Do you feel you are sufficiently involved in the decision-making about your condition and your health in general?

I'm going to tag our Ambassadors here ;)

@lesmal @robjmckinney @richard0804 @mikebpool @sophiesmum

@Courtney_J ... Thank you for bringing this subject up.

I have had epilepsy for 48 years now and am now currently reliant on the NHS, for which I am extremely grateful! They have treated me well, both in hospital and on an appointment basis. I am also lucky to have a caring doctor, who listens to his patients and discusses one's health issues with them.

In the 4 years of living in Northern Ireland, I have had the opportunity to participate in most of the decisions concerning my health problems, i.e. symptoms, medications, and more. As far as Neurology is concerned, I have been given the appropriate MRI & EEG testing, but medications have been suggested and decided for me on a trial and error basis. Only now, after ending up in hospital in March with hyponatremia, do I feel that I am being listened to regarding medication and side effects, which have all taken a toll on my body. I have had to be more determined to not let my thoughts and suggestions be over-ruled when my health is at risk. Unfortunately, teleconsultations with the neurologist every 6 months (when doing a review) do not help the issue, as I feel that one should be able to discuss neurological conditions face to face.

Ever since the diagnosis of AS I have taken an active part in deciding which drug/s suit my over all condition. I have many other conditions that on their own cause me great hardship getting drugs to suit not just me but all of the other drugs that I take in a day (42).

You need to insist that they make sure that they have explained everything to you so that you understand what and why certain pathways are taken in your treatment.

Good Luck, STAY SAFE Richard.

Thanks for giving us Amazing info.

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Hi, I find that some docs do not give enough details about treatment, procedures, etc. Sometimes I feel as if they are in a great hurry and don't have much time for talking to their patients. They just want me to leave soon and make way for the next patient, and so on and so forth. I'm quite shy, so I don't insist on being given more info, but I probably should, as there are things I don't fully understand.

When I was diagnosed, I was certainly not expecting anything like that, and di'nt know anything at all about MS. So I just followed my doctors blindly, let them make all the decisions for me. And I don't regret it. I consider myself lucky to have always been surrounded by wonderful doctors and nurses, who are always attentive to me and to my needs, always kind and caring, and genuinely willing to make my life easier for me. They do explain everything perfectly and I never had any problems with them.

@dpoc02 Hi, I feel the same as you. I'm not overly shy but I get embarrassed/shy when it comes to my health and explaining. I had to change GPS because we moved from a house in to a bungalow, in Dec 2019. Then covid happened and I didn't get to see my new GP until this year. They don't know me, they don't know my history and all appointments are by phone. You can only talk to them about 1 problem, it's frustrating. I have many things going on and I need the knowledge of a doctor, for right treatment and medications. Xx

Hi @Kimberley68 , do you mean that if you currently have two or more problems you cannot talk about all of them during one appointment with your GP? Each problem must be treated on a separate visit?

@Courtney_J & @Kimberley68 ... I think it depends on the doctor, and whether they have time to discuss one or more health issues.

During covid, we were restricted to a phone call to our GP, receiving a callback and if urgent a 20-minute face-to-face visit was granted, but only to discuss one subject at that time.

Now that things appear to have eased, the procedure is the same regarding a phone call to the GP, a call back from the doctor, and I know that if the face-to-face appointment is made, my GP has discussed more than one issue with me longer than 20 minutes.

@Courtney_J Hi Courtney. Yes I can only discuss 1 problem. It's frustrating because I have a few things going on. They make me feel like I am wasting their time. Also, whilst talking they are constantly typing and I have to wait until they finish typing to carry on talking. We also live in an area with poor mobile coverage and if the GP rings and nobody answers the call in so many rings, they don't call you back. I have been sat with my mobile near me, answered the call and nothing, it's frustrating. We don't have a landline anymore.

I'm really fed up because I have pain , daily. I am 53 and I feel like 83. I feel all alone and it's affecting my quality of life. I used to enjoy going for a walk with my earphones in, listening to music from my youth. I was in a happy place and it makes me feel closer to my dad. I haven’t been able to walk for about 2 months now. I have a burning pain on my midfoot area, in my right foot and it affects me daily. I don't have the pain as bad when there is no weight on it ,like when I rest. They did an xray and it shows osteoarthritis in my right midfoot and toes.

On a daily basis I am in pain but now I have this foot pain and also intermittent shooting pain, in my right elbow. They also xrayed this but all is clear. GP said I needed to have this done to make it possible to see an orthopaedic doc. GP said that they don't have anyone at their surgery who can give a steroid injection snd I therefore need to wait for an orthopaedic appointment. I still don't have an appointment and I am in so much pain. GP gave me Naproxen for 2 weeks but didn't ease the pain in foot or elbow. Tried diclofenac and capsicum cream, no joy. She won't prescribe Tramadol because under the rheumatologist, I was on it for about 10 yrs. I have not taken Tramadol for 2 yrs now but use CBD oil from my chemist and paracetamol. The foot and elbow pain is still painful.

I made an appointment to speak with the diabetic nurse. I read online that my foot pain could be neuropathy and asked the nurse. She said it sounds like neuropathy but you usually get it in both feet. She has referred me to podiatry to find out.

I feel so alone with all of this and it's affecting my quality of life. I already deal with after effects of chemo, removal of my lattismus dorsi muscle, severe arthritis in my lumbar spine, herniated discs, type 2 diabetes, underactive thyroid, fibromyalgia, after effects of Covid, a new partial left knee replacement and now pain in my foot and elbow.

HELP! How can I get to feel half the pain?

Sorry for this long post but I don't feel supported by my GP surgery. Also, I have only been a patient since Dec 2019 and then Covid came in March 2020. They don't know my history and they never give me time to explain all my health issues.