The A Word - Supporting People with Arachnoiditis

Time 2020-09-29 11:03:47

Web Name: The A Word - Supporting People with Arachnoiditis

WebSite: http://www.theaword.org

ID:63895

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This web site aims to raise awareness of arachnoiditis by contact with other health professionals in various specialties, improve recognition of the condition, find better ways of managing it and reduce the number of avoidable new cases. We aim to inform people with the condition in the hope of improving their understanding and thus help them manage their lives with arachnoiditis. I do not give individualised medical advice, and I do not promote any specific treatment.DocSarah has written an update on Epidural Steroid Injections. This is in Treatments and the direct link is HERE We were expired.....!! Actually is was a password problem. Full explanation on the Forum. Also, DocSarah has more linksDocSarah has posted on the Forum about proposed changes in DLA in the UK Go to1. Choose and Book?Having been through the 'Choose and Book' system a few times now, I am struck by how much this is a mis-named idea. Granted, it seems nice of the NHS to give us some say in who we go to see about our health problems, and there is an element of helpfulness in this in that we can choose not to travel too far. But on the other hand, is it really a proper choice of the doctor we see, because how do we really know who is going to be the best person? How do we know whether they are competent to see us ( have good results in surgery for example, or a special area of expertise) or (and this might be more important for us folks with chronic illness) whether they will be compassionate, and actually listen ,and better still, think about what is going on, and act accordingly, in our best interests .As a doctor myself, you would think I would be 'in the know', but then that only really applies to colleagues I have worked with or come across through referrals to other specialties.In 2009, the Tories announced (http://www.telegraph.co.uk/news/politics/conservative/6259501/Patients-to-be-able-to-pick-surgeon-from-league-table-under-Tory-plans.html ) that there  would be league tables of surgical results in the UK, but recently, cardiac surgeons have been saying that these performance indicators are causing seriously ill heart patients to be denied operations, as surgeons are less likely to want to operate on someone who has a greater risk of dying. So this type of information is a two-edged sword it seems.How else can we find out? I guess if you have a good GP, then you trust that they will make the referral you need. You can also go by word of mouth. I'm afraid we don't have a list of doctors in the UK or anywhere else, who are knowledgeable and helpful for arachnoiditis patients, (nor do we have a list of doctors unsympathetic to our cause or who have been involved with medical procedures that have caused arachnoiditis as it would rely heavily on word of mouth, which might be highly biased so potentially misleading).There is however a list of the top 10 spinal surgeons, as voted by their peers, published earlier this year in the Daily Mail. (http://www.dailymail.co.uk/health/article-1368667/Spinal-operations-high-risk--trust-We-asked-experts-themselves.html)If, like me, you are lucky enough to have the possible opportunity to see one of the top doctors but are being steered towards someone else, it pays to stick your neck out, phone the relevant hospital and simply ask to see the person you want to see. In my case, this has got me an appointment with the guy I want to see, although I do have a longer wait, which I think will be well worth it. For now, it is best to try to find out about any doctor you are going to see, but sometimes, you just have to make a blind choice and if it doesn't work out, don't forget, you can always ask for a second opinion.This is the first in a series of questionnaires from DocSarah. For an introduction please  Read more.The results of this survey are due shortly and DocSarah still wants as many completed as possibleAnd here is the second questionnaire so please Read this first.

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