Bad news

Sorry for any confusion. Currently I'm treated at a hospital which is run by another local health board, the new rules mean that I MUST be treated in a hopsital only at my local health board. Below is some information on what the current rules are

“It means that if a service is available in your LHB area, a patient must use that service and does not have the choice to go to another hospital.

“You will only go elsewhere if a service is unavailable in your LHB or if your doctor can make out a case – by filling out a long, time-consuming form, and this does not take into account any research needed to support the case.

From what I have been reading the last few days it's going to be difficult to stay where I am but won't give up without a fight. I would say that I have some very strong reasons why my care should remain where it is, most of which my doctor agrees with.

I think the reasoning for this is all down to boosting figures of waiting times and budgets etc.

I would say funding is also a big part of it.

No such service like PALS here I will have to ask about what's best to approach the situation.

I have sent them a reply to the letter I got, it took them 2 months to reply last time so hopefully they take just as long.

Probably a silly question....but at which hospital would I be best looking for this type of service? My current hospital or the new hospital

Thanks for that info, I have been advised by my gp to arrange my first appointment at the new hospital and to try and get the rheumatologist there on my side. Since I canceled my appointment a few weeks back the best date they can give me is Aug 2014. According to my doctor my treatment at my current hospital will not be moved until my appeal/dispute is resolved.

I will look into the pals situation sometime next week, been so busy with university stuff that I haven't had the time or energy to hunt down the required information

After lots of calling around and being passed from person to person, it looks like I might have finally made a breakthrough with a valid "clinical" reason for my care to not be transferred. My current hospital offers specialist physiotherapy treatment for AS, the new hospital cannot offer such treatments. According to the person I have spoken to my care cannot be moved to the new hospital unless they are able to match the level of care that I receive now.

Toots wrote:

As5567 wrote:

the best date they can give me is Aug 2014.

Holy bob on a dipstick :shock: I'd suggest that this is sufficient reason for not moving hospitals, if you have to wait 10 months!!!!!!! :shock:

Apparently my fault because I canceled my last appointment with them

On Monday the new hospital called me, and offerd to arrange a meeting with the new rheumatolgist and her team.

They were nice enough and made me feel welcome, all was going well and they were listening to my concerns and actually agreed that some of them were very valid and needed to be taken into consideration. We then spoke about my current treatment, she seemed to be rather confused as to why I'm on Inflixmab, she said that I will not be able to receive this treatment with the new hospital because it's not approved by some NHS guidelines (not sure of the name? niec or something?) she went on to say that Infliximab is only used to treat AS in very exceptional circumstances which don't apply to me. I asked why can't my treatment continue as it is if I'm being forced to transfer here and she simply says that's the rules sorry nothing I can do.

She said that I would be put on a new treatment following the hospitals guidelines what ever that means. They will take into consideration of the treatments I have already tried but may try me on a combination of old treatments and new. This has really caused me a lot of stress and worry now and I'm already starting to feel it's effects on my joints tonight. I know exactly what will happen if I stop Inflixmab, I will gradually go down hill (which I feel happening 2-3 weeks before each infusion) I will eventually get to the point of no return where I enter into a flare which will make me bedridden. This will cause me to fail university, waste 4 years of my life and put me some £40,000 into debt with poor career prospects. All because of more stupid "rules" "guidelines" what ever they want to call their poor excuses to cut costs!

I have sent my rhumatolist's secretary an email so hopefully he will call me tomorrow or next week.

I have spoken to my family about it and they are also very concerned, but my Aunt seems to think this might go in my favor as a clinical reason why my care should not be moved.

So today waiting for my at my appointment stapled to the front of my notes was a letter to say that my doctor cannot give me any more appointments at that hospital and that all of my care has now been handed over to the new hospital.

I have had confirmation that I will be treated as a new patient but things in my notes will be taken into consideration...what ever that means. My Inflixmab will most likely be discontinued because it's not approved by NICE for use in my condition.

All of these cost cutting measures are beginning to get really stupid, moving patients to less favorable hospitals to make waiting times and cost savings look better on paper is not a solution to the real problem, the hospital I'm moving to really does suck and the sooner they take note of that the better the services will get.

It will be very interesting to see what plan of action the new hospital come up with, which drugs they expect me to take is anyones guess....and the fact im being treated as a new patient really does scare me, I am not prepared to go through months and months of Nausea, sickness, reactions and all other nasty side effects.