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The Imaginary February

March 2, 2014

Since getting the private medical report and a diagnosis for Steven’s pain a week ago today, we’ve experienced the sublime and the ridiculous of the medical profession.

I managed to track down the psychiatrist who spoke in court in 2011 and he wrote me a lovely letter on Friday. He remembered me and Steven and was willing to help.

Ironically the day before he contacted me and after a week of trying to make contact with Steven’s own psychiatrist, I got a phone call from her. She had read the report and I was really shocked that she was taking it seriously. She has agreed to accelerate the reduction in the medication (hopefully with the outcome of Steven coming off them all) and we had a great conversation about how to do that and what to have in place if we encounter any problems during the weaning off period. It was all very encouraging.

And now the not so encouraging, I waited all day on Tuesday for the GP to phone me back. Nothing happened. I phoned late on Tuesday afternoon and was told me he would phone me, either after his surgery that evening or Wednesday morning. Nothing. I phoned on lunchtime on Wednesday to be told that he had the day off and to try again on Thursday. Come Thursday, nothing happened, so it took more calls from me and he eventually phoned back at 4.30pm. I could tell instantly that he was miffed. He had read the report and I guess that he didn’t like us going to the clinic to speed up the process. His first comment threw me: “There is nothing in the report about his gall bladder. They may have missed that”. I said that it was a full body scan and if they had found a problem in the gall bladder they would have mentioned it. I reminded him that they had found a problem (in the liver) and that’s where we should be concentrating.

And then came the killer line:

“Mr Neary, have you ever heard of a thing called imagined pain?”

I was speaking from the hall at the time. Steven was in the kitchen having his hair cut. As he was sitting down, he was yelping with the pain. I stuck the phone round the kitchen door and said – “Does that sound imaginary to you?” He then delivered a short lecture on how people can have a pain originally (“Steven did have a kidney infection to bein with”) but once the pain subsides, they become convinced the pain is still there.

I wanted to hit him. A full CT scan has revealed a serious problem and he wants to dismiss it as imagined pain.

I write last blog post that I have a current mission to separate all the people involved in Steven’s care into the useful and the use-less and cut out the latter. They take up so much energy for nothing. In fact, if I continue to engage with this prat, it could have life threatening consequences for Steven. He has to go.

Actually he’s got precious little to offer at the moment. I’m sure the problem is with the medication and it’s the psychiatrist we need on side and thankfully we have that.

After I came off the phone on Thursday, I was ranting to the support worker about the insensitivity of the GP – “He’s putting it down to imagination”. Steven burst the ball of rage:

“Okay Dad. I’ll do it”.

He went over to the stereo and found “Just an Illusion” by Imagination and we sang and danced our way out of my fury.

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From → Social Care

16 Comments
  1. Jenny Allan permalink

    “He (Steven)went over to the stereo and found “Just an Illusion” by Imagination and we sang and danced our way out of my fury.”
    What a hero!! This was the best way to deal with all the anger and frustration. As for the GP, DUMP HIM! There are plenty of kinder, wiser doctors out there. Do a bit of research before signing up.

  2. Mark Grainger permalink

    Mark, am so glad you’ve at least got the psychiatrists on side. As for your GP, they’re two-a-penny, bin him if I were you!

  3. Lisa permalink

    Brilliant stuff. Steven is Ace.
    So many GPs are like this. Needle in a haystack looking for a good one who will see it as priority referring Steven to specialists. Lets face it that’s all they are useful for referring and repeat prescriptions.

  4. Alice Moore permalink

    Hilarious.

  5. Weary Mother permalink

    Now that is a good one? ”You think you have a lump…no, silly, you are imagining it!” ‘Ting’, just saved £10 grand on the practice budget

    • Pauline Thomas permalink

      Mark I must be lucky because my GP says things like ‘Mrs. Thomas you are the expert, you have known your son longer than me’ and when I apologised for taking up his time he said ‘I never push the eject button on any of my patients’. He and his wife are very gentle people. It sounds like you need to change your GP for someone who is less arrogant and has better people skills.

  6. Weary Mother permalink

    I agree Pauline.

    Most GP’s, I have found in the past, go the full mile for their patients. But with GP now the budget holder, etc, we can only hope things stay this way? But it is difficult to understand why the delays for treatment are much longer in some areas, for example some research has shown that people with LD wait much longer for cataract operations than non LD people. Mental Health services are underfunded and stretched to the limit. And accessing good psychiatric health is a mine field….and some call the whole field, a ‘ black art’.. All are the reason that people pay for a good and speedy service..

  7. Sally permalink

    Mark, its pretty straightforward for the GP, he has no call to sulk. If he thinks that the CT scan has missed something or finds fault with the report, he needs to say clearly what the concern is. He could, for example, contact the radiologist who read the scan and reassure himself that the Gall bladder was considered.He could run the scan past the NHS radiologist and get him/her to say if they have any concerns about something being missed. He needs to bear in mind that Steven is in pain and that its reasonable you didn’t want to wait around.

    One thing which is always a concern for Doctors is what they call an incidental finding. We all have a bunch of stuff wrong with us, which causes us little or no problems.A CT scan will find them-but are they the cause of our current symptoms? Often they’ll suggest another test to check that out. Sudden terrible back pain for example, can be due to that wonky vertebra you just found. It can also be (God forbid) a sign of a type of cancer. Best to rule that out. And if the GP or physician doubts that the fatty deposits are the source of the pain and want to rule out any other things, they need to be clear on that!

    In the NHS they are reluctant to just go with private reports as there aren’t the links with the service who did it, and it can be hard to work with private practitioners who won’t have any ongoing role with the patient-unless the patient keeps stumping up. I have a friend,in the NHS who is sick to death of patients coming in and saying: “(Private) Dr X has done A and B and he says you should snap to and do CDE .As my insurance has run out, he won’t have anything further to do with me. ”
    If my friend doesn’t happen to agree that he should do CDE, the patient is outraged-and Dr X has vanished-no payment, no case involvement. So that’s a downside too.That said I have resorted to private reports myself when I am frightened and there’s a long waiting list.
    The GP is not qualified to judge on this. If he wants a review by a physician good idea, and he should get going on the referral. Its out of line for him to offer a snap alternative diagnosis, over the phone. I’d put your queries complaints and requests in writing-he’ll proabaly move faster when there’s a record of the situation which might not look to good to the GMC.

  8. Weary Mother permalink

    Sally
    From what I have gathered you and I have experience of working in the NHS/Mental Health services. We know the good and the bad? Mental health services in the NHS are at best ‘patchy’, and have been for a long time? For money is tight..and clinicians vary? I would always advise people if they can, to find a ‘good’ psychiatrist and pay for consultations. NHS drugs, for mental ill health as we know are too often the cheapest; and can having shockingly disabling side effects. Going ‘private, can lead to ‘better’ prescription by the NHS GP working in tandem with the psychiatrist. I know of a couple of people who pay for their clinics privately, and are retained by their excellent GP’s for support and appropriate medication.

    • Sally permalink

      I agree with you. However, when it doesn’t work, it does lead to what I described above (I was once attacked after saying no to a patient (not mad) whose private Dr had promised her a room to herself that night (NHS waiting list be damned)in the nicest NHS hosptial, not alas his, her insurance didn”t cover that. And I have stood at a NHS hospital and watched taxis come in with private patients who either needed sectioning or were otherwise too unwell to remain in the Private clinic.And/or their insurance or funds had run out. So its hard.
      But really, if Mark’s GP has reservations he should express them clearly and to the limits of his ability. You can’t just offer a snap unsubstantiated diagnosis over the phone. By all means ask to refer to a physician ..

      • Weary Mother permalink

        Sally

        Absolutely right. It is the most complex of scenarios.

        I have just been through three days of absolute hell, through the gross incompetence of a LA and their stupid commissioned service provider; such that it left me first of all in a heap of screaming despair. As that has worn off a bit…… sheer fury, at the harm and pain that together they have caused a lovely very vulnerable person close to my son, is developing. All has been sorted out by me, but not a word of apology from either LA or agency.
        .
        My name today is very very grumpy weary mother.

  9. Weary Mother permalink

    Pauline
    Sam Callannan from Mencap has left his details below your comment, on Marks ‘Champagne after Dols’ post. He wants you to contact him re the stat’s on depression and anxiety

    • Pauline Thomas permalink

      Weary Mother I emailed Mencap this morning before I saw your post and incidently have mailed them a copy of my original letter from 2012 and a copy of the reply to my FOI containing the figures, which they should receive tomorrow.

  10. Weary Mother permalink

    That is excellent Pauline.

    Sam from MENCAP explained to me in his email today, (and I hope I am relaying this accurately,) that it is as yet unclear if the increase, if any, in statistics of anxiety and depression for example in people with LD, is caused by reductions in and removal of services. The increase if any, may be caused by improved NHS marketing of mental health care services to people with LD. And/or the increased accessibility, by a number of means, to mental health services by people with learning disability. More research is needed to identify if there is an increase and if so, causality, …………………..

    • Pauline Thomas permalink

      Weary Mother in the words of Mandy Rice Davies ‘they would say that would’nt they’. Why is he not e-mailing me direct with all this information?

      • Weary Mother permalink

        Pauline,

        Who knows ! At this very moment I am not sure I know my own name. But a ‘weary mother’ is what I am!

        Ask him?

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