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Help, Advise wanted !!!

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Health1212
Health1212 Community member Posts: 3 Listener
Hi everyone, I have osteoarthritis in hands and suspected osteoarthritis in hip and knees. I have started physio once a month on the NSH but the therapist has decided the chronic pain I’m suffering is coming from the brain, real to me but apparently not to my Symptoms, he talks in terms I don’t pretend to understand and writes up on the computer things I’m  not agreeable to refusing to remove. I feel so frustrated, it’s like I’m part of an experiment but in order to get my quietly of life back I still attend . This has broken me , it affects my sleep and mind
I’m not an attention seeker, I’m a 62 year old woman , I was made redundant last year having held my last job for 18 years
what ever noise I make it appears I’m in typical accordance of the pain brain paper he rants on about and the National health use . 
Any help would be most welcome 

Comments

  • Health1212
    Health1212 Community member Posts: 3 Listener
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    I think the question is how do I resolve
    Have I the right to ask for this to be removed from my medical records
    is there any said person I can go to for help
    am I allowed a family member to accompany and oversee
    am I allowed a print out of what’s written on the computer 
  • Tori_Scope
    Tori_Scope Scope Posts: 12,503 Disability Gamechanger
    edited January 2022
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    Welcome to the community @Health1212 :) 

    I'm sorry to hear that you're not happy with what the physiotherapist has said and recorded. It can definitely be confusing when they use terms you're not familiar with. Have you tried asking them to explain a little more about what they think the cause of your pain might be? Have you spoken to your GP about how you feel about what's been said?
    Have I the right to ask for this to be removed from my medical records
    I'm not actually sure what the rules around this are. Rethink have some information about medical records, which you might find helpful, that includes the following information:
    What if the information on my record is wrong?

    The information in your records should be correct and up to date.

    Some of the information will be a professional’s opinion. A health professional may have written an opinion about you that you think is wrong. The NHS won’t usually remove these opinions from your record. They need to keep this information because it shows why they made decisions about your care and treatment.

    It’s unlikely that the NHS will delete or remove information from your records unless it is factually incorrect. Like the wrong address or date of birth.

    If your doctor agrees that the information is wrong, they may add a correction to your record. If your doctor doesn’t agree with you, you should be able to add a note showing this.

    You should write to the record holder to tell them what you think is wrong and explain why. It’s a good idea to send this letter by recorded delivery.
    am I allowed a family member to accompany and oversee

    I believe you should be allowed to bring someone to your physiotherapy appointment if that would make you feel more comfortable, yes. 

    am I allowed a print out of what’s written on the computer 

    That same page on the Rethink website contains the following information:

    How can I see my records?

    Ask the service

    You have the right to see your health records under the General Data Protection Regulations (GDPR).

    If they refuse, you could try making a ‘subject access request’. We have explained this below.

    You could ask to see your records during an appointment or over the phone. If they agree, this is a quick and easy way to see your records. They could show you the notes on paper or on a screen. But they might not give you a copy of your records this way. You may have to make a subject access request to get a copy or your local NHS trust can tell you how to apply.

    Patient Online

    Some GP surgeries are letting patients sign up to ‘Patient Online’. This lets you look at your health records online, as well as book appointments. Not all GP surgeries have set this up yet.

    Ask your GP surgery if you can sign up for Patient Online.

    Subject Access Requests

    You can use your right to have a copy of your health records under Article 15 of the General Data Protection Regulations (GDPR). This is called making a ‘subject access request’.
    You can make a subject access request in writing or by speaking to the service. The service might have a form they ask you to fill out.

    Your local Patient Advice and Liaison Service (PALS) might be able to help you with a subject access request. You can search for your local PALS office at: www.nhs.uk/service-search/otherservices/Patient%20advice%20and%20liaison%20services%20(PALS)/LocationSearch/363
    In your request, give:
    • your name,
    • address,
    • date of birth, and
    • any other information which would help locate your file.
    Explain that you are making a subject access request under Article 15 of the General Data Protection Regulations 2018.

    You don’t have to tell the service why you want to see your records. But you may have to show them some proof of your identity.

    You don’t have to fill in a special form when asking to see your records. But some services might ask you to, to make the process faster. Ask the service first if you are unsure. If you can, you should send your letter or form by recorded delivery. You can also use the sample form by downloading this factsheet using the button above.

    Does that help at all?

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  • Spoonbill
    Spoonbill Community member Posts: 70 Courageous
    edited January 2022
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    Hi @Health1212. Based on what you write, I can't help but wonder if a caseworker won't be needed to investigate the facts here? For example, do their notes amount to a psychological assessment, are they basing this purely on their own observations, are they qualified to practice in this capacity and are they assessing you according to the necessary psychological standards of practice?
    While I'm personally more than ready to believe that a patient were being gaslit for expediency, I hope you understand that it would be reckless for me (a layperson) to assume anything. For argument's sake, however, if they were a qualified physiotherapist, and unqualified to practice clinical psychology, and if the gov.uk statement here is correct, it would appear that that the necessary membership standards require that (quote):
    "3.1 You must keep within your scope of practice by only practising in the areas you have appropriate knowledge, skills and experience for. [sic]
    3.2 You must refer a service user to another practitioner if the care, treatment or other services they need are beyond your scope of practice."
    There may be all kinds of ins and outs that I'm unaware of, of course (hence, I would be seeking advice through a caseworker). Hope that's not out of order - I've tried to be as objective as possible. If that all sounds reasonable, you might start by confirming their qualifications if you can (see letters, ask department, see website etc.)?
  • Health1212
    Health1212 Community member Posts: 3 Listener
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    Hi .. Can I express my many many thanks, I now have much I can work with , so many thanks again 
  • chiarieds
    chiarieds Community member Posts: 16,127 Disability Gamechanger
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    Hi @Health1212 - & welcome to the community. I hope I may add my comments to those above as a long-retired physiotherapist, & someone who also suffers from osteoarthrosis (OA).
    I politely disagree with what @Spoonbill has said, tho I'm sure they were trying to be helpful. You can be assured that if you are seeing a physiotherapist within the NHS they will indeed be qualified (so can see no reason to argue further). I also think I would have felt somewhat affronted if, in that setting, someone had asked for proof of my qualification.
    What unfortunately seems to have happened, is that your physio isn't communicating at all well. In my humble opinion he should ensure that you understand, explaining in non-medical language. Even as a student, many patients thanked me for explaining things that they said Drs didn't take the time to do. Good communication should be part of any treatment plan, otherwise trust may be lost between a physio & their patient.
    First of all, your pain is indeed real, OA causes wear & tear of the joints, which results in pain, as I know only too well. Chronic pain is defined as that which lasts longer than 3 months, so you will undoubtedly have chronic pain too. Now when something's wrong, such as with OA, signals go from our bodies to the brain where it's processed, then different nerves from the brain come back to your body, where pain is then perceived. Chronic pain can amplify our brain's way of sending pain messages, so we can feel even more pain.
    There are ways to help us feel this longer lasting chronic pain less. With OA, one of the main things is exercise; believe me when I say I now practise the exercises I used to teach! In addition there are other ways to help us feel pain that bit less......personally I also use a breathing exercise, distraction & mindfulness. As we're all different, some people find some things work better than others, so it can be a bit of trial & error. It does seem to be that often a combination of things work best.
    I 'think' some of this is what your physio has failed to explain, & hope I may have managed.

  • Spoonbill
    Spoonbill Community member Posts: 70 Courageous
    edited January 2022
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    Thanks to @chiarieds for highlighting possible confusion from my comment above, and I'm glad that a professional is able to suggest what the therapist in question may have been attempting to put across, alongside their practical suggestions.
    You might argue that I'm too cynical, but - while one might hope that it were the case - before assuming that the "therapist" in question is in fact a physiotherapist, I would personally start by confirming that, again along with determining what it was they have actually written (@Tori_Scope has suggested how to do the second part).
    Also to clarify that I wasn't suggesting that the therapist be challenged to their face, merely that their qualifications be confirmed by reasonable means - I see no reason that a well-managed service shouldn't be happy to state the qualifications of their staff - they are, after all, being paid by the public to provide a service and are answerable to the same.
    It could be as simple as @chiarieds offers, and that indeed may offer a way forward - but then again, ahead of gathering the facts I think anyone not directly involved should accept a possibility that it also may not be that simple.
    Let me try to re-balance by saying to @Help1212 that if what @charieds says rings true for them and offers a way forward, that is obviously all well and good. Whatever the outcome, good luck in getting appropriate support!
  • chiarieds
    chiarieds Community member Posts: 16,127 Disability Gamechanger
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    The scenario that a physiotherapist working within the NHS is not in fact a Chartered Physiotherapist is so unlikely that I'm unsure why this has been highlighted. I'm also unsure how this viewpoint is helpful to @Help1212 however I'm sure they can reassure themselves that he will indeed be qualified when next in the hospital should they wish.
  • Spoonbill
    Spoonbill Community member Posts: 70 Courageous
    edited January 2022
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    Hi @chiarieds, there seems to still be a misunderstanding here.
    1. As people not directly involved, neither of us have all of the facts.
    2. The fact that the account suggests a possibility of the therapist in question making a psychological assessment brings into question in what capacity they are operating. Their registration status is largely irrelevant - the question I raised was to whether they are operating within their qualifications.
    3. Health1212 writing "started physio once a month on the NSH but the therapist has decided" is not enough to know for a fact that the "the therapist" writing the notes is a physiotherapist, a psychotherapist, or any other kind of therapist.
    4. All this can be confirmed through fact-finding, which is all that I have advocated. No assumptions, no accusations, just getting the facts straight.
    5. For avoidance of doubt, I have no qualm with the school of physiotherapy!
  • chiarieds
    chiarieds Community member Posts: 16,127 Disability Gamechanger
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    I fear you are making a mountain out of a molehill @Spoonsbill
    1. I agree, yet I would think I know more about physiotherapy than yourself.
    2. Only you have mentioned a 'psychological assessment.' As someone who has maintained an interest in neurology, I read many diverse medical papers. I would be surprised if physiotherapists currently in practice did not also do so, & will certainly keep up to date with current guidelines, such as from NICE.
    Pain is a complex subject, & we are learning more all the time how the brain processes it. Pain can be influenced by psychological factors; stress, or low mood, for example making pain feel worse. Exercise makes us feel better, as may distraction, meditation, etc., so these can make our perception of pain less noticeable. As physiotherapists will have many patients with chronic pain, they will therefore need to understand its complexities.
    3. I think mentioning physio then saying therapist is self explanatory; physio+therapist.
    4. Or possibly this has caused confusion.
    5. Good, at last we agree.
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