Sunday, 25 January 2009

"Yes I Can!"

Today my fight back really begins.
In another life I took this photo of a wild African leopard in Moremi Botswana while hanging off the side of a safari truck with one hand, camera in the other. No more than 12 foot between us. No glass or wire just a truck full of meals on wheels (my fellow Botswana buddies) & a herd of impala that this leopard was contemplating having for lunch. All of us together but also alone in the wilderness. Only the scorching midday sun delaying her ambitions. She looked right through me, she was so focused. My fear was gone I was there, in this wonderful place. This was one of the most breathtaking exciting moments of my life. Well times have changed & so has my life. I am in that zone, that focused place ready for the fight of my life.

Below is an extract from the letter that ripped out my heart which I received from my consultant psychiatrist at the local hospital on 23rd Jan:-

"I am afraid the Primary Care Trust Commissioning meeting has decided they are not prepared to fund your gender reassignment procedure with the specialist Dr Thomas in Brighton. The reason appears to be that the trust has agreements with the west London Mental Health Trust Dysphoria Service (Charring Cross). I would imagine you are likely to be disappointed with the decision but I do hope that we can still try to move forward to help you ultimately realise your goals & improve your mental health"

To say I was disappointed was more than a slight understatement. After the initial trauma thanks to the kind love & support I have received from my dear family & friends my spirit is rejuvenated & I am ready to fight. My counsellor has been absolutely brilliant. I could wish for no one better to be in my corner. We have a plan of action.

There are several ways that this ridiculous decision can be challenged

1) By the consultant psychiatrist who referred me on my behalf
2) By requesting a meeting with someone from the Commissioning Team
3) By Formally challenging their decision - (there will be a policy saying how this an be done)
4) By legal action - sometimes the threat of this will cause them to cave in - or a solicitors letter citing previous case law can have the same effect.

My counsellor assures me Do not despair - although you will have to go through an unnecessary battle - it is one that you will win. "YES I CAN !"

The new self belief I have & the way I have bounced back so quickly has been really empowering. I could never have stood up for myself before. I am naturally passive. Assertive was just not me & was something other people had. Something inside me is really changing. I may not have my GRS yet but this normally shy girl is now a woman who has at least finally got some backbone & spirit to fight.

On Monday I am going to the local hospital to see the consultant psychiatrist for an emergency meeting to discuss how best we proceed from here. My beloved Mum has even offered to come along with me for the first time in her life to a medical appointment regarding my gender dysphoria, as a show of support as she now feels so strongly this surgery is appropriate & vital for her new daughter. Never ever in my wildest dreams did I ever imagine our family would be so united over an issue that has cast such a shadow over thirty years of our lives. OMG what a transformation our entire family has undergone.

I want to try & keep things amicable but for me this letter is very assertive by my standards. My fight is not with the excellent medical staff but with the bean counters involved whose decision was made in total ignorance of my condition.

I have written a letter of response to my consultant psychiatrist who referred me:-

"Dear Dr

Further to the letter you sent me dated ## ref #### I have written this reply to express my great sadness & shock at the outcome of the PCT commissioning meeting. I sincerely hope you will help me find the best way to proceed & continue to support me with my case, which is one of clear clinical need.
I have made great progress under your excellent care this year & done everything asked of me to the point my mental health has been stable for the twelve months since I begun my real life experience. I will shortly complete all the necessary criteria for surgery with Mr Thomas & have had over 12 years of specialist gender care. The PCT’s decision will have a direct & negative impact on my mental health. It is a medical fact further delaying my right to the appropriate treatment for my gender dysphoria will have a detrimental effect on my health.
My sincere wish is that you will continue to support my ECR referral from the PCT for my gender re-assignment surgery preferably with Mr Thomas at Brighton.
The fact the PCT has an agreement with the west London Mental Health Trust Gender Dysphoria Service is not relevant to my case, for the reasons already clearly stated in the letter I sent to you regarding my reasons for requesting my Surgery with Mr Thomas which I have enclosed overleaf.
I have consulted my counsellor ## who is a recognised expert in these matters & she assures me the PCTs decision is illegal. I wish to have the details of the procedure for challenging their decision. ## will be contacting the team of solicitors she has worked with on a number of similar cases of which they have a 100% success rate. I sincerely hope this situation can be resolved amicably & fairly so as not to have a detrimental impact on my health or cause unnecessary expense to the NHS.

Yours sincerely"
I am a work in progress & like this battle to be continued. This may all end in tears. I may lose my grip, my focus but I am going to try to hold onto my dream with all my heart!


Anji said...

I'm proud of you Debbie!! Yes you certainly can.

Josephine said...


Now, there is detail to look into, but I too feel that this whole 'agreement' with West London Mental Health (basically the Charing Cross GIC) is a red herring. The GIC at Charing Cross is a mental health service, it doesn't conduct surgery. This is done via surgeons at a range of hospitals here or abroad, including Phil Thomas. Charing Cross can be part of the process of getting you a referral to a surgeon after you've done your 2 years, but that's it. I believe.

If Southampton PCT is claiming that it cannot fund your GRS because of this 'agreement' then it's got itself all tangled up. That agreement with a GIC is surely only for psychiatric referral? Cos that's all West London Mental Health do. Surgery is a different matter, and I don't believe any PCT has an agreement with anyone for that? Don't quote me...check it, but I think I'm right.

In another sense, it sounds from that letter that the PCT hasn't said 'no', quite. It has said, we won't fund you to go to Brighton. You have to go to Charing Cross.


Don't underestimate the ability of the bureaucrats to just get their facts wrong. Sounds like you need to get some chapter and verse.

If you are still seeing the counsellor I think you're seeing (local to you?), then she'll know the drill.

Best of 'em girl!

Lori D said...

Your strength and determination astounds me. Seriously.

Debbie K said...

Dear Anji, Jo & Lori Bless you

I have learned so much about myself this weekend. I have healed more than I thought, I am getting stronger & able to recover from stressful situation better than I ever dreamed possible. I have also discovered how blessed I am to have such wonderful friends both locally & all over the world. I care about you all & you have all been there for me.I will never ever forget you. You have all made such a big difference to my life, you have all touched my heart.

Dear Anji my friend I could not have done it without. You are always one of the first to hold out your hand.

Jo my friend. Thank you, thank you for helping me to discover the spirit to fight. The devil is perhaps in the detail. My original post on Friday was from the heart, a desperate scream for help. As always you are so insightful. I do not require psychiatric evaluation or referral which is as you say ChX main function in this process. I have had all that already. I already meet the criteria for the surgery with Mr Thomas, I have 2 gender specialist who are willing to refer me. I will have completed the 1 year real life experience Mr Thomas requires for surgery in February, after which I could in theory have the surgery. Charring Cross require I believe anything up to 2 years life experience, that is the crux of the matter. This whole refusal is probably a deliberate attempt to delay the process by pushing me into the system at ChX to persuade me to find funding privately. They know in my situation I will not be able to wait up to 2 more years ChX may impose on me & so I will either become ill or simply go away, thus saving them paying for the surgery of a patient they consider very low priority.

Lori You are a star to me. Your emotive words so often inspire me to keep going.

Thank you my dear friends

Nicola K said...

>I have learned so much about myself this weekend. I have healed more than I thought, I am getting stronger & able to recover from stressful situation better than I ever dreamed possible

That's what transition is about Debbie. The change of gender is pretty incidental - it's being able to live and be strong that's the real outcome. And at one level your mother's reaction isn't surprising: she now knows you are a woman just as much as you do.

So far as the PCT is concerned, it's worth reading the new NHS Constitution if you haven't already done so. I'd suggest you quote from it in any appeal / complaint. It's not yet law, but it was signed at Downing Street last week. It's also worth reading about when you may be entitled to treatment abroad (eg if there is a big CHX delay as this could help put pressure on the PCT to allow you to go to Brighton. You should also be entitled to patientchoice in this country. Mental health is excepted, but SRS is not a mental health service so it should be within the patient choice framework. There's all sorts of small print and I've not managed to read that but if they have turned you down on the basis of location not budget, then you have a very strong case. (Indeed you have a case of discrimination of grounds of gender reassignment if they allow patient choice or other elective surgeries but not SRS.) If they subsequently declare there's no budget, it's not going to be believable and you can argue that if they had not discriminated in the first place that they could have planned a budget.

It's possible the battle won't be too terrible. The PCT may try to fight but equally PCTs do try it on an back down in the face a patient clearly determined to exert her legal rights.

PS Sorry to use my other log on but as I was writing so much I felt I needed to rather than the usual one.

Debbie K said...

Thank you , thank you, thank THANK YOU x million for your continued support. Your love has just blown me away.
Ironically while your love has swept me along I have been tempoarily becalmed by a reply from my consultants very kind secretary who is more like a friend to me. She hated having to type this letter & send it to me. She was away on the Friday when I received it. She has sent a really sincere appology & also informed me my consultant is abscent all week on holiday. So the wind has kind of been taken out of my sails a little. With all the excellent help I have received from you my wonderful friends, to fight my case, this may well be a blessing & give me more time to build up my case.

Bless you all

alan said...

A few days to catch your breath and contemplate the options may make things go more quickly when you start in again!

I am so very very proud of you, not only for getting through this, but for reaching out to those who can help and for deciding to stand up for yourself and for the next poor person they decide to do this to as well!

It sounds like you have a strategy and some starting points! I'll be cheering for you!


Christina Langman said...

I love this photo Debbie! I stumbled upon your blog when looking for wildlife art and artists, like myself, and was immediately drawn to your photo of this leopard. What a great capture, and I am so envious of the experience - I long to go to Africa to take my own photos! :) For now, I settle with buying photos from amazing photographers. :)

Christina Langman
Wildlife Artist