’m still in dispute with an alleged overpayment deferred by collection, as I don’t earn enough to enable them to recover it. I complained to recovery saying you’ve just paid me £10.34 increasing the debt. They said not my job and got awards to ring me who when I gave them the correct figure confirmed I wasn’t entitled as I’m so well paid. They did say keep the £10.34 we paid you in error as too low to collect!

Anyway I’ll translate that for you I’m in the poverty trap that Gordon Brown says doesn’t exist because of tax credits – wrong I pay more tax and get no credits. You aren’t getting my vote anymore mate!

Next I get notified that another council house swap is available this time a two bed flat in North London. It’s close to White Hart Lane rail station so 23 mins to Liverpool Street – nice eh? Well once I figured that out as Transport Direct wanted to send me on buses mind you in less than 2 years I do get a bus pass LOL I’m going to see the East London flat in May so maybe I can see this one as well as it’s a big 2 bed that sounds very similar to mine. So come on who wants to share? (Very close to Tottenham Hotspur Ground!)LOL

Then I get Anooshah the researcher from my Union on about my proposed motion for the TUC so we had a long chat about why removing the mental illness classification is the core issue for transgender & transsexual people. She’s a convert. I sent her by email some sites for research in addition to mine of course LOL

Then I wrote to Mosaic who are commissioned to do a documentary by Welcome Trust. Hopefully this will do the job as I’d like to be part of it.

I hope you will allow me to contribute to removing the misconceptions and stigma as regards transsexual people.

I am a member of T&G Unite LBGT forum and an active campaigner for the removal of the mental illness classification that is the root cause of the discrimination against both transgender & transsexual people.

It was abolished in the seventies for gay & lesbian people but we were left behind and a new mental illness created.

I have experienced a particularly difficult transition with my legal rights being constantly flouted by my employer.

I have experienced the wall of prejudice created by the Department of Health & my Primary Care Trust that I have fought with my MP Janet Dean until she gave up recognising that only legal action can ultimately force through change.

I have rewritten my Union Guide to Transgender people in the workplace.

Regrettably I have come into conflict with the Press For Change lobby group that have vested financial interests in maintaining the mental illness categorisation so I trust I will be allowed to provide balance to their views.

I have chronicled my experiences and battles in two blogs Diary of a Biscuit Making Transsexual & Fiona Fox's tales.

After that I finished off the letter to my prospective gender affirmation supplier and a letter to my GP with my input to her application for funding:

Here they are:

Gender Affirmation Surgery with Mr XXX

Having learned that I am expected to undergo a consultation with a psychiatrist prior to the above surgery I am concerned about this requirement.

I have met all the medical and legal requirements to obtain a gender recognition certificate and now have a female birth certificate. This demonstrates that I am totally committed to living the rest of my life as a female and I see this gender affirmation surgery as vital to my well being.

I do not accept there is any need or value for me in the requirement for this additional psychiatric assessment.

I anticipate that the requirement for this additional psychiatric assessment will change when you review your protocol to comply with the Mental Capacity Act 2005 combined with the Gender Recognition Act 2004.

I am however under stress and pressure with respect to my surgical status as for example employees at the factory where I work, aware of my pre-operative status, have threatened me with physical violence.

I am therefore prepared to submit to your requirement for a one off meeting with the psychiatrist, Dr ZZZ, so that there is no delay in undertaking the surgery that will reconcile my body with my legal status, whilst conforming to the protocols you have set up for providing this surgery.

I will advise my GP to include Dr ZZZ £180 fee in the application for Individual Funding to my Primary Care Trust

Notes to complete the Application Form for Individual Funding Process at South Staffordshire NHS\Primary Care Trust

Page 1 of form

I give consent to clinical information to be shared with Individual Treatment Panel and will provide supporting information & accept the outcome in writing.

Condition / Diagnosis details

Summary of current condition for treatment.


Maggie Fiona Fox has met the strict legal & medical criteria of the Gender Recognition Act 2004 and has a female birth certificate. She is considered capable of making her own decisions as defined by the Mental Capacity Act of 2005.

She has been under the care of Dr Richard Curtis a HM Government approved Gender Specialist for the past two years. She transitioned from male to female on 18 November 2005.

Diagnosis:
Transsexual as defined in ICD 10 and free of mental disorder

How will this condition alter over next 28 days.

This condition will not alter over the next 28 days.

Summary of previous related / relevant conditions:

Miss AAA of Queens Hospital Burton upon Trent diagnosed Maggie Fox as suffering from Ankylosing Spondylitis when the condition spread to her eyes as Iritis. She had suffered 20 years of extreme pain from this condition that had eluded the diagnostic skills of numerous consultants. She was subsequently referred to Dr BBB Consultant Rheumatologist and on her insistence was prescribed Phenylbutazone that enabled her to undertake a rigorous fitness regime resulting in her back setting in a relatively small stoop compared to others with such a severe state of advanced AS. She was discharged from Hospital care when Phenylbutazone was discontinued for human use. She has no spinal rotation, severely limited neck rotation and fused ribs such that her chest cannot expand. Her lung capacity is therefore significantly reduced though it is sufficient for general anaesthetic. She will be on anti-inflammatory medication for the rest of her life. Her current prescription is Meloxicam @ 2 X 7.5mg daily.

General Health status:

Maggie Fox is suffering from the combined stress of worrying about the time delay and funding for surgery and the effects of the discrimination at her work place where she has been threatened with violence for not yet having had surgical intervention. Her treatment by reactionary elements of the small market town she lives in is directly related to her not being perceived as female whilst in a pre-operative state.

Page 2 of form:

Details of previous treatments / interventions

Treatment / Intervention Outcome


Progynova 3 X 2mg daily Body has visibly feminised

Cyproterone Acetate 50 mg daily Testosterone level is in female range

Finasteride 2.5mg daily Sufficient hair re-growth for hair weave

Summary of proposed treatment / intervention requiring funding

Summary of proposed treatment:


Consultation, assessment, bilateral orchiectomy, urethral reduction, cliteroplasty, labiaplasty, penile vaginoplasty surgery by Mr XXX at the Sussex Nuffield Hospital and then specialist post operative nursing under the care of Ms CCC.

What are the alternatives and why are they less effective (if none say so).

Alternative State why less effective/not preferred choice


Charing Cross Hospital The critical personalised individual nursing after care is not available for this patient who considers the standards in this hospital to be an unacceptable risk. The hospital’s assessment criteria for surgery fail to recognise her legal status.

Cost of Initial Treatment:

Pre-surgical genital hair removal by electrolysis from the penis and possibly the scrotum at a maximum estimated cost of £1,350 dependent on total area needed to be hair free specified by the surgeon.

Estimate is based on 18 hours of pain free electrolysis at £75 per hour at the London Gender Clinic though a suitable pain free local provider would be acceptable to the patient.

£10,500 fixed price for services provided by Sussex Nuffield Hospital subject to assessment.

Cost of subsequent treatments Frequency

Nil providing there are no surgical complications and genital hair is removed with a 3-month free of charge surgical revision correction period.

Duration / number of likely treatments Frequency

Nine two hour sessions of pain free electrolysis two weekly

Surgery at Sussex Nuffield Hospital Once

Total Cost of proposed treatment / intervention:

£11,850

Page 3 of form

Details of any variation in existing commissioned pathway required to administer treatment (e.g. 3 more outpatient appointments, one less day case procedure)

Not applicable as the new gender dysphoria commission pathway is not appropriate for this patient whose female birth certificate is proof absolute of her having achieved the implicit result of successfully living in a female role.

State any other information relating to this treatment the PCT should be aware of (e.g. previous experience)

Mr XXX the surgeon has never cut a bowel. No patient has ever required a colostomy. The majority of his patients are over 50 years of age and he has performed the surgery before on a patient with Ankylosing Spondylitis. His surgery is considered minimum risk. Only one patient of the hundreds treated has ever-required return to theatre.

The key recovery period of bed rest of 5 days after 12 hours of not being able to sit up requires additional care and pain relief for patients with severe Ankylosing Spondylitis.

Ms CCC is one of only two nurse practitioners recognised by the SMC & BNF in the specialist post operative care of gender affirmation patients and will provide a care pathway based on research but defined by individual patient needs. She heads a dedicated specialist team that have experience of surgical after care of a patient with Ankylosing Spondylitis.

The package price of £10,500 from the Sussex Nuffield can be broken down as approximately £125 consultation, £160 assessment £5,050 Mr XXX’s fee, £4,800 hospital costs, £650 anaesthetist fee. The 3-month postoperative endocrine check post surgery is not charged.

Sussex Nuffield Hospital has not had a case of MRSA or C-difficile

Mr XXX in common with other surgeons that perform the “penile inversion” method of gender surgery recommends that patients have genital electrolysis to eliminate the danger of infection from hair growing inside the body. Surgical correction of damage caused by ingrown hair typically costs £2,000.

Statement of exceptionality

(a) State why the patient is significantly different to the general population of patients with the condition in question to warrant being individually recommended for this treatment:

And /or:

(b) Why this treatment is likely to be of significantly more benefit to this patient than the average patient with this condition:


N.B. If a patient’s clinical condition matches the accepted indications for a treatment that is not funded, their circumstances are not, by definition, exceptional. The fact that the treatment is likely to be efficacious for a patient is not, in itself, a basis for exceptionality.

Under (a)

Maggie Fox has had severe Ankylosing Spondylitis that has left her with permanent calcification of spinal and chest ligaments and reduced lung capacity.

Whilst the reduced lung capacity does not prohibit general anaesthesia as indicated by her varicose vein surgery in 1999 at Queens Hospital Burton upon Trent the time in surgery and enforced bed rest will require additional post operative nursing care in a specialist unit.

Maggie Fox is legally female such that she matches the accepted indications for funding for surgery. Her gender specialist, Dr R Curtis, has considered her a suitable case for surgery since 2006

Page 4 of form

Clinical Effectiveness and outcomes


If no peer-reviewed publications exist please quantity the outcome you expect from this treatment any likely side effects or implications for this patient (with time scales)

The internationally accepted treatment sequence for transsexual people is assessment to eliminate any possibility of mental illness, provision of hormones under the care of a gender specialist and then surgery.

Surgery for Maggie Fox is the final stage of this process having successfully completed the others with no apparent problems or side effects from hormone and anti-androgen therapy.

The surgery will eliminate the need for anti-androgens and the level of replacement hormone therapy should be less.

The surgery will eliminate the major cause of stress in this patient’s life and all postoperative studies indicate high levels of satisfaction with the surgical outcome and enhanced ability to blend in with society’s norms.

She is a former HM Government Computer Security Consultant and union activist for transsexual rights and will most likely be able to extend her work in this area post operatively. She currently works in a biscuit factory.

Whilst a large number of studies have been made all of which indicate a positive patient outcome with minimal side effects or implications none are sufficiently statistically robust to warrant inclusion in this submission.

There are equally no statistically robust studies to the contrary.

End

I believe the rest of the form is merely “tick box” so I leave that to you.

I look forward to seeing the completed form in time to meet the strict PCT deadline of submission of 10 days before 03/06/2008.

I recommend that you send all of the letters from my Gender Specialist plus the PCT commissioning information I have obtained for you from The London Gender Clinic.

That had better do the job or it’s off to the courts which of course reminded me to book my taxi for tomorrow as it’s appeal day with my employer.

As they say – Let battle commence …

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