Thursday, May 17, 2012

The Welsh Experience

Let me try and explain my role to you. I am an expert in patient care and support. I am personally responsible for the co-ordination of a number of other health care professionals and supervising a care regime. I frequently have to copy letters and forward them to others, organize test results and send or take them in to clinics who otherwise wouldn't get them. I telephone a number of different hospitals to obtain updates and relay the information back to another. I supply information on one clinic's prescribing regime to the endocrinology department in another. I deal with three, sometimes four different hospitals. The bizarre twist is that I am not a Health Care Co-ordinator or professional, I am a patient, living in Wales, UK, who also happens to be a Trans woman in transition.

As I write, I am still waiting to hear about the next slow moving stage in my experience as a Welsh GID patient. I am not indigenously Welsh even though I have spent the majority of my life here. Born elsewhere but with Welsh grandparents, I came here just to study. I had no intentions to stay particularly, I'm a big city girl and rural life in Wales is not quite me but then I married, had children and many many years later, I'm still here. As luck would have it, I seem to landed myself in one of the worst places to have GID. Don't get me wrong. Wales is a truly lovely place. I live in a coastal resort surrounded by breathtaking scenery. In summer the roads are choked with tourists. There is so much here to see; Ancient history, stone circles, ruined romantic castles, lakes and mountains. There is however a distinct lack of support if you are trans.

Over seven years ago when I began my journey, I was in touch with a number of other trans women in a similar position to myself. They have all long since completed their transitions and in one case are happily married. In my own case it was scarcely over 6 months ago that I was put on a realistic hormone regime. I am currently trying to get through on the phone to The Charing Cross surgical team who I hope will be able to tell me whether they have approached WHSSC. WHSSC is often pronounced 'whisk' here though there is nothing fast or whisk like about how they operate. WHSSC is the Welsh Health Special Services Committee, responsible for commissioning 'specialist' health services within Wales. It replaced the rather ineffective and somewhat discredited Health Commission Wales. Even though Charing Cross hospital in England are happy to offer me treatment, they need the money from WHSSC to pay for it otherwise nothing will happen. This process has sometimes been classified as either a 'formality' or a 'headache' depending on who you speak to.

Would it be too much to ask to be offered a fully co-ordinated, world class service system of care for Trans men and women in Wales? Many of the practitioners exist but this is not their primary role. One day maybe someone will think of asking them to work together, until then, seems like it's all down to the patients!

P.S. still waiting to hear about funding from WHSSC!

Robyn-Jane xx


  1. I still find it bemusing how so many of us are mistreated at the hands of bureaucracy. It gives no pleasure to fight the system but sometimes its the only way.

    Keep banging on the door and I hope you get it answered soon

  2. Thanks, Becca. It's not nice that it has to be this way, in fact it shouldn't be this way at all. While ever it is though I will keep hammering away, watch this space!