Wednesday, 6 July 2011

Am I Invisible???

What are you meant to do when you're bedbound and your doctor is ignoring your attempts to contact her?

6 weeks ago, my doctor called me with the results of some blood tests, and about some serious cardiac & gynaecology symptoms I've been having. It had been pretty hard to get in touch with her at the time. My surgery refuses to do home visits for anyone unless they're cancer patients, because they don't have the resources. It's a common phenomenon in some poor inner city areas in the UK especially for people with illnesses like myalgic encephalomyelitis ... but it makes life pretty difficult when you can't leave your house to go to the surgery, and even phonecalls with the doctor are difficult to get about M.E. related issues. Eventually I managed to get a phone consultation with her about a minor infection, (how ironic is that when I have so many more serious things happening??!!??) and I took the opportunity to bring her up to date with more of what was happening with my health, which had led to the blood tests, and her phonecall with the results.

She was apparently very concerned at my vitamin d levels. I'm severely deficient (< 5!) - which is bad as it's probably been going on for years (I've been housebound for 8 years now) and my bones are likely in a serious mess as long term vitamin d deficiency causes Osteomalacia, which is essentially adult rickets. It's also likely that the deficiency is adding to my levels of illness in other ways, such as increased fatigue, pain, and muscle weakness.

We also talked over some serious cardiac & gynae symptoms (See my last post about these issues for more details) I've been having for some time now. She said she was referring me to see the cardiologist & gynaecologist specialists. She said that she would get the paperwork out to me, which I need in order to actually book the appointments - you don't even go on the waiting list until you phone the appointments office with the referral details. She said she was also going to try to get me booked in for 24hour cardiac monitoring before my cardiology appointment so that I'd have that information to take with me.

Additionally, she said she wants to refer me to specialists for bone scans etc because of the vitamin d issue, but would wait on it till I've seen the cardiologist & gynaecologist, because they are 'urgent' referrals (her words!) and I will only be able to cope with so much at once, physically speaking - any appointments outside the house are really major for me. She said that she was going to work out the dosage of vit d i would need (Possibly will need injections) and would call me the next day.

Now, here's the rub. That was 6 weeks ago, as I said, and I've heard nothing from her since, (despite phonecalls from me and my carer to the surgery, and an email from me to her work email address) apart from an acknowledgement that she had received the email, and a promise to reply within 2 days. That was a week and a half ago now!!!

She didn't even send me out the paperwork for the referrals, (though she did put the referrals through) despite phonecalls asking the receptionists to look into it for me, meaning that that's 6 weeks these so called urgent referrals have been put off. I finally received the cardiac appointments paperwork this week - we think the practice nurse may have posted them out - so have been able to go onto waiting list for that apppintment. However, there's still no sign of the gynae paperwork so I can't even get onto the waiting list. As for vitamin d, absolutely nothing is happening, which, considering how freaking worried she was, seems pretty outrageous to me!!!

I really, really don't know what to do now! I feel like I should be very angry ... and I think I am, in some part of my mind ... but mostly I feel really really upset and am losing hope that anything can ever get better with this kind of situation. Hope that I had only just begun to gain back after so many years of being chucked around by the NHS, and losing trust in them to the point that I have rarely seen a doctor over the years I've been severely ill. I really thought that perhaps this doctor would be the one to care enough to give me the treatment any other person with any other illness would automatically get. I guess I was wrong.

Every time I think about all this, I'm tearing up (unusual for me!) and honestly, feeling quite scared to be so alone with such scary symptoms. The cardiac problem especially seems to be getting steadily worse. When I'm upright for a while, like when I have a shower (sitting in my shower chair) my feet are now going so grey/mottled/blue that it's kind of freaking me out - watching that getting worse week by week is the kind of visual aid I can really do without!!! It feels sort of claustrophobic - like I'm trapped in this crappy situation, because there's nothing I can do to make her do the things she promised to do. Nothing I can do to improve this situation. I don't have the energy to fight any harder. :(

I honestly feel that there is no way that this doctor (who's very nice, by the way) would ever treat someone with a different, more accepted illness this way, and it feels so completely unjust and unfair. But there are few options for someone like me in the area I live. It's really hard work to stop myself from falling into hopelessness! I want to be happy and I work to be happy - but this issue makes that fight much, much harder! I feel utterly invisible ... and I'm just so, so tired of having to fight for the simple right to be treated like everyone else.

Am I becoming invisible??
photo by slurpiesandstraws ☮via PhotoRee

..... Read the continuing story in this r
elated post :
 Letter to my GP | The Thing With Feathers

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I'd love to hear your reply and I know it'll be valued by other readers too! I always try to respond, please just be aware that it can take me some time to find the energy to do so as I've been particularly ill recently and struggling to get online. Thanks for reading! :)



  1. I think I can definitely relate. Well, with trying to get medical assistance anyway.

    I find it absolutely gobsmacking at what is going on in the UK especiall with ME patients. I get so mad when I read another new story! Ugh!

    I want you to know something. I know you feel invisible - and perhaps to the NHS you are - but you are not invisible to me. You are always in my thoughts and prayers.

    I wish I knew what the answser is but to be honest I have no idea what to tell you.

    Can you get a new doctor? Of course, getting to a new doctor is a challenge. Are there any in your area that WILL do house visits?

    Just thinking out loud...

    Hang in there. Sending you hugs!

  2. Ugh that is so frustrating!!!

    I'm having a struggle with my doctors too at the moment. I've been complaining of worsening pain for three months and I still feel stuck. It's becoming harder to mangage and while I probably should try contacting them again I'm really too tired to deal with unreturned phone calls and risk looking like a basket case.

    You'd think they would take your vitamin D deficiency more seriously!! That's a little unprofessional- it does cause significant problems.

    Dealing with doctors isn't very fun. I really hope that things get sorted for you very soon. x

  3. im sorry to hear you are being treated in such a way. is there a practice manager you can complain to as its not right how long this is going on.

    also with regards to the referrals you can actually do it online i think, all you would need is to get someone to ring the surgery and find out the password and web address.
    i hope you get something sorted soon, and i totally understand.
    gentle hugs xx

  4. On everything but the vit D, ditto. Just received app for gyne this morn.
    You described the situation perfectly.

  5. Thanks for a great blog entry.

    I avoid contact with the local NHS surgery like the plague now, my dx is FM (fibromylagia) and MCS (multi-chem-sensitivity).

    I fit CCC ME gradual onset, but since having the diagnosis of FM & MCS the treatment I have received has been intolerable.

    Which is what drove me to seek help on the internet, and since ignoring NHS guide lines, and following patient advice from real ME patients. I have slowed the deterioration down considerably.

    cheers fly

  6. Thank you all so much for your comments. :)

    Dominique - It really is quite astounding, isn't it, how bad things have become here. In fact, how bad they are despite decades of research into and experience with the condition!
    Thank you hon ... it means so much that you said I'm not invisible to you. :)

    None of the doctors I've had in the last 7-8 years have been willing to do home visits for me... and I doubt other surgeries in the area are any better, because a big part of the problem is that there's so little money and resources put into this area, and all the surgeries are massively overworked. Too many patients, never enough time. I understand that they simply have to prioritise and that to them, I come way down the pile.

    I love the NHS, (and worked in it for many years as a nurse) but one of the biggest problems with it is that different amounts of money are put into different areas of the country. Poor areas like working class inner cities get a much smaller portion of the pot, and that creates a lot of problems for people in those areas. It means that a) the surgeries can't always meet everyones needs, b) that those areas don't tend to attract good, caring doctors - so the few good ones there are are even MORE overworked than the rest of them, and c) that referrals, treatments, and tests are less readily available for some areas than for others. This is why it feels pretty amazing to even get a NICE doctor in this area, and why I wouldn't consider moving surgeries at this point in time.

    Emily Ruth - I'm so sorry you're in a similar situation!! It's so utterly wrong that help isn't being given where it's needed. :( I understand those feelings of not being sure you can keep calling them, because I have the same worries. ME patients have a bad reputation as it is, so when we keep calling, etc, staff seem to see it differently than if we had a different illness. Completely wrong, but true enough. I hope things improve for you soon! Is there a pain clinic locally that you can ask to be referred to? (I know that isn't a perfect solution in the UK either, but there are some who will take you seriously, so it might be worth a try?)

    Yea, vitamin d deficiencies aren't some minor issue - Osteomalacia can be very serious indeed, so you'd really think that doctors would take it more seriously, wouldn't you! Well, she sounded like she did when I talked to her .. but really, if there's no follow-through, then it's NOT being taken seriously at all, sigh.

  7. Vivacia - Thanks. :)
    I've been rather wary of complaining, because I don't want to make my doctor or the surgery itself irritated with me. Someone on one of the fb groups suggested that I contact PALS, the patient advocacy and liason service (I think that's what it stands for ... something like that anyway ... So that's perhaps an option for me instead. I'm not sure exactly what help they can provide, but I'm going to ask my carer, Anna, to look into it for me.

    Yes that's true, I could just get the password etc from the surgery. I hadn't thought of asking for that. Might be worth a try, since they don't seem to be able to put a form in an envelope and post it for me, lol.

    Anonymous - I'm really sorry you're struggling with the same issues... so difficult! I hope the specialists can help!!

    Fly - Aww thank you for saying that! :)
    I can understand avoiding your surgery, I did that for years ... only going/speaking to them for non-ME related issues like infections ... but it's just got to the point that things are so bad, I had to try again. It amazes me how terribly FM patients are treated in the uk too, considering that there has been so much research into the condition, and there are many treatments available which could be tried. (though I'm sure the MCS makes that much more difficult for you personally!!) It seems to be becoming a more respectable condition in the states, but over here it's still much on a par with ME, I think.

    It's awful that your bad treatment drove you to seeking out help online, but I'm glad that it's helping! I have definitely found so much of value within the online community, too!

    (Gosh that was a post in itself LOL. I can't half talk!! ;))

  8. I do have an off the wall suggestion. You can buy webcams really cheaply on t'internet these days. The cheapest I can see on Amazon is 99p. Since you are able to use the web, and most GPs have access to the internet in their offices (mine is forever googling the terms I use when I speak to her about my ME) it's not beyond possibility that a web consult could work.

    Part two of my off the wall suggestion is to send the web cam to your GP gift wrapped and with a gift tag from you, with your email address and all possible phone numbers.

    If nothing else, getting something so unexpected, and with a point to it, should get a reaction.

    I came out of a marketing management background pre-ME. Getting salespeople to return calls, listen, absorb and take anything at all that marketing have to say seriously was always a big problem, and sending something unexpected (I once sent out pairs of insoles strapped with rubber bands to cans of red bull) actually works! Maybe it will work with GPs too?

    I really hope you can break the log jam soon.

  9. I live in the US and have given up on trying to seek medical attention. I am simply too ill and doctors make no accommodations for this illness.

    Like making you wait and sit upright for hours in their waiting area which is out of the question for me.

  10. You poor thing. I can certainly relate, and it absolutely infuriates me how many supports there are out there for people with other diseases, and how little there is for us. It's definitely not a phenomenon that's limited to one part of the world. Sometimes I think about how much easier my life would have been if it had just been cancer...