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An open letter to my GP

You have been my GP for over 25 years, you know me and my family well and have been there since the start of my illness in October 2015.

We haven’t had the smoothest relationship since my diagnosis of alopecia and ME/CFS, at one point you even rang me up to apologise about your conduct and approach to my condition. You apologised and promised that you would use my case as a learning curve so that any other patient that presented with my symptoms would not be treated the way I was.

After this, I didn’t see your for a while as I was seeing specialists and have been having CBT with the most wonderful, caring and understanding therapist I could have wished for. But, in seven sessions, my NHS input will finish and if I want to continue with CBT, which I do, I will have to pay for it privately. But, myself and my family also felt, in a way, that it’s the NHS washing their hands of me, abandoning me, because they don’t know enough about ME. So, that is why today, myself and my mum came back to you.

We accept that you won’t have all the answers or know everything about ME. As a teacher,  I never knew all the answers but if that was the case, I would research, refer and call specialists so that I could help and support the parents and children in their darkest hours of need to the best of my ability. I would never do what you did to me today.

Today, you sat in front of me and my mum and said that you had no time but that I had all the time on my hands to research, make phone calls, request tests and go privately.

Let that sink in for a minute. You have no time for me.

Now, let me ask you to digest this. Yes, I have time. But it is not my choice, it is not a holiday. I have a chronic, hidden illness that has robbed me and continues to rob me of my life. Myself and my parents have researched, spent money, done everything we can. Every test and specialist I have seen has been as a result of our suggestions to you. But today, we came to you because we needed help and support. We have hit a wall and needed suggestions of people, places, trials or just a simple offer of, “let me see what I can find out and I’ll get back to you.” Instead, you quite simply said you have no time.

Social media has given me a wealth of knowledge about my condition. I’ve heard about countless heartbreaking stories of suicide from patients who have received no help or support, who have simply been left to hope and deal with the cards they’ve been dealt. I’ve read of people no longer having the strength or support networks around them to keep fighting so just live with this illness, not having much of a life. I have never given up hope, yes, I’ve had my dark days, but I’ve always had the hope and belief that doctors and specialists would also not want a 31-year-old woman to just accept this is her life. But today, you changed this. Today, you knocked me down and I felt bereft.

At no point today did you show any empathy or understanding. You commented on my weight several times and yes, I know it is an issue – partly due to the ME, partly because of the drugs I’m on and partly because it’s been an issue for a while. You offered no suggestions of help or support, you asked if I was pushing myself to exercise, suggesting GET – by doing this you further emphasised your lack of knowledge of ME and your lack of bedside manner.

I ask, if you will, just for a minute to put yourself in my shoes and think, could you live like it for a day? Not just with the physical and hidden symptoms but with the loss of work, social life, income, and independence. And then consider how you’d feel after living that way for two and a half years.

I will pick myself up again, my family and friends will make sure of that. And we will keep on fighting. But as my dad said, we now know the NHS has abandoned us and we will have to go forward privately. You have no idea of how that feels, and I hope you nor anyone you know and love ever has to, because believe me, it is a horrendous prospect. It’s lonely and scary, it’s worrying and frustrating.

I would assume that like teachers, you have training each year to update your knowledge. May I suggest that you put forward ME/CFS as an area for all doctors at the practice to learn about, because the thought of another member of our community leaving their appointment feeling like I did today, leaves me heartbroken.

Yours sincerely,

Hannah

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16 thoughts on “An open letter to my GP

  1. Sue Henesy says:

    I am speechless. I cannot begin to imagine your frustration. Even my GP, 24 years ago when virtually nothing was known about ME, showed more understanding. I wish I could be of more comfort or help to you and your lovely parents. However, I am.useless and have nothing to offer but love to you all. So sorry, Hannah. Xx

    Liked by 1 person

  2. Kevin Ball says:

    That’s disgraceful Han. I hope you name and shame this doctor and post this letter in as many places as you can!!!
    Keep strong Han, you have loads of support around you 🤗 Xxx

    Liked by 1 person

  3. Kirsty Randall says:

    Oh my goodness Hannah. What you and your poor family have been through is horrendous but for that to happen is just disgusting. I have experienced NHS doors shutting in my face – the effect on your mental wellbeing is catastrophic to the point where all I personally could think of doing was driving into the first tree I saw. But you must keep fighting and keep strong – we are all behind you. You amaze me in every way possible and how lucky are you Greens that you have each other – you’re an amazingly inspirational family with you at the very heart of it Hannah. Take time to get over this devastating news then i know you will all come back fighting again.
    Sending you all so so much love and an extra special squish to you Han. Lots of love xxx

    Liked by 1 person

  4. Sharon says:

    Oh my *bleeping* goodness me! What a pathetic *bleep* of a man! That is an absolute disgrace. Shame on him!!! He has failed you but i hope this brings you to the door of someone who can offer the support you need xxx

    Liked by 2 people

  5. This is awful, shameful really. I sometimes wonder if there will be a big class action malpractice suit for us when we are validated with the cause of ME/CFS. It wouldn’t change just how much we’ve had to endure but it would hopefully ease the pain and validate the grief and struggle. I’m so sorry that you, me, and so many others are on this journey. It’s still mind boggling how the very people that take an oath to do no harm, are the very ones that do so much harm. Hoping you make headway and can continue with CBT so that you can continue to vent about these very things. I talk about Drs more than anything in my appts. Sending hugs and chocolate 🤗🍫

    Liked by 1 person

  6. nicky hodkin says:

    I am appalled that you have been treated this way. it’s just disgusting to be told they don’t have time. it’s a GPS duty of care to provide support, treatment for your illness…not close the door on you. I will definitely share this Hannah. keep smiling that beautiful smile lovey.sending hugs xxx

    Liked by 2 people

  7. Words fail me Hannah. My partner has ME/CFS. His doctor/s (it’s pot luck who he sees) are no more knowledgeable than yours, but at least make a token effort to be sympathetic, and help with symptom relief when they can.

    Liked by 1 person

  8. Uzma Shaikh says:

    Dear Miss Hannah,
    I feel sorry for the Doctor, she is unprofessional and she is not doing justice to her profession. As far as i know, u r a very strong woman and my prayers and best wishes will always be with u…
    regards,
    Uzma

    Liked by 1 person

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