The tragic farce of primary care for trans patients on the NHS

Ophelia is a painting by British Artist Sir John Everett Milliais, completed in 1852. Currently held in the Tate Britain in London, it depicts Ophelia, a character from Shakespeare's play Hamlet, singing before she drowns in a river in Denmark. It has a market value of £30 million, considerably more than the funding for my GRS which is becoming more of a tragic farce by the day.

I feel rather like Ophelia today. All of my recovery towards better health & hope of a new life is unravelling after today’s further awful news. Worst of all my dear elderly parents are being distressed by seeing their daughter’s health deteriorate all because of what now appears a kangaroo courts sick charade of a forgone decision by my NHS PCT to refuse funding for my gender realignment surgery.
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I will survive, I will get there but right now I have gone from; singing with joy at my new life, to screaming out in pain, on a river of tears, trying desperately to keep my heavy heart from being pulled under for ever. Please God save me & my dear Mum & Dad from this cruelty. I have managed to bounce back & I will try to again. I need to stay strong for my parents. All may not be lost but after the events detailed below I am not sure where it will all end.

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As the consultant psychiatrist who kindly agreed to refer me for consideration for funding for my GRS with the surgeon Mr Phil Thomas at Brighton, is on holiday until Tuesday next week I took it upon my self to try & find out what the appeal process is after it was refused by the panel which met on Wednesday 7th January. I contacted the ECR Commissioning Trust today. I spoke to the person at the Primary Care Trust who had informed my consultant it had been refused. I received a letter from him dated 20th January which arrived on Friday 23rd & sent my health spiralling downwards.
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I was absolutely stunned to be informed by her that I only had 28 days from the date she informed him of the rejection to appeal. With him on annual leave for 10 days & then his secretary on leave when he comes back the prospect of sorting out this nightmare grows ever more unlikely. The appeal has to be made by the consultant psychiatrist in 28 days. I was told if that fails I would have to register a formal complaint with the complaints manager to take the matter further if I wished. After today I am not even going to wait to log my complaint at the PCT's action.

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As I have so little time to prepare more evidence it is very likely to fail again. The news that she was prepared to put a note on my file explaining the absence of my consultant on annual leave was of no comfort. To add salt to my gaping wounds she had the temerity to inform me I should have been told about the agreement the PCT had with West London Mental Health Trust Gender Dysphoria Unit to always send their patients to Charring Cross Gender Dysphoria Service, from the start of my treatment. As my treatment started in 1996 & was originally funded by the NHS her comment was ridiculous. Why this woman had the cruel audacity to ask my consultant just before Christmas why I did not want to go to Charring Cross knowing full well they had this agreement in place was sickening. Neither my consultant nor my own doctor has ever told me about this agreement. My consultant had been asking for clarification of how to proceed with a transsexual patient like myself via the NHS for over a year but to my knowledge was never told of this agreement. NEVER! I had continued to see my Gender Specialist Consultant Dr R. Curtis & attended consultations with the NHS surgeons who specialise in GRS Mr Bellringer & Mr Thomas privately to establish my preference as per what I had been led to believe was patient choice. Suddenly this woman acts as though I should have always known about this agreement with Charring Cross. I was a bit more than Charring ####ing Cross!
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I had been led along a path of false hope all along. All I can do is hope for a cancellation to see my consultant on Tuesday morning & have arranged to leave a note for him to urgently appeal their awful decision. I was contacted later the same day by my consultants lovely secretary who has advised me to log a formal complaint against the City Primary Trust with PALS the patient & Liaison Support. They have cut back all funding at her hospital & she was appalled at my treatment. I have an appointment with my GP on Monday. The mental cruelty the Primary Care Trust has put both me & my dear parents through, not to mention their apparent lack of communicating their supposed procedures/agreements to senior medical staff i.e. my consultant psychiatrist & possibly also my GP is unforgivable.

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I have been advised by my counsellor to contact my solicitors over this matter & will in due course be informing them of the situation.
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After so much excellent medical care to enable me to improve my health it is both negligent & tragic that a Primary Care Trust can treat a patient whose mental health has been stable for over a year so unfairly, causing great harm & distress, showing anything but primary care. Worst of all it is causing my elderly parents great stress as they worry about their daughters diminishing health.

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The bureaucrats & bean counting management are ruining our NHS & demoralising both their brilliant medical staff & the patients they are supposed to care for. Sadly this treatment of a transsexual patient is all to common a reason why patients often have to give up everything they own to go privately. They try to drag out the process so long that we just go away sometimes with tragic consequences.

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I hope PCT do not go on a witch hunt after the kind medical staff who have supported me. There is a risk they may be put under pressure to say they knew of this agreement & had actually told me. If I do not get this right I could be left without any care at all. I hoped to sort this out amicably but what choice have they given me?

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My problem is I do not actually have 28 days to appeal now, the clock was ticking from the day my SCPCT told my consultant psychiatrist which would be around 17-18th Jan.

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The SCPCT neglected to:-

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1) Inform my consultant & his patient/me of their clandestine agreement with ChX .

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2) They also failed to inform him or me of the process involved in referring a patient for an ECR or how to appeal if required, as in this case it clearly is.

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3) They have completely disregarded continuity of care, my readiness for surgery, my right to chose where I go for my surgery, & the financial implications for the PCT.

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4) They have willfully caused great distress to a patient who was stable & doing well with their recovery & in good mental health.

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5) They have willfully caused great distress to the elderly parents of their patient.

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With my consultant on leave for ten days including the day I received the awful news, had I not decided to phone the PCT on the off chance to find out they would have happily said nothing & let the time elapse. How cruel & devious can they be?My poor Mums health is suffering as she is so worried about me. I try to stay at my flat when I am too emotional so she does not see me like that but being out of sight from her she worries even more.

I am none confrontational & normally not a fighter but no one, NO ONE messes with the health of my beloved parents & gets away with it!

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It is my dear Mum I am really worried about. I will be ok my head is still above the water but please can someone help me?

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Love

Distressed & angry

Debbie

"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"

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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!

Dark Night New Day

OMG I feel so humble & grateful to receive all your kindness. I have been overwhelmed by the phone calls, pms & messages of support. I have to catch up with my duties as a carer today but I will get round to thanking you personally when I can. It was kind of ironic on the actual anniversary of my facial surgery to receive this devastating news about the funding for my GRS. I am usually compassionate & passive by nature but dam it I am not going to let my PCT #### me, not until they have given me the right surgery!

I had been expecting bad news. Yesterday I was all cried out. Completely shattered. I could feel the darkness engulfing me & the accumulation of sleep deprivation was making everything seem worse. I have been through too much to give up now. I used to be very susceptible to depression & have what I thought was a very low threshold to stress. I was scared, I was afraid my demons would come back. At times last night I could not tell if I was awake or asleep. It felt like I was counting each minute & I was still awake, at 3.27 I was cold & fearful. I had some nightmarish dream like thoughts last night but the ending was so different.
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"My Lucid dream, A Bridge Tooooooo Far?"
(No alcohol, no drugs, just a mad woman alone with her spirit!)

At 3.27 I was aware of walking on a path on the Itchen Bridge which is in the city I live in & carries commuter traffic over the river Itchen. I was heading towards the middle section & it felt like I was being drawn their by an invisible force. At first that force felt dangerous & threatening.

I was reminded of the demons that once possessed me. I recalled the two nights I had suicidal thoughts a few years ago. I felt so vulnerable so weak & yet something felt different this time. I have too much to live for. I was not suicidal at all, just scared. I remember the shy isolated traumatised girl who had been saved by Angels. That person was me back in Nov 2006 & April 2007 when I came perilously close to the edge. I thought of my beloved Auntie, my Mum's dear sister who had tragically committed suicide when I was a teenager. She was so brave, she had a reason. I saw the pain again & again of my dear Mums anguish. I found myself motionless starring at the Samaritans notice adorning the safety barrier on the centre section of the bridge. I felt the pain & heard the screams of those lonely lost souls who had jumped from this bridge. I could feel my body, I was there but I could not see. This experience felt so real to me. I was shrouded for a moment in complete darkness.
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The menace was then gone to be replaced by a positive life force. I felt warmth. I felt my spirit rising once more. My ripped out heart had healed & started beating again. I no longer felt toxic. My body & soul were healing. I felt a strength, an energy within me begin to grow & grow. I could see again, I could appreciate how far I had come. Crazy random thoughts rattled round my tiny mind. I thought of the first time I came out to my parents. I thought of the magical day in Dec 2007 that I went Christmas shopping with my Mum & danced with joy wearing a woman's coat she kindly bought for me as the first ever present for her daughter. I thought of how precious life is. How important love & friendship is. I thought of the most frightening time of my life as I lay in hospital for the first twelve hours in the recovery room after my facial surgery. Minute by minute gulping for air far away from my family in Belgium. I thought of all the wonderful friends I am so blessed with. I thought of the shy teenage girl who blossomed socially for the first time in her life at the ripe old age of 49 at a packed first night open evening of our art society annual exhibition. I thought of how hard I had tried to do the right things for my family & listen to all the kind help I received. I keep telling myself I am the same person but mentally & to a lesser extent physically I am in such a totally different state. I felt so alive. I could taste the cool air. I could breath, I could touch, I could feel like never before.
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I thought of the friends who were less fortunate, those with incurable conditions, those who had loved & lost or not been blessed with the acceptance I had been so lucky to receive. I could hear their kind supportive voices. I thought of my dear friends inspirational fighting spirit in times of such great adversity. I could feel the tears welling up but they were happy, humble grateful tears.
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Then in this dream scape of a place, somewhere perhaps between heaven & hell, I seemed to float up & leave the darkly swathed shadowy body I had been in & could see myself looking up tear stained with a bright smile on my face. I could see Debbie bathed in the moonlight, the air was no longer cold it was warm. Reminiscent of the haunting painting which I painted in 1996 at the beginning of my journey which I had posted devoid of colour yesterday, I could truly sense Bob had finally completely & willingly disappeared below the waves lapping at the bridge supports. The next thing I knew I was back in my bedroom & it was 3.46.
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Had I still been in the same fragile mental state I had been in when I was living a lie, feeling isolated & desperate, like I had been before I found I had Angels for friends, I may not have coped. By 3.49 the panic attack like feelings were replaced by a calmness of thought.
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My spirit is so different now. My Mum & Dad are standing by their daughter 110% & want to fight this & help me in any way they can. Having their support is beyond materialistic value & absolutely priceless to me.
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I have a life to live for. I have the love & support of my family & friends. I have the self belief & determination to fight back. Out of adversity, has come something good & life affirming. If ever I or the PCT need further proof transition is right for me, how I feel today confirms this girl is now a woman who is a whole lot tougher than she ever thought she was. I need to recharge my batteries but unlike how I felt as Bob I will fight for my rights. I owe it too myself, my beloved parents, my dear friends & the doctors/medical people who have supported me, to fight the bean counting cold hearted people responsible for this cruel decision by my PCT. I am determined not to make my family suffer any more, I am not going to make myself ill. I will get my deformity corrected one day. GRS is very important to me but is only part of my journey not an end. On my darkest day since I transitioned I still have hope in my heart. I will never give up on my dreams. It was a dark night but a new day is dawning.
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Thank you so much for all your love & support.
Best Wishes
Love Debbie

Totally devasted

I have just received the nightmare news I have been dreading. The Primary Care Trust Commissioning meeting decided they are not prepared to fund my gender reassignment procedure.

Right now I feel like my heart has been riped out.

My depression is back with a vengance & I cannot stop crying but please do not worry I am not suicidal, just completely heartbroken.

I need to sleeeeeeeeeeeeeep!

As a fellow Leo how I envy this sleeping lioness & yet........

Just now the echo of all kind of feelings & memories, accumulated during what seems like an absent minded time travellers journey through my life experiences, are roaring inside my head.

My brain feels like like an emotional sponge on overload.

There must be a design fault in these older models. It will just not switch off & my thoughts are resonating around my empty mixed up head 24/7.

This Lioness was living in a nature reserve as part of a captive breading programme in Zimbabwe & the photo was taken in 2005. I wonder if she is still alive & able to live there? How much has her life changed, has she ever truly lived in the wild, does she ever dream of going back to 2005?

I have come too far & have no intention of going back even though I feel incredibly vulnerable. That man mask I felt forced to wear nearly suffocated me. I need to look forward & stay focused.

I am running low on energy & with each tear that passes, minute by minute, I feel I am in grave danger of becoming a toxic friend. This tigeeer has temporarily lost her bounce back ability & with sleep deprivation is not a happy cat.

I read an excellent post recently in a blog by Samantha "green eyed girl" about anxietyhttp://greeneyedggirl.com/category/anxiety/ , something which I am always battling with. I care so much about my family & friends, but really struggle with knowing when I have to step back. This is my dilemma, my fault & is not a reflection or criticism of the people I care about. I am not sure I will ever be able to modify my caring nature but sometimes I realise it is perhaps unhealthy for all concerned. I will not let my anxiety own me. I am certainly not going to let my depression return. I refuse to wallow in self pity any more. Less thought, more action. Perhaps less blogging. I need to make serious changes to keep improving my life.

How I wish I could finally sleep tonight!

Perspective

I have been struggling to get a good nights sleep recently. I had yet another sleepless night last night, as I had just too much on my tiny mind. This is perfectly illustrated by my continued inability to concentrate properly & also get back to my painting. Like so many people in these troubled times, my life seems out of control, my future uncertain, on hold, in void, simply not able to just get on with an ordinary life. I want to get back to work. I would like to financially be able to contribute more towards supporting my family. My love & support how ever well meaning simply cannot pay all their bills. Financial & employment worries, coupled with my deep love & need to care for my parents, which in truth is blurred very badly by my enmeshment issues, are creating quite a difficult challenge. I am so lucky to have the life I have now & this will I hope just be a temporary blip. I need to stay strong at a time when I feel so vulnerable.

I have also been battling my anxiety over my rather obsessive ever increasing need for gender re-alignment surgery. An NHS commissioning panel meet on Wednesday 8th January to discus funding my surgery after they had received a referral for me to be considered for funding via an extra contractual referral. I have been becoming very nervous as to the outcome. I had started to feel the self pity rising up in me, an all to familiar feeling from my not too distant past. My finances, my funding, my transition, my life were all out of my control as were my feelings for a few days. At one point I likened the panel to that of a court judge who could sentence me to a further 6 months, a year, two years or more, in a state of limbo between the genders but that was just me being over emotional. I still have no answer at the time of writing this but life goes on & I cling to the hope that no news is good news.

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Just before Christmas I was told I had failed to get a part time job I had applied for at a local tourist attraction. I have worked there for many years as a volunteer. The job was filled internally by a job share, as so many jobs often are these days. The HR manager was very kind to me & took a lot of trouble to tell me the news in person. This had been my first job application in nearly 32 years. After being employed by just one company for the previous 29 years, this was all a new experience for me & was another landmark on my journey. My first ever job application as Debbie. I was sad but not surprised I did not get the job. I am under no illusion how difficult it is going to be to get back to some kind of paid employment. At one time my career background may have discounted me from applying for certain jobs as I may have appeared over qualified or the salary too low. Times have changed, so have I , so has the world. I asked her if she could spare me a few minutes of her valuable time to give me any advise or feedback on my application so I could learn from the experience. This led me to another first. My first ever real job interview as Debbie. She kindly gave me an hour of her time. To my complete surprise she was so impressed by my enthusiasm & polite positive attitude she said she may be able to offer me a part time role as a receptionist later this year & will keep my details on record for any other suitable position should they occur. Me with all my insecurities particularly about my voice on the telephone & she considered me a possible suitable choice at such a busy tourist attraction. Out of something that appeared a setback something really positive had happened.

I had lost all perspective for a while. I am lucky. I have just had the best year of my life. I have a future to look forward to. The matter of actually paying my way in life again is going to be a tough challenge but I am alive. I have choices. I have so much to be grateful for.

A number of my dear friends have not been so lucky recently. I have one friend who used to work as receptionist & secretary for the same company I had worked for, who has just been told her cancer is inoperable. She may not have very long to live. She is such a sweet gentle person. Another dear friend has found out she has a disc problem in the base of her neck which could render her permanently powerlised. She has had serious back problems for over ten years & often struggles to walk. She used to be a brilliant athletic swimmer. Now she is possibly only one sneeze away from life in a wheel chair. I met her at an art workshop this Sunday where we were were both helping out. She was walking the best I have seen her for a long time but in so much pain with her neck. In typical fashion she still went round every classroom to meet & greet everyone. The operation needs to be done urgently & carries great risk, yet the poor love has to wait until at least the end of February. One of our dog walking friends, who has MS who walks along the path by the river each day come rain or shine with her dog has just been diagnosed with breast cancer. She is having an operation today. My thoughts & prayers are with her. She used to be a school teacher until she had to retire early because her MS became so debilitating she was afraid she may collapse on top of a pupil. She is one aamazing lady. She has a wonderful outlook on life & never ever complains. She is always smiling. She is an Angel, a truly remarkable person. WHY do these terrible conditions have to happen to such kind people? Everything happens for a reason, but why God, why?

My brave friends have a truly inspirational attitude to life, the most incredible life spirit. I feel so very humble & their tragic stories certainly put my worries in to perspective.

Dreams can come true

Life is so precious. The greatest gift of all is life itself but for me the gift of acceptance, which is signified by me receiving this beautiful Christmas Card has made all my dreams come true.

My relationship with my loved ones means the world to me.

Occasionally our needs have exceeded that love & with the best of intentions we have all got things terribly wrong. Our relationship is not perfect. Sometimes it can be unhealthy, we can be too close & over protective. Our true & deep love can occasionally be misguided.

Finding the right balance is sometimes so hard to do.

Our love is really special & to be cherished.

This year has been the most spiritually uplifting year of my life.

I found myself needing to make huge changes to my life which put our immense love at tremendous heart breaking risk. I continually questioned myself is it worth it, for what is actually in the end a huge leap of faith.

I have been so lucky to be rewarded in so may ways. I feel blessed. There is a reason for everything. God moves in mysterious ways.

Never give up on your dreams!

Never let anyone steal them!

Just live your dreams, the rewards can be amazing.

May 2009 be everything you wish for.

Lots of love

Debbie