NHS Bureaucracy

Maturecheese

Not sure if this is the place to post this but this is just a little story that underlines the maddening way the NHS works.

I saw my Rheumatologist on Fri 11th and as my inflammitory readings have been high he wanted to check my CRP levels. I subsequently had a blood test the same day. On the following Monday I was at the Hospital as my daughter had a routine clinic appointment so I popped in to the Rheumey dept and asked for my results. We don't have them I was told you need to ask the Dr's secretary so I asked for her number. Sorry they said, no point having her number as she can't give the results to you over the phone, data protection. I then phoned my surgery as they do give results out on the phone and was told that as the test was done in the hospital they didn't have the results. I found the number of my Rheumatologists secretary and phoned her. I told her I was outside the Hospital phoning her and could I have my inflammation marker blood result. Sorry unable to give it out on the phone but your surgery will have the results as it's been on the system since Fri 11th. I ring the surgery again only eventually to be told I can't be given them as the Rheumatologist authorised the test and not my GP. So basically I cannot have my own test results until a fortnight today when my next routine bloods are (now monthly) and even then I might not get it as it wasn't a routine test. In that case I'll wait another two months til I see the Rheumatologist again.

Bonkers or what?

Maturecheese

Update The reg phoned me three times on my mobile and once on the house phone but I was in the garden tying my beansticks together so missed it. Letter on it's way.

Airwave!

Alls fair in love, war and the NHS eh! Bureaucracy (can't spell today) gone mad or jobsworth? Or just a Friday thing? Whatever!

dreamdaisy

The NHS is creaking under the strain no matter where you live. What seems so obvious and easy to us is not when you are dealing with the admin generated by thousands and thousands of poorly people. My GPs surgery used to show how many patients were on their register: they stopped showing when it topped 25,000. DD

Maturecheese

Well letter arrived today and CRP is at 162, still high. The Rheumey is going to add sulphasalazine to the meth if the next test is high. I seem to have consistently inflammatory levels. If it wasn't for the steroids I'd be in a right old mess.

dreamdaisy

The high CRP shows that things are not under control so yes, it may well be that a double or triple therapy will be needed. I was on a double or triple therapy for years, sulph, meth and a variety of anti-TNFs were the norm. Those who can get away with meth alone are probably greater in number than we know about so don't need a forum like this because they assume it's as easy for everyone else. :roll: Someone on say hello is doing well on meth alone so we don't hear from them. DD

Maturecheese

Great Daisy I'm not looking forward to even more chemicals being ingested as I am getting enough side effects with meth for my liking. The Rheumey did mention that my liver will take even more of a pounding with with this sulfy stuff but I guess I haven't got much choice.
I jokingly said to my sister the other day, if they haven't sorted my dose out in another year I'll just take steroids and alcohol. If I'm going to wreck my liver I might as well enjoy it

trepolpen

dont know why you think its strange , they dont want you to know anything , as for bloods I am suprised they let your GP know !!!!

as for sulphasalazine , wonderful drug , I been on it since 1996 , we take a very low dose compared to what they take with other illness like crohn's disease but fell it will do little to help your high CRP & they should be trying to give you answers to what is going on

Maturecheese

trepolpen, are you only on sulphasalazine or methotrexate as well? Apparently methotrexate and sulphasalasine, being DMARDS control the disease and therefore the inflammation so surely it's relevant to my high CRP levels, if not why would he suggest it? I'm just not looking forward to having to take both of them at once.

dreamdaisy

There is a chance that by adding the sulph the meth dosage could be reduced, thus easing the side effects. I didn't find that sulph was effective, after years of taking it I began to forget and now don't take it at all. A friend, who also has PsA, is superbly controlled on just six sulph tablets per day, neither of us understands how it is for the other - I say he has PsA lite whereas I have the full-fat version. DD

PS Alcohol is not an issue with sulph much to my friend's delight, he plays rugby.

trepolpen

Maturecheese wrote:

trepolpen, are you only on sulphasalazine or methotrexate as well? Apparently methotrexate and sulphasalasine, being DMARDS control the disease and therefore the inflammation so surely it's relevant to my high CRP levels, if not why would he suggest it? I'm just not looking forward to having to take both of them at once.

I been on Sulpha since 1996 & was on Meth for 18 years , with little side effects + had a biologic as well , on supha + leflunomide now + a biologic which does pretty much nothing apart from making my bloods (crp & esr) look very good , sulpha is a mild drug , its part antibiotic & anti-inflammatory

I got problem with high CRP , four years ago it was 340 with a infection in my hip , when it settled it was around 120 so they put my on high steriods along with tocilizumab but then my CRP was 0.2 , on tofacitinib now & results are the same

they need to give you sulpha + something else but the rules states you have to try these drugs first before going onto a biologic

Airwave!

I stand up for the NHS, the health service is doing well despite the demands put on it.

dreamdaisy

I couldn't agree more, Airwave!, but we're old hands and used to its 'idiosyncracies'.

I had another thought, MC. If the tablets are not working out you could ask to switch to the injected version. That usually leads to a reduced dose of the drug as the digestive system is being bypassed. DD