getting an earlier appt

jordan7j

Hi all, just an update from the last post. Had my blood done on Friday 22nd and explained to the nurse that I cant get an appt and had phoned the nurses and not had a reply yet. She told me that no one was available as all at the other hospital, but to call and leave msg again. Did this, and then went to see GP, it was the same one as before, (only one available) she said she cant prescribe anything without the specialists say so, as if anything goes wrong she will be struck off!! She suggested a private consult, and gave me a card for the London Bridge Hospital, GP liaison centre.
Later that day I received a call from the nurses, I explained my problems, pain, swelling etc and he said that I need to speak to the specialist nurse who wasnt available but may be by Monday. I have an appt with the haemophillia clinic re my bruising, so will see if they call me back.
Re the private consult, I will call and get the facts and may do this, as its becoming ridiculous now. Hoping for the best, take care all x

elnafinn

Dear Jay

It really is very unfair when in desperation the only solution appears to be to go private to obtain the quick attention we feel we need. Let's hope that somehow you are able to get an earlier appointment without going down that road. It is expensive but if the money can be found it can at least set you on the road to getting some good help and attention.

I hope this week brings much better results for you to go ahead via the NHS.

Love
Elna x

annie_mial

Jay, I agree with Elna, this is just not fair on you. They can't even say you haven't been trying their suggestions or that you haven't been patient enough.

Have you tried the complaints system at the hospital? Don't know which one you are with and have had no dealings with them myself, but it might be one way round it. A lot of peeps seem to have had some luck that way.

Good luck, take care
Love

Annie

elnafinn

Good idea Annie. I second that.

Jay - do get onto PALS. It was perhaps a kind thought of your gp to pass on details of a private hospital but rather cheeky really, to say the least.

Love
Elna x

skezier

Hi Jay,

I can only agree with Annie and Elna and just hope it all comes together for you soon and the NHS gets on and see's you. Fingers crossed, Cris x

jordan7j

Thanks for replies, I am just so fed up with the system!!! The other suggestion was to go to A & E but they cant do anything. The secretary said they are so overbooked that even the people booked in for March have a long wait to be seen. I had no idea it was like this, I just assumed that if you needed to be seen then it would be done.
I know they have stated that the meds may not be working due to me caring for young children, but surely something should be workig by now?
If it goes on like this I will have to stop working anyway, as physically I cant do it any more. Another GP said dont be too hasty to give u p as the meds can be sorted, but how when I cant even get seen?
Havent been on to PALS as yet, I am at Guy's a teaching hospital in London, which has a good reputation, but at the moment isnt living up to it!!
Thanks everyone x

elnafinn

Hi Jay

I do not really see the logic behind what has been said, that the meds may not be working because you are childminding :!: Does that mean that they would be working if you sat around all day :?: Can this be guaranteed? Well I would not have thought so, would you?

Is there any chance of you being referred to another hospital? As you are in London there must be quite a few around. This is really a desperate situation and will not be doing you any good mentally at all, let alone physically. Surely your GP can see this. We all can and of course you know.

Love
Elna x

salamander

Hi J, have you tried asking for a telphone consultation with your Consultant? Mine has said to ring if I get into trouble and he will talk to me. It's what my GP practice does all the time as well. If they know you already they can make decisions over the phone and don't always need to see you every time. It's worth a shot - you might be able to convey your concerns more urgently that way too.
Sally

jordan7j

Thanks for replies
Elna - my GP did suggest changing to anothjer consultant, but its another 8-12 week wait for that, so March is closer, as for them knowing that if I wasnt working the meds would be fine, I havent a clue, maybe they are psychic eh!!!
Sally - I really have no idea about a phone consult, as the secretary just said no appt available, didnt mention beig able to speak to the consultant himself
I callled about a private consult today, its going to cost £200 which is more than I thought, but then it is London. Dont know what to do, as I knoe I need to be seen,but dont want to feel that I am so important that I go private. I know that sounds stupid, but I dont know what to do now

elnafinn

Dear Jay

Why don't you ask your consultants secretary if he would not mind calling you. There is no harm in asking is there, you can only be told, yes or no and if you do not ask, you will never know. As you are now aware that there is such a thing as a phone consult, in some areas, you have a little bit of ammunition there, haven't you?

You are very important, my lovely and if that is the only way forward going privately :roll: :x :x and the money is there, go for it. It is really anoying and ought not to be necessary though so I would try all other options first though.

Remember, you are important, so please do not underestimate yourself when on the phone to your consultant's secretary. We do unfortunately have to fight for attention with the medics.

Love
Elna x

jordan7j

Hi Elna, thanks for the comments, I will call the secretary again, and ask about a phone consult. I didnt know you could even do that, as you say, I think thats the problem keeping informed, it seems you only get to know what they want you to know!! like "a need to know basis, and I dont need to know!!"
Roy has said to make the private consult, it is worth it to get seen by someone with time to listen, and take into consideration the problems etc. As I am waiting for results from other tests, re MCTD as showing signs of lupus etc I think the private consult would actually do something!! not just tell me to wait and see as is what always happens with the rheumy clinic. Thanks for the advice Elna x
By the way all the tests were negative, I was told in Dec by the haematologist

salamander

hi J, please try and get a phone consultation before you spend £200 or write your consultant a letter. It's a lot of money and I bet the they would not want you to spend that going to another dr - who will not have your medical records and blood results in any case. S/he probably has no idea how you are feeling right now. It's not in their interests to let their patients suffer

Let us know what you decide to do and how you get on.
love Sally x

elnafinn

Yep, I am with Sally, do your utmost to get it across to his secretary that you do need to have contact with your consultant by phone or appointment and if there is no appointment a phone call from him would be very much appreciated.

Sally's suggestion of writing a letter is a very good idea too.

You really should not have to pay out to go private.

Chin up luvvy,

Luv
Elna x

jordan7j

Hi, I know its a good idea to phone and ask for a phone consult. As for a letter, I dont think there is any point, as if they say no to a GP letter, theres no point in my doing it too.
The consultant I am under is not very easy to talk to, when he diagnosed me he spent more time outside with another patient, and then looked at my x rays and said "do you get any pain in your feet" I replied that I get pain every day, all day. His reply "OK then lets call it RA" then he disappeared again, then gave me a mtx leaflet to read and said this is your medication. I will give you an injection now, then a prescrition to get from pharmacy. That was it. I didnt even know I needed regular blood tests til the pharmacist told me, or when to book another appt for. So you can see my reluctance is wanting to speak to him!! I still dont know why you dont take mtx when you have infection etc, as I only found that out by reading it on here!! I have a bad cough at the moment, and took my mtx on Fri as usual, dont know ifI should or not though. Thanks for your help everyone, but think its got to be the private consult for peace of mind, and for pain relief and some understanding of this condition. Jay x

elnafinn

Dear Jay

I so wish you well with this private consultation. You have obviously given it much thought. You have made a decision. That is good. Use your time wisely whilst you are in there - easy for me to say, I know - write questions down and take a pen and paper and ask him to slow down if he is going too fast and if you don't understand the terminology, get him to repeat it in laymans terms. I hope OH will be able to go with you as two heads are better than one and OH may well think of other questions to ask and so on.

I must say your consultant did not sound as if he was giving you the patient care you deserve. Hopefully you will not have to ever see him again. If that is the case, it may give you some satisfaction in the near future, to write a letter of complaint to PALS because why should he neglect his patients?

Sleep well tonight, Jay and I hope you get the ball rolling very soon and even more importantly some results and the care from the medical profession that you deserve.

Love
Elna x

salamander

Hi J, your consultant does sound a bit rubbish. Maybe, by getting a private consultation, you can at least get some understanding of your illness, treatment and care. Though it makes my blood boil to think you have to do this. Elna's right, use the time well and maybe even ask if there is particular consultant s/he could recommend for NHS care in your region and see if you can get a gp referral. You might even find the private consultant does NHS care and will transfer you over. I had a private consultation once and he did exactly that.
Good luck.
Sally x

jordan7j

Hi Elna, I have made the private appt, its for Friday at 2 oclock. I still havent heard from the nurses, so it looks like they wont bother, I have heard other people say they dont call back.
I will write to PALS though, its a very bad way to treat people.
Thank you for the advice on what to take, and take someone with me, Roy is coming so thats ok.
Will keep you all informed, love Jay x