Furious and upset

kaylion

Some of you may know a bit of my history, but I was diagnosed with RA back in January of this year. At my appointment the consultant said that she would like to see me again in 4 months with a view to starting Methotrexate. The appointment came through for the end of July which was more like 6 months but hey-ho. Today I received a standard letter saying that my appointment for the end of July has been changed to the middle of December - no reason, just a normal appointment letter!

I am so angry and upset. Since my last appointment my wrist and neck pain has been joined by pain in my toes, hip and knee. I know that the specialists are supposed to prescribe asap to avoid joint damage, but it will be almost a year after my diagnosis that I am even seen again. I called the hospital and spoke to my consultant's secretary who said that the December appt was the next available - apparently they have had a lot of sickness, holidays and conferences this year!! The best she could offer was that I called the rheumatology helpline but I don't think they can prescribe methotrexate for the first time can they??

I really don't know where to go from here.

Kay

kathbee

Hi Kay

I'm not surprised you are furious and upset, anyone would be.

Its not on that you have to wait yet another 6 months before you see the rheumy dept, you shouldnt have had to wait until July as it is.

I suggest you phone the rheumy nurse and insist on an earlier appointment, or see your GP so that he can get you an earlier appointment and if all that gets you nowhere, write to the Chief Executive of the hospital concerned, although your GP should be able to get you an appointment.

I think its diabolical and can't believe it.
You need to get onto some DMARD's as soon as possible after your diagnosis, as it seems like the symptoms are worsening.

On Monday, please make the necessary phone calls wont you and let us know the outcome.

Kath

vonski

Hi Kay

I echo everything that Kath has said. Bombard the Rheumy, consultant or nurse for an earlier appointment Ask if you can be put on the list for any cancelation that comes up. Also speak to your Dr. about it all and ask if they can do anything to help.

Hope you do get seen sooner.

Love
Vonski x

woodbon

Hello, I think that everything the others have said is right. If you go to see your GP, and keep them on your side, they should be able to get you an appointment. Also, phone the consultants secretary and ask for an explination about the change of dates and why you now have to wait so long. In other words keep asking and don't let it drop. They may give you an earlier appointment. Hope you soon get sorted. You need medication if you have RA.
Love Sue

jaspercat

Hi Kay, I agree with Sue, you should see your gp asap, get him/her to write to the Rheumy, they should be able to get you an advanced appt, I have had this trouble before, I am still waiting for a letter from my Rheumy that she dictated 2 weeks ago, the other thing you could ask is if there are any clinics where you could see your Rheumy love Jaspercatxx

joyful164

Hi Kay

I agree with everyone else, the disappointment itself is enough to make your condition much worse and you don't need the stress on top of the pain you are already suffering.

The excuses given are not good enough, and with that in mind, I would write to your MP aswell.

As soon as they receive a letter from him/her they must see you.

My husband wrote to our MP of the time when there was a big mess up with a similar situation after his heart attack. Did wonders.

Good luck

joyful

lesleygraham

Hi
A similar thing happened to me. My gp messed about for months when I begged him to refer me to a rheumatologist. In the end I went private and got an appointment within two weeks, (about £120) but it allowed me to jump the queue. Not ideal, but I was seen much more quickly. If you are suffering badly, your gp may be able to give you a steroid injection which should help.
Take care
Les

mistywillow

kaylion wrote:

Some of you may know a bit of my history, but I was diagnosed with RA back in January of this year. At my appointment the consultant said that she would like to see me again in 4 months with a view to starting Methotrexate. The appointment came through for the end of July which was more like 6 months but hey-ho. Today I received a standard letter saying that my appointment for the end of July has been changed to the middle of December - no reason, just a normal appointment letter!

I am so angry and upset. Since my last appointment my wrist and neck pain has been joined by pain in my toes, hip and knee. I know that the specialists are supposed to prescribe asap to avoid joint damage, but it will be almost a year after my diagnosis that I am even seen again. I called the hospital and spoke to my consultant's secretary who said that the December appt was the next available - apparently they have had a lot of sickness, holidays and conferences this year!! The best she could offer was that I called the rheumatology helpline but I don't think they can prescribe methotrexate for the first time can they??

I really don't know where to go from here.

Kay

Hi Kay
I would have steam issuing out if I were you. To wait for so long when you have RA is totally unacceptable. As the others have said, it is important to get it treated early before joint damage ensues. I have RA too and I know how dreadful it is before you get on treatment. You have to make a real noise at whereever you can to get an early appointment. If all else fails, and I dont know your financial situation, but getting a private appointment will be easier. I know our NHS can be great but sometimes it really lets people down too.
Generally I think a consultant charges about £100 to £150 for a first appointment and once you are on methotrexate your GP or someone has to monitor you. I think if possible and you cant be seen earlier maybe you should take that approach, although hopefully it wont be necessary. But dont wait until December to see someone.
Hope you have some luck with it
Gillx

sharmaine

Hi Kaylion
I'm sorry to hear that your appointment has been cancelled you must be extremely disappointed. If only they realised how devastated this makes a person, already in discomfort and pain feel. I hope something turns up for you. Could they not ring you should someone cancel?

I'll keep my fingers crossed for you.
Sharmaine

kaylion wrote:

Some of you may know a bit of my history, but I was diagnosed with RA back in January of this year. At my appointment the consultant said that she would like to see me again in 4 months with a view to starting Methotrexate. The appointment came through for the end of July which was more like 6 months but hey-ho. Today I received a standard letter saying that my appointment for the end of July has been changed to the middle of December - no reason, just a normal appointment letter!

I am so angry and upset. Since my last appointment my wrist and neck pain has been joined by pain in my toes, hip and knee. I know that the specialists are supposed to prescribe asap to avoid joint damage, but it will be almost a year after my diagnosis that I am even seen again. I called the hospital and spoke to my consultant's secretary who said that the December appt was the next available - apparently they have had a lot of sickness, holidays and conferences this year!! The best she could offer was that I called the rheumatology helpline but I don't think they can prescribe methotrexate for the first time can they??

I really don't know where to go from here.

Kay

emmarose33

This is not acceptble.
I have had my last 4 appointments cancelled, but every time I was able to get an appointment sooner than the one first offered to me, ususally within a week.
You should call the secratary again and ask to have the consultant ring you back as your illness is getting much worse and you cannot cope.
My physio told me nice guidlines state that during a flare patients with RA should have almost immediete access to the rheumatology clinic if necessary.

kaylion wrote:

Some of you may know a bit of my history, but I was diagnosed with RA back in January of this year. At my appointment the consultant said that she would like to see me again in 4 months with a view to starting Methotrexate. The appointment came through for the end of July which was more like 6 months but hey-ho. Today I received a standard letter saying that my appointment for the end of July has been changed to the middle of December - no reason, just a normal appointment letter!

I am so angry and upset. Since my last appointment my wrist and neck pain has been joined by pain in my toes, hip and knee. I know that the specialists are supposed to prescribe asap to avoid joint damage, but it will be almost a year after my diagnosis that I am even seen again. I called the hospital and spoke to my consultant's secretary who said that the December appt was the next available - apparently they have had a lot of sickness, holidays and conferences this year!! The best she could offer was that I called the rheumatology helpline but I don't think they can prescribe methotrexate for the first time can they??

I really don't know where to go from here.

Kay

kaylion

Thanks for all your advice - I thought I'd give you all a quick update. I called my rheumatology helpline on Friday and they called me back this morning. The upshot of it all is that I now have an appointment on Wednesday this week! Can't believe it and have to say how impressed I am with my helpline team.

kathbee

kaylion wrote:

Thanks for all your advice - I thought I'd give you all a quick update. I called my rheumatology helpline on Friday and they called me back this morning. The upshot of it all is that I now have an appointment on Wednesday this week! Can't believe it and have to say how impressed I am with my helpline team.

Thats great news Kay.

Hope the appointment goes well for you.

Kath

joyful164

kaylion wrote:

Thanks for all your advice - I thought I'd give you all a quick update. I called my rheumatology helpline on Friday and they called me back this morning. The upshot of it all is that I now have an appointment on Wednesday this week! Can't believe it and have to say how impressed I am with my helpline team.

Hi Kaylion

So pleased you have got your appointment through quickly. I do hope it goes alright for you. Shall look forward to hearing about the outcome.

allthe best

joyful

frogmorton

Well done Kay!
Hope all goes well for you on wednesday!
Toni x

vonski

Hi Kay

Well done, good luck for Wednesday.

Love
Vonski x

debatat

Thats brilliant, good luck for Weds.

Deb

jeannie2

Yipeee, so glad for you. Glad also for the advice from the folk on this site - they speak a lot of sense these guys do.
Hope it goes well, let's know.

I'll have to stop now ... my hands are murdering me.
Jeannie S

lindalegs

Someone's after our money again folks. This is just someone wanting free advertising space, I suggest we all ignore it :x :x

I shall report it to the moderators to see what they think.


Luv Legs

jean123

Hi all,

The holiday advert has been removed in accordance with our terms and conditions.

Jean123 (forum supervisor)

sharmaine

Hi Kaylion

Great news! I hope your appointment went ok. I'm still waiting to hear about mine!

Sharmaine

kaylion wrote:

Thanks for all your advice - I thought I'd give you all a quick update. I called my rheumatology helpline on Friday and they called me back this morning. The upshot of it all is that I now have an appointment on Wednesday this week! Can't believe it and have to say how impressed I am with my helpline team.

tkachev

Brilliant news!
There is no way you could have waited until December.
By the way I have an appointment on wednesday too it is the date of my hip replacement op!I am feeling sick with worry

Tkachev

jean123

I have forwarded Katarinajak's request to the appropriate channels for consideration.

Regards,

Jean123

kaylion

Hi everyone

Just a quick update. Had my appointment last Wednesday and they have prescribed me with MTX. Haven't taken it yet - am a bit nervous, but plan is to take first dose on Wednesday. Here's hoping it helps!

Kay

jaspercat

Hi Kay, glad everything worked out well for you, hope your appt on wednesday goes ok and you get the treatment you need love
Jaspercatxx

frogmorton

Hi Kay
brilliant that you've been seen. No be brave and get your meds down you!
Do let us know how it works for you - so pleased for you
Love
Toni x

debatat

I am pleased that you got on so well. Mtx is supposed to be very good. I hope it works for you, did you get prescribed folic acid to take as well?

Deb