Hospital Appointments

[Tommie]

Happy New Year to you all. I spent Christmas with a chest infection! Finished work then the next morning woke feeling dreadful, I still have not recovered properly. My husband knows how to cook a roast dinner now - so was not all bad!!
I have my 3rd appointment at Kings on Monday? How can I make the most of it. Each time I have been I have seen a different Dr. They look through my notes but I don't seem able to find out much information. I still don't really understand all the ins and outs.

What about seeing the specialist nurse. How do you see her? Even though I get there early for the blood tests they don't seem to have them at the appointment.

I would be gratful if anyone can give me any pointers.

Many Thanks

[janetstanford]

Hi Tommy

sorry to hear about the infection me 2 came with cold on NYE and spent NYD in bed and it has now infected my sinus so went earlier to get antibs but good your husband can now cook a roast
i am sure because you see different doctors this can be confusing and upsetting i know not a lot of info is given i did have this problem but i self educated myself which was long and slow and not without problems i believe so many of us on this site have done so !

i would contact Sophie and discuss with her options and choices i am sure she can give you questions to ask and point you in the right direction
also she can send you a book 101 questions of MDS that should help
you could request an appointment with your nurse specialist which i believe is a good idea hope you do
for example ask her to discuss the results of your last blood test explain all HB White cells platelets ( i would get a copy after every 1 then you could google ect /research)
also you could discuss your issue at seeing more than one doctor and request to see the same one i believe this falls into the NHS charter and comes under CHOICE your choice i am sure she / he will be able help you and put your mind at ease
well i hope that helps in the first instance enough to be going on with please let me know the outcome did it help
please take care Janet

[chris]

Hi Tommie

Sorry to hear you have been poorly and hope you are recovering now?

Janet Hayden is the Clinical Nurse Specialist at Kings and she has been to several of the MDS Patient Fora I have attended. She is lovely - really kind, supportive and very well-informed. I'm surprised you have not been given her contact details but why don't you try to telephone her in advance of your appointment next week and ask if you can see her before or after your consultation? I'm sure Sophie must have her contact details at King's? If not, ask the doctor next week if you they can give you her details.

Take with you a list of the questions you need answers to. e.g. How would you categorise my IPSS Risk at the moment? Are there any special precautions I need to take? What treatments do you think I will need in the immediate/distant future?

I think if you can be honest and say that you are finding it all quite confusing and would appreciate some explanation, then the doctor you see should be able to do that for you. Maybe on the 3rd time you will be lucky and see one of the previous doctors again?! My experience is that as a patient you do need to be quite proactive and persistent with getting your questions answerered - though, to be fair, I guess that a lot of the questions are still not answerable given the level of knowledge "out there" about MDS. At King's though, generally held to be The Centre of Excellence for MDS, there can be no excuse for not giving patients as much information as they need?

Good luck next week and let us all know how you get on.

Best wishes

Chris

[Jayne]

Hi Tommie

I was so sorry to hear you have been ill (and you Janet). There has been such a lot going around. My husband and both children had horrible colds and my Mum and Dad have been really ill with various things. I have been fine! I did say to my Prof that I never get ill! Which I dont except for MDS! So when I get ill my body does it with a vengeance!

Anyway, I am somewhat confused as to why you appear to be receiving a poor level of service when you are at Kings. Like Chris says, they are deemed to be The Centre of Excellence. I am at St James and have no complaints whatsoever with my treatment and I am sure this helps me in the way I respond to each appointment. I would do as Chris and Janet have suggested and contact Sophie. They all seem very close, I know she knows my Professor and is quite good friends with my clinical nurse so she surely must be able to help you and guide you to the right people, especially when she is in the same location as them. I have the email address of both my Prof and nurse, I rarely email them as I dont want to be a nuisance but also that when I do need to know something they will know it is because it is serious and I am not crying 'wolf' all the time, if you get my drift.

I do hope you feel fighting fit soon, and I will be thinking of you on Monday. Please let us know how you get on or if there is anything else we can help you with.

Jayne x

[janetstanford]

Jayne
A question how do you have the e-mail address of nurse and prof is this just a service your hospital offers have to say seems a fantastic idea just do not know why it seems to be the norm in all hospitals

Janet

[Jayne]

Janet, I just asked!!

I asked my prof if I could have it, he gave me his and the clinical nurse who works alongside him.

Jx