Help and advice

colinone
colinone Member Posts: 1,039
edited 5. Apr 2010, 14:00 in Living with Arthritis archive
Do you think you get enough help support and advice regarding your disease from medical sauces. Have you had more help and infomation from websites like this and the internet.
Why do you think you may not get the same sort of support from NHS as you do from a website like this.
Thank You
Colin

Comments

  • kathbee
    kathbee Member Posts: 934
    edited 30. Nov -1, 00:00
    Hi Colin

    No I def dont get enough help from the
    hospital clinic I have been attending for the
    last 10 years for RA, although my GP is always helpful
    and will do whatever he can. I also have OA amongst
    other things.

    This website has been invaluable for all its info
    and helpful friendly people .

    Kath

    Oops I keep missing bits out :roll:

    The clinic staff just do not have the time and with
    some the inclination. When I told my rheumy that
    I was waiting for a hip replacement (as I had seen
    an ortho surgeon) she told me
    'well thats nothing to do with me'

    Perhaps she doesnt know that RA causes damage.
    And thats a consultant rheumatologist for you. :roll:
  • livinglegend
    livinglegend Member Posts: 1,425
    edited 30. Nov -1, 00:00
    Websites should be used as an addition to medical sources, not as a replacement. You need specialist information from Rheumys who have the knowledge to take and interpret blood tests and prescribe the correct medicine for your condition which websites obviously cannot do.

    Doctors simply don't have the time to be available for a single consultation of many hours to discuss every twist and turn of your condition on a permanent basis. They have other patients to see and take care of.

    Websites are often available 24 hours a day, every day, for as long as you wish to access them and are usually free. They are a widespread source of information that you can use to improve your knowledge of your condition and how it could be helped for you. Many people at a time can access a single site without knowing who else is also on there.

    So, the main source of diagnosis, testing and medicine is your doctor and other medical specialists. Help and support on a more general basis from websites such as this or similar. The information should work together, but neither replaces the other.

    Note: Anyone can post anything on some websites, whether it be true, false or really dangerous. The information could be many years out of date and could be really detrimental to your condition. (NOT this site, I might add).

    Joseph 8)
    Josephm0310.gif
  • pluggathome
    pluggathome Member Posts: 171
    edited 30. Nov -1, 00:00
    I think I'm one of the lucky ones.

    I have two doctors who are worth their weight in gold and do the best they can for me. Sometimes have a bit of trouble getting past the receptionists to get to them though :lol: they sometimes have lion like tendancies.

    I have also been really lucky with my rheumy and the rheumy nurses. On my last visit I did not get my normal rheumy and raised concerns about consistency, they said not to worry, they had all my information at their fingertips, then started talking about old doses and not reading off the most up to date notes :x .Overall though, in two years this is the only blip.

    I see my docs and rheumy as being their for the medical side but find that this forum is THE BEST PLACE for emotional support and practical guidance.

    I don't post a lot but do read it a lot. This forum has been my lifeline when the wheels fall off. Thanks guys.
    :D:D
    Plugg
  • frogmorton
    frogmorton Member Posts: 29,884
    edited 30. Nov -1, 00:00
    Hi Colin :D

    GOOD to see you :D I hope you have a wonderful Easter and that you are keeping well :)

    I think I have found out a lot more on a place like this really. I just seem to confirm stuff at the rheumy's.

    He gives me leaflets sometimes, but the information on the A/C site is very very good. I guess they have the time to prepare it and get it right.

    I am not the sort to self-diagnose - I know that some people can worry themselves to death by going on sites which are less good than this one.

    You take care

    Love

    Toni xx
  • elnafinn
    elnafinn Member Posts: 7,412
    edited 30. Nov -1, 00:00
    Hi Colin

    First of all it is good to see you posting on a couple of zones today :D

    For me, with the combination of the internet and the medics I do not have any strong complaints about the medical care I receive.

    I would never only rely on one of the sources, to me, that would be foolish. It is helpful, I have found, to go armed with some knowledge and questions I may wish to ask, after learning information on the net. I believe the time with the medic can be used more efficiently. I wish to work with them as a team and would not continue treatment with a person I felt uncomfortable with, for whatever reason.

    Forums are great to be able to ask questions, obtain support and personal experiences, that can be stored away to be discussed with medics at appointments.

    The NHS is overworked, appointments are too short, these medics do not stay in the same job, they complain of too much paperwork, which is more than likely true, there is hardly any liaison between medics in different departments. Such a waste of time. Many of them are unhappy in their job so how can they work well with patients. Often there is a lack of continuity of seeing the same person from one appointment to the next.

    Luv
    Elna x
    The happiest people don't have the best of everything. They just make the best of everything.

    If you can lay down at night knowing in your heart that you made someone's day just a little bit better, you know you had a good day.
  • valval
    valval Member Posts: 14,911
    edited 30. Nov -1, 00:00
    well we live with it they do not and you just can not fully understand unless you have been through it. they might understand the mechanics of it but not the mental strain it puts on us the not knowing from one day to the next what we will be like.
    the stiffness and pain that makes you feel like an 80 year old i read on here some where, i sit down like a 48 year old and get up like a 84 year old that is it for so many of us not just a bit of stiffness but locked up solid not good. how can some one understand that from reading books ect
    val
  • elnafinn
    elnafinn Member Posts: 7,412
    edited 30. Nov -1, 00:00
    My knee consultant has definitely listened and learned from his patients and stored the information well. Without a doubt he knows and understands what it is like, although he does not suffer with arthritis himself.

    The physio I have seen at various times for different problems, is extremely knowledgeable and remembers/reads my past notes even if there is a goodly time lapse - sometimes a couple of years. She enjoys her job and "knows her onions", that is obvious.

    Luv
    Elna x
    The happiest people don't have the best of everything. They just make the best of everything.

    If you can lay down at night knowing in your heart that you made someone's day just a little bit better, you know you had a good day.
  • speedalong
    speedalong Member Posts: 3,315
    edited 30. Nov -1, 00:00
    Hi Colin,

    I would say I have had very little advice from the medics. I get x ray results and surgical options from my consultant who always assumes I know everything ie he'll dictate a letter to my GP and say thinks like, I have discussed the risks with Miss M etc ... and he hasn't .. so I have to say and what are they? He is not keen to give much info.

    My GP is always kindly and will prescribe meds & make referrals, but that's about it.

    My current physio is pleasant and interested and knows and shares her knowledge about how to stretch & strengthen muscles. She also knows about post op.

    This forum and website has been great making me realise I'm not alone in my challenges and a wealth of knowledge about issues at work. It has also made me feel more positive about my immiment op which I was dreading. Between the medics - they barely mention the words OA let alone impart knowledge about it. This means you have to surf the internet etc to find out more.

    Speedalong
    I have had OA since mid twenties. It affects my hips and knees. I had a THR on the left aged 30 and now have a resurface-replacement on the right - done May 2010.
  • abfab1963
    abfab1963 Member Posts: 41
    edited 30. Nov -1, 00:00
    I cant say I have had any issues with Rheumy....yet!

    I do tend to take an active interest in my health (Since 2008) and do quite a bit of research online. This isnt for everyone but I feel that it empowers me, helps me understand what my rheumy says and enables me to ask more questions.

    However, I was quite shocked to hear that Arthritis Care in NI doesnt normally provide any courses outside of working hours. Am I not supposed to work now I have PA?

    In MY opinion, websites like these are always the best for info and support as we are all living it together and are able to advise or help eachother.

    Abfab
    x
  • dorcas
    dorcas Member Posts: 3,516
    edited 30. Nov -1, 00:00
    Hi Colin,

    I've no complaints about the quality of care or support from rheummy or my doc but I think the 'success' in any consultation does depend on how well prepared I am for the appointments. Time with doc or rheummy is a scarce commodity so I try to use it wisely!

    If I've taken time beforehand to think through how I've been and any questions I have so that I can give rheummy a clear picture, then that definitely helps in getting the correct advice/ treatment/ outcome.

    The internet is helpful too and I do use some of them to research/ fill any gaps but you do have to be very careful and I only visit 'reputable' sites.

    The forum meets different 'needs'; the helpline has played an important role for me in providing sound advice and one to one support. The discussion forums provide me with support, information and reassurance. Sharing thoughts, worries, hopes and emotions with peeps who connect with me at a very deep level of understanding and acceptance is quite simply priceless...and the opportunity through chit chat to forget about arther and everything else for awhile and just have a laugh is great!

    What about you Colin? what do you think?

    Irisx
  • suncatcher
    suncatcher Member Posts: 2,174
    edited 30. Nov -1, 00:00
    I like to get my info from all sorces. The hospital is good but this site is better. I like hearing true life stories from people who have it not medical people who know but not have experianced it themselves. We can learn from each other and find solutions.
    I also like info leaflets from nras or artheritis care. :D joanne price
    Joanne
  • colinone
    colinone Member Posts: 1,039
    edited 30. Nov -1, 00:00
    Thank you all for your remarks
    Colin
  • sarahw
    sarahw Member Posts: 10
    edited 30. Nov -1, 00:00
    Hi , things have changed alot since i was diagnosed 30 yrs ago. Apart from leaflets in the hospital waiting room etc that was all we had really. I suppose if had spent time with phone calls getting info in the post it would have been ok but when your ill you cannot be bothered. the internet has certainly changed this thank goodness!.