Saturday 3 September 2011

The Hospital Appointment...


so a little while ago I went back to my GP and said, please help me, I've been diagnosed with a chronic illness, which prevents me functioning in every part of my life, and to date all I've been provided with is 12 weeks CBT (Cognitive Behavioural Therapy).  So they sent a letter requesting another appointment with the consultant at the Royal Free.  (Dr Gabrielle Murphy)

I had been scheduled to see her again in October- their standard, we see our patients regularly appointment (Once per year).

I have been looking forward to the appointment for some time, although admittedly the evening before and day of the appointment I was nervous about it.  I looked for the letter to check the times etc of the appointment, but couldn't find it.  (I'm usually a person who is organised but I simply cannot do that at the moment, it's as much as I can do to open letters and read them, putting dates into my diary).  I also sought the results of my blood test that they originally did, but was unable to find them either.

I figured they'd have the results on file, and was fairly sure I'd written the correct time in my diary.

I arrived at the hospital at 3.25pm, reported to reception that I had an appointment with Dr Gabrielle Murphy, I was informed that they no longer used that clinic, and that I would need to go down to ICDC on the ground floor.  I asked for directions to get there, when I got to the ground floor there was no mention of ICDC on the big sign with all of the departments, so I asked the main reception.  Oh, the "Ian Charleson Day Centre, you mean?"  "I guess so", I replied.  I was given further, more accurate instructions and found the "ICDC".

I reported to reception, saying I had an appointment at 3.30pm with Dr Gabrielle Murphy, "take a seat" was the response.  "Um, do you not want to take my name, so that she knows I'm here?" I was somewhat flustered by the off the cuff "take a seat".

"No, they don't have a reception service, so you just take a seat and they will come out to see you."
so I took a seat...

And waited.  My body was in pain, extremely uncomfortable, and I was extremely fatigued (Not surprising considering I've been diagnosed with Chronic Fatigue Syndrome/ME).
I waited.

After 20 minutes I returned to the reception, smiled at the guys working inside, and asked politely if there was a telephone number for the fatigue clinic, as I was still waiting for my 3.30pm appointment, and it was now 3.50pm.  A helpful gentlemen said, "I'll go and speak to her, and make sure that she knows you are here."

Excellent, I thought, now at least I can be sure that she knows I've arrived, a few minutes later the nice gentleman returned from further up the corridor, saying that he had spoken to her, and that she knew I was here.

Even better, I thought, now I don't have to worry, I just have to be patient, even though it is quite distressing having to sit here, because of the physical pain and discomfort I was experiencing.

Shortly after the nice gentleman confirmed I was in the right place, and that the consultant knew I was waiting I had to re-arrange myself to be more comfortable.  I went with sitting on the floor, with my head leaning against the chair, with my coat over my eyes to block out the light.  I must have dozed there for a while, half asleep.

A woman said "Are you ok there?"  I looked up, bleary eyed, um yes thanks, I'm just very tired and waiting for an appointment, I was told the consultant knows I am waiting for her.
I felt embarrassed that I was sitting on the floor and awkward.  I told the woman who I was waiting for.

I nestled back into my comfortable position, resigned to wait until the consultant was ready to see me.  The time was now 4.25pm.

The nice woman came back a few minutes later, and explained that Dr Gabrielle Murphy was in clinic 6 upstairs, and that I would need to go up to see her.

I cried.  I'd been waiting for an hour, in pain and discomfort, having asked to confirm that I was indeed in the correct place, and now I was being told that I wasn't.  That the appointment I'd waited weeks to get, I was now over an hour late for, and that I had to now walk further to get to see the consultant.

The nice woman didn't know what to do.  I explained that I was feeling a little over emotional, and how distressed I was that I'd waited so long for the appointment, to be waiting for an hour before being told I was in the wrong place.  She gave me directions to get to clinic 6 that were shorter than returning to the main reception.  She asked whether I would be ok.  "yes, thank you for your help" I responded, grateful to her that she had stopped to ask about my welfare, and grateful that finally, I was going to be in the correct place.

I arrived at Clinic 6 reception, explained the situation.  "Oh yes, take a seat, she'll be with you shortly".  I took a seat.

Around 4.45pm Dr Gabrielle Murphy approached me, I expected a "Hello", or some kind of greeting "Are you Claire Boyles?"  "Yes", I smiled, relieved that I was finally able to have my appointment.  I never received any greeting from her, formal, or otherwise.

The next 5 minutes involved Dr Gabrielle Murphy telling me that it was my fault that I was waiting so long, because if I'd brought the letter with me, it wouldn't have happened.

I pointed out that no member of staff had ever asked to see my letter, and that I had been unable to find it that morning.  One of the most distressing symptoms of CFS/ME for me is being confused easily, not bringing a letter is a direct result of that.

She started reading through my file "I have a letter here from your GP saying that you told them that you're unhappy with our service that we've provided you".
"No, that's not what I said to my GP, what I said to my GP is that I have been diagnosed with a chronic illness which affects every area of my life, and my ability to function and all I've been provided with is 12 weeks of CBT, which while it was useful and provided support emotionally and mentally, has had no significant effect on my physical symptoms.  What I would like is support to understand how I can begin to recover, and create health in my body"

She continued to look through my file... "Well you say CBT wasn't any use for you, there is nothing else we can do for you."

I was in shock.

She continued to say that, graded exercise therapy may have been more suited to me, and that's what Brian the consultant had recommended at the time.

I explained that, at the time I had been doing exercise, and from how graded exercise therapy was explained to me, I didn't see how it differed from what I was already doing.

She read bits & pieces out from my notes, at one point asked why I hadn't attended sessions of therapy.  "I was too ill to go I guess on the day"


I ran out of energy writing this, and had to stop at this point, I haven't had the energy/heart to return to it yet, but decided if I left it any longer, it probably wouldn't get published at all.  It's important to me to publish my blog posts around the time they were written. 


I will add the following, to summarise my visit: 


She barely made eye contact with me, did not assess my symptoms at all (the last time this was done was the initial appointment).

She told me that should couldn't help me, because funding was restricted to one choice of therapy only, and I'd chosen CBT.   And that she couldn't make any exceptions, because if I told anyone in the fatigue community, then everyone would want a 2nd course of treatment...

I asked, if money was no object, what course of treatment would you recommend, her response "Graded Exercise Therapy".

When I asked if the system didn't allow for providing the treatment, how could I go about changing the system?   "Write to Cameron, or Lansley, I think that's his name, he's the Minister for Health".

I was shocked.

After a further few minutes with her head buried in my file, and my looking down at the table, in an attempt to "keep it together" emotionally, I looked up at her, and made a gesture as if to say "What now? I'm at a loss for words".

She then started saying that maybe, if she brought it to the team with the angle of having had the wrong therapy, maybe then I could get graded exercise therapy.

But, if I do this, "You have to promise not to tell anyone within the fatigue community" she said.

"I don't know anyone within the fatigue community"

She agreed to bring it to the team.

I asked her to pass on my apologies to the CBT therapist I'd been seeing, that I'd missed my appointments.

"They don't take things personally you know."

"Yes, but if you could please pass on my apologies to her when you see here, I would appreciate it."

She scribbled a note on the file.

I thanked her for seeing me, despite it being an hour later than our scheduled time.

I left, in shock, in pain, in emotional turmoil.





17 comments:

  1. Hi. Gabrielle has been my consultant for over ten years and I hope I can reassure you your experience is not uncommon.

    She used to be a good doctor, in some ways she still is, but has quite a flair for upsetting people, being inappropriately abrasive and taking out her own personal frustration on her patients to the point of being bizzarre.

    ReplyDelete
    Replies
    1. Thanks for commenting, I am disgusting by the lack of medical care, or any level of care with people who are suffering from a debilitating chronic illness.
      It's 5 years since I wrote this blog post, my health has gotten better but always followed by periods of it being worse. I've recently been diagnosed (aged 40) of having osteoarthritis in both hips. Joint pain is something I've told the doctors about for decades, which has also been dismissed. Right now I'm in despair, devoid of hope that my body will ever regain its health, or even a level which I can function at.

      Delete
  2. I too have seen this doctor - finally after her clinic lost my file for a year but refused to accept this - and found the treatment useless. She is a fan of Wessely and refused to accept CFS as a biomedical condition. A total waste of time and energy! And what a waste of an opportunity to underyake pioneering treatment! Can anyone recommend a doctor who recognises me/cfs as the neuroinflammatory disease it clearly is?

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    Replies
    1. I don't claim to understand "Chronic Fatigue Syndrome" or M.E, but it's been suggested to me that I may have EDS- Ehler's Danlos Syndrome, which I'm currently pushing for a diagnosis (Well over a year since I first asked my GP for a referral). Fatigue POTs and join issues, as well as digestive issues are a group of symptoms common with those who have type 3 EDS, which I now strongly suspect I have.
      I don't understand why people within the medical profession are not fighting for more research into this condition. I feel despair that no one actually wants to help us. I'm a workaholic by nature, I love the work I do, but my health prevents me from doing it, which is upsetting. I'm fed up being told my symptoms are depression and emotional related- it's the other way around, it's REASONABLE to be upset and depressed given our experiences!!

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    2. Sorry I didn't reply sooner, was trying to focus my limited energy on getting myself healthy and to be able to work to have an income to pay for the supplements I need to keep my functioning... This is what happens, people who are treated this badly don't have the energy to follow formal complaint procedures- it's a choice- either invest what little functionality and energy I have into my quality of life or fight the medical profession...

      Delete
  3. I recently had a wonderful experience with Dr Murphy. For three years local doctors have treated me like a hypochondriac, telling me there's nothing wrong with me. Dr Murphy listened to me and did some bloods, and found the reason I am so tired, a simple blood test that my G.P could have done if he had bothered. Dr Murphy was so nice.

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    Replies
    1. I'm so glad you had this experience, so many of us sadly haven't had such experiences. She certainly was far from nice to me.

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  4. I had nearly the same experience today although she was in ICDC. Accused me of lying, told me my incredible GP was incompetent and basically bullied me out the door with a 'nothing I can do'. I had graded exercise and although good it hasn't helped me greatly. Very informative but not much else. She told me of that didn't work nothing will.
    Heartless.

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    Replies
    1. I'm so sorry you too experienced such poor standard of care :(

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  5. I also had a bad experience with Dr Murphy when I saw her in 2010, a year into when my Chronic Fatigue became really severe. Dr Murphy reacted very badly specifically to me wanting to ask her opinion on treatments for CFS outside of her NHS service. My appointment with her ended up with me leaving extremely distressed and crying outside of the hospital for a good 20 minutes. I assumed it was just that she did not like me and that was why she was so unpleasant to me, but I can see now that she has done this to other people too.

    In my opinion none of the treatments for CFS offered on the NHS are of much use and I ended up doing my own research online and experimenting with various things until I found what worked the best for me. I strongly advice anyone suffering from any kind of Fatigue Syndrome to look up Dr Myhill. She is a private doctor specialising in CFS who has a website with a wealth of information to help people manage their own condition. I spent months gradually educating myself using her website but it really paid off.

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  6. Hey All,

    Should I panic this is who I have my initial assessment with next week.

    I did look at the paperwork that was sent out and think, not a lot of that referes to the physical symptoms like pain.

    I have had symptoms masked by other health problems for about 6 years, and now been thrown the diagnosis of ME .

    Does she work with your Pain or is it just therapy that is offered.

    Kind regards

    Kimmi

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    Replies
    1. Hi Kimmi,

      My experience as described here was in 2011, maybe things have improved since then. It's always good to go prepared into any doctor's appointments, write down things you'd like to discuss.
      Ask specific questions, such as "What is the treatment plan which you suggest next?"
      I would recommend bringing someone with you if at all possible. I know that when I do this it helps me cope better emotionally, because the person can give me another viewpoint of what they experienced happening. Generally I've found doctors to have little practical insight or treatment for symptoms of ME. Many believe it is not a physiological condition at all, but psychological.

      Try and connect with ME support groups if you can, I went to a few and found it a little reassuring to know my experience wasn't in isolation, and it wasn't somehow my fault I was being treated in this way.

      Good luck, fingers crossed she's developed some better patient skills since I saw her!!

      Delete
  7. I have had two appointments with Dr Murphy. At the latest, she arrived at the hospital 1 hour after my appointment was due to begin and then found 'her' room had been taken over by another department. I was seen 1 1/2 hours late.

    During the course of the appointment she agreed that as an overweight, single, childfree woman over 40 it was likely I was not being taken seriously. Her comment 'yes, my HIV patients report the same'.

    She told me she did not want me to describe my symptoms.

    I told her of two helpful treatments I had had privately (both are frontline treatments for CFS & fibromyalgia in other countries). She laughed heartily and told me of a patient who had remortgaged her house to have a course of a completely unregulated therapy which hasn't had any research - so a complete non sequitur.

    On being told that my insomnia is dreadful and I suffer pain at night, she offered to prescribe amyltriptiline. I explained I had taken it before and put on 2 stone, and that being overweight is bad a) for my health and b) in terms of being taken seriously by medical professionals. She agreed with me but declined to recommend anything else.

    I told her I had had no success with CBT and thet GET had made me bed ridden for 6 months. She said 'well what do you think I can do for you then?'

    She then suggested a further course of CBT

    In the 6 months since I saw her, DR Murphy has not bothered to write me a follow up letter. Unfortunately - as those of us claiming benefits to live know - up to date letters from medical professionals are crucial for benefits claims.

    I suspect that since the PACE trial was debunked, she has simply given up.

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  8. Hi All,
    Firstly I'm really sorry to hear some of you have had bad experiences. It's the last thing you need with this illness. However, I saw Dr Murphy today for my first appointment and she could not have been nicer. She was brilliant, in fact. She finally confirmed that I had had glandular fever, a subject I've been fighting with my GP to test for since I first got ill. She was supportive and listened and I felt really good about the session. This is not to take away from anyone else's experience, I just wanted to share mine too. I wish you all well. Thanks for reading.

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  9. Hi everyone, I saw Dr Murphy in May 2017 (only time I met her during my treatment, the rest of the time I saw other members of the team. They offered me both Graded Exercise Therapy and CBT). She did seem to take my physical symptoms seriously, and we went through a full history and symptom review. She also confirmed I had had glandular fever in the past (my trigger) and also the presence of thyroid antibodies. She answered my questions and listened to what I had to say. Also we discussed the pathology of CFS/ME (she knew I was a medical student) and did not imply to me she thought the disease was psychological. She did think it was immunological, and we discussed why women are more likely to have immune/autoimmune disorders. There are psychological aspects to every chronic disease because it takes a toll on your mental health and well-being - that is true for most patients. CFS definitely made me feel more down and feel less in control of my life. And so many patients are perfectionists - by reducing our expectations of ourselves that does help to cope with the symptoms. Also Dr Murphy and her team helped me when I needed help with my exam deferrals and disability adjustments by writing to my university whenever required - this was a real lifesaver for me.

    This is my experience, and I’m sorry so many of you have had negative experiences... I wonder if she has changed how she behaves with patients since those days? If so, it’s good that at least current CFS/ME patients are better treated than they used to be. In terms of treatment options, the ones being funded are GET and CBT. However even if she cannot do much for you on the national health, being courteous and respectful costs no money. I’m shocked to hear she was so rude to patients in the past. Patients deserve respect and empathy - her behaviour in those days definitely goes against what is expected of doctors.

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  10. Does Dr Gabrielle Murphy do private work with ME/CFS patients?

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