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Suggestion re Link to Latest OA guidlines from NICE

ITLSusanITLSusan Posts: 74
Hi,

I'd like to make a suggestion.

When I was diagnosed with OA my doctor basically told me "you've got OA, do you want pain meds? Come back when you need surgery". This isn't unusual. We're on our own. That's the reality for most. In sheer terror we search the internet to find out more and come across sites like this.

Now, obviously most people who get better through their own actions or through chance get on with their lives. They don't frequent forums like this. So all we get to read are the worse case scenarios. This can send us into a spiral of pain and despair. I can't begin to explain to you how much damage it can do.

People that got a diagnosis a long time ago are often not up to date with regards to the latest info with regards to understanding of what OA is, it's prognosis, treatment and likelihood of complete cure. In good faith they share bad info. The latest guidelines were published in 2014.

Can I suggest a pinned link to the latest NICE guidelines so that people searching for information can go direct to the source to find out what guidelines their doctors are being given? I think people would find it hugely helpful and it would help them to separate fact from fiction.

Comments

  • SloshSlosh Posts: 3,194
    edited 30. Nov -1, 00:00
    Arthritis Care is not the appropriate website, go to Arthritis research.

    You write about these forums " all we get to read are the worst case scenarios"

    I have to disagree.

    People do come on here for advice and often when first diagnosed and feeling scared and depressed, and yes people do come on here when going through a tough time.

    BUT

    There is a wealth of good advice, friendship, humour, support and understanding on here which I for one am very grateful for, and there is also encouragement for the rough times and, there are posts from people for whom various treatments are working. Perhaps there should be more but it is NOT all doom and gloom.

    In one of your posts you write that you were mis-diagnosed hence your recovery. I am confused if this is the case why you are still posting as someone with OA, please forgive me if I have got this confused.

    There have been links published to the guidance you refer to.

    Please don't knock this wonderful resource, perhaps it is not the right forum for you but for most users it is invaluable and I personally am very grateful for it.
    He did not say you will not be storm tossed, you will not be sore distressed, you will not be work weary. He said you will not be overcome.
    Julian of Norwich
  • ITLSusanITLSusan Posts: 74
    edited 30. Nov -1, 00:00
    Arthritis care IS the appropriate website.

    Newly diagnosed people come here looking for advice. It's important that they are given accurate and up-to-date advice.

    NICE guidelines contain the information made available to GP's and other health professionals. It is the guidelines that they work to and is based upon available research and expert opinion. The latest edition in relation to osteoarthritis was published in 2014. You don't get a much better source of information. Especially when people are asking for clarification on their diagnosis.

    It paints a much more positive view of osteoarthritis than is being shared by many long-time sufferers. This is SO important to very many people. I'm not saying long term suffers shouldn't share their experiences - everyone's experience is valuable. But people need to get the objective viewpoint too. And that is provided by NICE.

    It may well have been linked to in the past. You forget not everyone has made thousands of posts and spends hours reading through past posts. I realise that Arthrits Care shares guides but these are dumbed down extracts from NICE for certain types of OA patient. It can be SO helpful for those of us that don't fit the typical pattern found in doctors surgeries and support forums to have the actual information so we can draw their own conclusions. In retrospect I know I'd have been saved a lot of pain and suffering if I'd found NICE guidelines sooner. They paint a very different picture from the typical guides shared by doctors and OA charities.
  • helpline_teamhelpline_team Posts: 2,072
    edited 30. Nov -1, 00:00
    Dear ITL Susan,

    Thanks for your post to Helplines. I'm passing on your suggestion to the people in charge of our website.

    As I'm sure you are aware the key recommendations of the NICE guidelines are mirrored by all our publications and self management courses.

    all the best

    Guy

    Helplines
  • ITLSusanITLSusan Posts: 74
    edited 30. Nov -1, 00:00
    Thank you for that!

    The huge value in getting to see the NICE guidelines for yourself is that you can see the reasoning behind the advice given in various guides handed out by charities, doctors etc. You can also find out what the doctors SHOULD be doing for you. That's what a lot of newly diagnosed people go to forums to ask about. They aren't getting enough info from guides.

    An example. I paid £160 back in 2006 to see a specialist in relation to my hip problem. I thought I'd get a better informed opinion of what was wrong by seeing a specialist. Had I seen the NICE guidelines back then I'd have realised that the specialist would do EXACTLY what my GP had already done for nothing. I wasted my money. And STILL got a misdiagnosis (or incorrect prognosis). The NICE guidelines would also have protected me from the scare stories that I was given when first diagnosed. I've heard some crazy ridiculous stuff from health pros (and seasoned OA sufferers) that the NICE guidelines most definitely do NOT support. When you're first diagnosed you don't have the knowledge or experience to separate good info from BS.

    Guides are terribly inappropriate for some people. They are targeted at a certain type of OA sufferer. Perhaps the type that doctors see most in their surgeries? They make sweeping generalizations that don't always hold true. Those generalizations often become fiercely defended 'truths' to the detriment of many people diagnosed with OA.

    Some people are fit and have aspirations way beyond what those guides suggest. They prefer to seek out complete cure rather than accept pain relief and drugs. They want more information about what is best. They want to pull out all the stops to get a good resolution and claim their lives back.

    Your guides only provide basic info. When you have the option to look up the NICE guidelines for yourself you get to see the actual research that recommendations are based upon. And in many cases you see it's wholly irrelevant to your case.

    For example, the NICE guidelines point out that there are huge gaps in research and that most research that is available is carried out on knee OA patients. It also points out that hip OA is very different from Knee OA.

    So whilst the powers that be might decide that in the absence of definitive information they'll guess at a certain piece of advice an individual might prefer NOT to be swayed by that guesswork. Their first hand experience might fly in the face of what the guides say. When they look at the NICE guidelines behind those guides they can see that the research actually points to something very different in cases like theirs.

    Trust me - the NICE guidelines are HUGELY helpful to OA sufferers that want to take control of their own destiny. I can't stress that enough. Not everyone wants things dumbed down.
  • JenJen Posts: 155
    edited 30. Nov -1, 00:00
    I usually check out NICE guidelines for a few different health conditions.

    I don't rely on one source of information, I suspect many others check things out from different recognised sources of information as well.

    NHS, NICE, BMA, there's loads more credible sources out there.
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