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Why I decided to go private and why the NHS have their heads shoved up their asses

Former MemberFormer Member Posts: 1,876,324 The Mix Honorary Guru
Okay so first of all the NHS have their selfish heads shoved up their asses. Yeah I sound a bit violent but it's true, they can't even carry out the simplest tasks nevermind follow a basic protocol! So here is the full story in detail.

According to the NHS England Gender Dysphoria Protocol 2013/2014 a GP/Specialist has to refer you to a Gender Identity Clinic even if there is a medical concern however my GP said she'd need to research for a Gender Identity Clinic to refer me to and she was looking In Lancashire, there are no Gender Identity Clinics in Lancashire however I spoonfed her with a Gender Identity Clinic in Newcastle because it has only a 6 months waiting list which is shorter than the one in Leeds.

I booked another appointment a month later to ask my GP if she'd referred me when she said "I am not going to refer you just incase the cyst on your spine is hormone sensitive" by this point she's broke the protocol by not referring me due to a health concern. I told her that it is for the Gender Identity Clinic and my neurologist to work together in making sure it's safe to put me on HRT and by this point she said "Okay I will refer you".

I booked yet another appointment yet another month later to ask my GP if she'd referred me when she lied to me and said she did. I then rang up the Gender Identity Clinic a month later to make sure they received my referral when they didn't receive it so then I contacted my GP's secretary who then said my GP hadn't done a referral.

It just gets better! So my GP is on maternity leave at this point and I decided to ask a covering GP to do the referral when he looked through my medical records and said "I wont refer you because this cyst could be hormone sensative.". So I told him that based on protocols the Gender identity Clinic and my neurolist would work together to ensure if it's safe or not to put me on HRT. He then said "Sorry I am going to have to contact the local Gender Identity Clinic, that's when I told him to contact the Newcastle one instead of the Leeds one because Newcastle one has a shorter waiting list, this is when the GP rudely laughed in my face while saying "Sorry but I have to get in touch with the closest Gender Identity Clinic".

It gets even better! Month later I book an appointment with a protocol on me to see the GP to find out if he'd referred me and he hadn't referred me so I left his office and gave the protocol to the practice manager with a note of complaint that states the protocol hadn't been followed by 2 of the practices GP's.

This complaint didn't go very well so I was left to the NHS's PALS service and to NHS England's complaint system which also didn't make any difference when I attempted to file a complaint.

Sorry for my violence but the NHS are complete time wasting bastards and it's not only the GP's that are being such bastards but the Neurologist also is by putting "Cancer" on my medical notes without a proper diagnosis. One minute I am diagnosed with a cyst and the next cancer and back to being diagnosed with a cyst.

By this point I have spent hundreds of GBP on private healthcare and I am going to be going to a private Gender Identity Clinic in London because I am sick and tired of bad quality services like the NHS messing me about. It's worse than wiping a babies backside!

Comments

  • Former MemberFormer Member Posts: 1,876,324 The Mix Honorary Guru
    Hi XHelenBX :wave:

    I am sorry that you have been having a very frustrating time with the NHS and the GP. I bet you feel very disappointed and hurt that they haven't helped you the way you should have been helped.

    As much as we are grateful and lucky to have a service like the NHS there are times when they do let people down unfortunately. There may have been a sincere concern around the cyst on your spine and was worried about what could happen, has the private healthcare agreed with what the G.P was saying? Have you questioned why they have put cancer in your notes when there has been no discussion about it?

    You have done really well to cope with this and I hope it goes all ok with the private healthcare in London. *hug*

    purple_rain
  • Former MemberFormer Member Posts: 1,876,324 The Mix Honorary Guru
    Hi XHelenBX :wave:

    I am sorry that you have been having a very frustrating time with the NHS and the GP. I bet you feel very disappointed and hurt that they haven't helped you the way you should have been helped.

    As much as we are grateful and lucky to have a service like the NHS there are times when they do let people down unfortunately. There may have been a sincere concern around the cyst on your spine and was worried about what could happen, has the private healthcare agreed with what the G.P was saying? Have you questioned why they have put cancer in your notes when there has been no discussion about it?

    You have done really well to cope with this and I hope it goes all ok with the private healthcare in London. *hug*

    purple_rain

    My Neurologist put me in for another biopsy which I had weeks ago to make sure he knows what he's dealing with yet still calls it a chordoma which really fucks me off. Also I started self medding on HRT.
  • Former MemberFormer Member Posts: 1,876,324 The Mix Honorary Guru
    Hi Helen :wave:

    How are you getting on with the HRT?

    purple_rain
  • Former MemberFormer Member Posts: 1,876,324 The Mix Honorary Guru
    Hi Helen :wave:

    How are you getting on with the HRT?

    purple_rain

    Trying to get monitored however I know exactly how to self HRT. I am starting on 50mg spiro, I've to take 50mg of spiro in the morning and 50mg of spiro before I got to bed. After a couple of weeks I up my dosage from 50mg to 100mg. Because spiro is a dialect my bladder will be extremely active and I will keep having to drink plenty of water throughout the day to replace the fluids which have been urinated out.

    I am also on 2mg of Estrogen which I only have to take once every morning. If I experience headaches and I am properly hydrated then I've to stop taking 2mg and start taking 4mg because headaches are a sign that my body is not getting enough estrogen. Otherwise the headaches are due to dehydration.

    I can also take 1mg of Finasteride which is a DHT (Dihydrotestosterone) blocker to ensure hair regrowth however taking is this is extremely risky and unadvised. 1mg is the safest dose, any higher than that puts at risk of depression and perminantly manic. I am not taking Finasteride however if the spiro is very effective then my hair should grow back if the follicles haven't died off.

    First day on HRT the oils in my skin from the Testosterone in my system had dried out funnily enough! Should go through the first stage of changes within 1-3 months however due to how young I am the first stage of changes could very well come sooner than that however in older people that is very unlikely.

    I also stopped taking Naproxen which I need as pain relief because it is an NSAID and NSAIDs are harsh on the liver. HRT is very harsh on the liver also so the liver has to be in the most healthiest state possible. Other drugs that I take such as Omeprazole, Paracetamol, Tramadol and Amitriptyline are fine to continue.

    I am trying to get an Endocrinologist to monitor me because I am blindly taking HRT. So far I have experienced absolutely no side effects which is excellent.
  • Former MemberFormer Member Posts: 1,876,324 The Mix Honorary Guru
    Hey Helen, it sounds like you've been through a pretty frustrating time with your GP lately and it can't be easy to be told conflicting information. it's good to see you posting at that you feel able to come and vent here. We can't offer any expert advice but we're certainly here to listen and help where we can :)
    XHelenBX wrote: »

    I am trying to get an Endocrinologist to monitor me because I am blindly taking HRT. So far I have experienced absolutely no side effects which is excellent.

    I hope that you're able to make some progress here ^^, taking any meds without professional advice and monitoring isn't something we would advise so we'd urge you to pursue getting some support. It does sound like you know a great deal about it which is a plus and it's also positive to hear that you've not yet experienced any side effects.

    All the best with it, let us know if you manage to get the endocrinologist sorted?
  • Former MemberFormer Member Posts: 1,876,324 The Mix Honorary Guru
    Jo7 wrote: »
    Hey Helen, it sounds like you've been through a pretty frustrating time with your GP lately and it can't be easy to be told conflicting information. it's good to see you posting at that you feel able to come and vent here. We can't offer any expert advice but we're certainly here to listen and help where we can :)



    I hope that you're able to make some progress here ^^, taking any meds without professional advice and monitoring isn't something we would advise so we'd urge you to pursue getting some support. It does sound like you know a great deal about it which is a plus and it's also positive to hear that you've not yet experienced any side effects.

    All the best with it, let us know if you manage to get the endocrinologist sorted?

    NHS England Gender Dysphoria Interim Protocol 2013/2014 states that they HAVE to monitor anyone on HRT however this is a specialist protocol so is not usually followed by GPs because they are unaware of it. If they don't monitor me they are technically violating protocols without knowing it therefore it is my responsibility to show the protocol to the GP however some GPs are known not to play nice and it is my duty to attempt to get monitoring under another GP. I have an appointment on the 12th, I asked for a specific GP who is supposed to be sorting out my GIC referral. If several GPs refuse monitoring then I will pay a private Endocrinologist to monitor me.
  • Former MemberFormer Member Posts: 1,876,324 The Mix Honorary Guru
    Okay so today I went to see the GP asking for a referal but he refused to do so because my neurologist said I can't take hormones so I handed over a protocol that states the GIC wont give me hormones if there is a medical concern and that the GP has to refer me upon request. After showing him this protocol he said he'd refer me.

    Another thing he was checking my sexual characteristics and when I asked why he said he needs to know to tell the GIC but the GIC don't need to know those from the GP. Last appt I had with him he was asking if I was dating. Irrelevant things that I found creepy as there was no good reasoning behind them.

    I told him I was taking HRT and when I asked for monitoring and a prescription he refused to do it. I don't know what to do at this point but HRT is costing me a fortune and I don't want to stop it!
  • Former MemberFormer Member Posts: 1,876,324 The Mix Honorary Guru
    I would talk to gp's in your area and find one that's supportive of your transition. He sound horrible!
  • Former MemberFormer Member Posts: 1,876,324 The Mix Honorary Guru
    Miss_Riot wrote: »
    I would talk to gp's in your area and find one that's supportive of your transition. He sound horrible!

    I only got 5 days left before my HRT runs out and I am psyching out like crazy right now. All GPs do is read my medical notes and refuse because of a mass on my spine. It's NOT the point! I wanted to run in front of a bus before I put myself on HRT and now I want to do it again.
  • Former MemberFormer Member Posts: 1,876,324 The Mix Honorary Guru
    Miss_Riot wrote: »
    I would talk to gp's in your area and find one that's supportive of your transition. He sound horrible!

    I told this GP when I saw him today that before I put myself on HRT I wanted to run out in front of a bus and he said "So you wanted to run out in front of a bus?" as if to say I'm an idiot.
  • Former MemberFormer Member Posts: 1,876,324 The Mix Honorary Guru
    Miss_Riot wrote: »
    I would talk to gp's in your area and find one that's supportive of your transition. He sound horrible!

    Good news! That same GP referred me to a GIC and the GIC requested blood samples from me! :D
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