New doctor with no medical records

As5567

Over the last year I have been fighting trying to not be moved to a more local hospital, I lost the battle on the grounds that I would get the same level of care elsewhere.

Well firstly I don't like the new doctor one single bit, she does not listen and made me feel like I was some kind of fraud. She did some joint movement tests and told me that I have no Arthritis in my Hips, Knees or feet..... to make matters worse she did not have my medical records from the other hospital and she never will.

She told me that she doesn't know much about my AS but not to worry because "they're all the same" which is true in a way and in another way its far from the truth.

As it currently stands I have no form of medication set up, I decided to come off my other medication due to side effects and a reaction during the last infusion. I asked about my medication and was told that I would have an appointment in the next few weeks to see a nurse about my options...... I have nothing against nurses and they often do a better job than the doctors at looking after us, but how are they possibly going to know what medication to recommend for me next, not to mention I have tried every single biologic that is approved under the NICE guidelines.

Another thing that has really annoyed me, I have to travel between 3 hospital for appointments. The one hospital is 48 miles away from my home, so much for a much more local and convenient service eh?

I have wrote another letter to the hospital and will see if that gets me anywhere, I very much doubt it.

stickywicket

I'm sorry. I think this is what you feared with knobs on, isn't it? I hope the nurse consultation will prove more useful than it sounds. Perhaps our Helplines could advise.

dibdab

That sounds awful. I really hope you get a response soon. Just a thought but I wonder whether the Patients Liaison dept of your new hospital might help- is there a different consultant you could see? I found them really helpful when I was unhappy with my rheumy- they helped me get transferred to a new one who is lovely, patient and has made lots of difference to my treatment.

Deb x

justinbarrow

Do you mean your GP is local but your hospital is not - If this is the case, I think but don't hold me to this but im sure you are entitled as an "NHS Customer" to be treated at any hospital of your choice in the UK but GP`s are district only as far as I know.

As5567

justinbarrow wrote:

Do you mean your GP is local but your hospital is not - If this is the case, I think but don't hold me to this but im sure you are entitled as an "NHS Customer" to be treated at any hospital of your choice in the UK but GP`s are district only as far as I know.

Sadly the choice of hospital is only available in England, it wasn't a problem here until recently....and I suspect that its just another way to make the NHS figures look better on paper than they really are. Why else would they force people to access the closest hospital to their home.

As5567

dibdab wrote:

That sounds awful. I really hope you get a response soon. Just a thought but I wonder whether the Patients Liaison dept of your new hospital might help- is there a different consultant you could see? I found them really helpful when I was unhappy with my rheumy- they helped me get transferred to a new one who is lovely, patient and has made lots of difference to my treatment.

Deb x

I will give them a phone call tomorrow, the problem is that only one consultant holds a clinic at my local hospital, to see another consultant would mean having to travel 48 miles to another hospital. I think that these people in government need to look up the meaning of the word local because 48 miles is far from it. The old hospital I used to visit is around 18 miles away from my home and has all of the facilities I need on 1 site.

As5567

stickywicket wrote:

I'm sorry. I think this is what you feared with knobs on, isn't it? I hope the nurse consultation will prove more useful than it sounds. Perhaps our Helplines could advise.

Well I have found out what the nurse consultation consists of, a discussion of medication which will be passed back to my doctor. Not much use really when I have tried every single drug he/she will have in mind. I do know the name of the drug that my old doctor recommended I try next, but again like with the infliximab it will need to have special funding because it is not recommended by NICE to treat my condition, and for a hospital that is trying to save 170million over the next 5 years I have a feeling they will most likely decline such a request.

I'm also not sure how willing my new doctor would be to even prescribe a drug outside of the NICE guidelines, I know that they need to justify their decision and can be held liable for things going wrong.

We will see what happens when I eventually get this appointment, I suspect it will be a while before I get any new type of medication, and maybe it will be for the best for the new doctor to see me when my condition is really bad.

justinbarrow

As5567 wrote:

Sadly the choice of hospital is only available in England, it wasn't a problem here until recently....and I suspect that its just another way to make the NHS figures look better on paper than they really are. Why else would they force people to access the closest hospital to their home.

Where are you based, scotland, wales ? never knew it was only in England but agree with what you are saying, why should you be forced to used the closest hospital.

justinbarrow

I know someone in a similar situation their treatment is quite expensive and if they had to change hospital that is out of the district area of the other the fear is that the new hospital might not have the finances or budget to cover the cost of such an expensive treatment (post code lottery) then try a cheaper alternative that wont have the same benefits.

Its terrible when you think of it, Hope you get something sorted.

As5567

I live in Wales, where the NHS is run by the Welsh Government. Very badly run if I say so myself.

Even in my situation where the old hospital have a dedicated team for AS (Different from typical arthritis clinic) Its still not a "clinical" reason to allow me to stay there. There has also been many other cases I have found on line where people have been refused treatment at a much better funded and equip hospital for conditions such as MS.

justinbarrow wrote:

I know someone in a similar situation their treatment is quite expensive and if they had to change hospital that is out of the district area of the other the fear is that the new hospital might not have the finances or budget to cover the cost of such an expensive treatment (post code lottery) then try a cheaper alternative that wont have the same benefits.

This is what I fear currently, and the fact that they have no medical notes and very basic medical history......how on earth am I meant to have trust in them that what ever medication they decide to give me is for the best? I have already told the new doctor that there is no way I'm going backwards to try drugs that have failed in the passed. Been there done that got the badge, I think I would rather just suffer in pain than go through all of the nasty side effects again. One or two of the drugs even came with a free trip to hospital for 7 nights stay.

As5567

Oh and just something else to add that I though was rather shocking.

I asked about what will happen with my upcoming dexa scan to check my bones, apparently I'm far too young to have bone problems and that its something I no longer need?

I'm no doctor but im more than sure that 8 or so years of steroid use on and off (at one point 2-3 years constant use) The fact that I also have AS also puts me at very high risk of Osteoporosis in my spine. My old dexa scan done last summer shown an improvement in my hips but a deterioration in my spine along with some new fused parts. But the new doctor would know this is they actually made an effort to get my notes, I just have a feeling that something is going to be missed and cause things to go wrong.