Disabled people
If this is your first visit, check out the community guide. You will have to Join us or Sign in before you can post.

I-watch scheme

littleruthie123littleruthie123 Member Posts: 490 Pioneering
edited June 2018 in Disabled people
Just had a letter about this .anyone else. Feel like I'm being beaten for every corner now 

Replies

  • wilkowilko Member Posts: 2,284 Disability Gamechanger
    Hi , littleruthie123, haven't a clue what you are on about please explain to us all so we can join in.
  • littleruthie123littleruthie123 Member Posts: 490 Pioneering
    Ok .I received a letter from my surgery .inviting me too take part in a study programed for patients with chronic pain on a high amount of opiates .which would mean going on a support programme  .involving coping with pain ,relaxation technics ,coming of the opiates basically  and going on a pain management course which I all ready have been on last year  it's very long but hope you get the general feeling of it 
  • GeoarkGeoark Member, Scope Volunteer Posts: 1,370 Disability Gamechanger
    Hi @littleruthie123 as it is a study you have a choice and can choose to decline.


    As an individual I stood alone.
    As a member of a group I did things.
    As part of a community I helped to create change!

  • littleruthie123littleruthie123 Member Posts: 490 Pioneering
    HI it does say it's patients choice at the moment 
  • GeoarkGeoark Member, Scope Volunteer Posts: 1,370 Disability Gamechanger
    Doctors can encourage patients to take part in studies but generally cannot force them into it.

    While there have been a number of studies on pain management there have been hardly any on the effects for those with chronic pain, so the picture on how effective these type of courses are for this group are not known. 

    May I ask, does the letter mention coming off the opiates or is this your assumption? As I said in the other thread, I do not believe these reduce your pain levels, but rather help in coping with it. 

    If you are not interested simply don't consent to sign up for it. If on the other hand you have concerns about what would be involved, including having to come off or reduce your medication then ask the questions and then decide. 

    The other thing which came up in the other thread was that some courses are well run and can be helpful while others are not.

    There is no right or wrong decision on this, simply your choice.

    As an individual I stood alone.
    As a member of a group I did things.
    As part of a community I helped to create change!

  • littleruthie123littleruthie123 Member Posts: 490 Pioneering
    Hi yes I agree would be a mixed bag .yes in the letter ;more like a booklet it says you get put in one of two groups support group at home. Then the other working with the doctor reducing opiates.it stared some previous patients who have successfully come of opiates would do talks 
  • GeoarkGeoark Member, Scope Volunteer Posts: 1,370 Disability Gamechanger
    That was pretty much what I thought would happen. For a study to work you would need two groups to compare results, or a huge cohort. Who goes into what group is usually chosen randomly.

    A lot would depend on how you feel about potentially having your medication reduced, and with chronic pain I would fully understand your concerns if you were. If it was me I would want some reassurance about what would happen if the medication was reduced and I could not cope.

    It is a bit of an assumption on my part based on what you have said, but I get the impression you do not wish to take part. As I have said this is your choice, and you should not feel pressured into doing it. If you feel there may be some potential in improving your quality of life but not sure, speak to your doctor and ask the questions that are concerning you. I would not make a decision there and then but let them know you will think it over and get back to them.

    As an individual I stood alone.
    As a member of a group I did things.
    As part of a community I helped to create change!

  • littleruthie123littleruthie123 Member Posts: 490 Pioneering
    Yes it's a tough one for me personally.i would want too be weaned of correctly ,if it effected my life in a positive way then I would be tempted..but I would worry also if it Made things worse .that would be very hard too cope with 
  • [Deleted User][Deleted User] Posts: 1,756 Listener
    The user and all related content has been deleted.
  • GeoarkGeoark Member, Scope Volunteer Posts: 1,370 Disability Gamechanger
    Victoriad is correct, once you have given your consent it should be possible to come off the study. They would also have a duty of care towards you.

    Not wanting to scare you off, but you have mentioned it is for those with chronic pain and high dosage of opiates. By their nature they can be addictive and this can cause issues while either being weaned off or in reducing the amounts you take. You need to be informed realistically what these can be and what support you will get to deal with them, if you are selected for that group.

    The information you have been sent should tell you who is running the study and who has overall supervision.  You can contact them directly with your questions, or speak to your doctor. Your doctor should be made aware if you take part in the study.


    As an individual I stood alone.
    As a member of a group I did things.
    As part of a community I helped to create change!

  • WaylayWaylay Member Posts: 922 Pioneering
    @Geoark Opiates may not work on chronic pain for some people, but they certainly do on mine!
  • littleruthie123littleruthie123 Member Posts: 490 Pioneering
    Yrs I agree .they defienewly help with mine .without them on can't move
  • YadnadYadnad Posts: 2,856 Member
    Ok .I received a letter from my surgery .inviting me too take part in a study programed for patients with chronic pain on a high amount of opiates .which would mean going on a support programme  .involving coping with pain ,relaxation technics ,coming of the opiates basically  and going on a pain management course which I all ready have been on last year  it's very long but hope you get the general feeling of it 
    This has been subject to a thread that I started a while back after I was told to go on a course for those very same reasons. The gist of it is that pain does not exist in reality - it is simply in your head that you think you have pain.

    I didn't go to be honest - to me it's a load of mumbo jumbo - of course pain exists that is unless you believe that listening to whale music can make it all go away.
    It's a plan set out by the NHS to reduce the high volume of drugs being prescribed.

Sign in or join us to comment.