Bad experience


#1

I was diagnosed 2 weeks ago with parkinsons. I went to see my consultant only to be told my results werent back. I had been waiting 3 months for the results. He sent me to the waiting room whilst he got the results faxed through. He then came out and called a different name so i didnt respond. He then came back out again and called the name again and looked at me, i said "i'm sharon" and he said "yes thats who i mean" I went into his office and he very bluntly told me i had parkinsons . Needless to say i was in shock. He then proceeded to get a scrap piece of paper where he wrote my diagnosis down and asked to be put on l dopa. He then sent me out of the office and then said "your no different". I just rushed out and could barely tell my mum the diagnosis without having to rush out of the hospital. What i hadnt noticed is he had written the wrong name. He had told me to go to see my psychiatrist to be put on the medication. When i got there eventually i was told the letter was meant for my gp. So i had waited to see my psychiatrist when i could of gone sooner to my gp. My gp then told me he couldnt prescribe l dopa as the letter was in someone elses name and was on a scrap piece of paper. My doctor was thoroughly disgusted at how i had been treated and said i should never of been put on the rollercoaster ride i had been. I  am still waiting to go on l dopa and have a 5 week wait to see the specialist. I have had a horrible experience and i can only hope i will get the empathy i need from the specialist. My mum and son have taken the news quite badly but are very supportive as are friends and family and therapy groups i use


#2


Hi Sharon, what a terrible experience you've had to go through.  Sounds like you have a sympathetic and understanding GP which is definitely in your favour.  I know you have a lot to take in and process at the moment, but if you can, make a note of the date you attended hospital and the name of the consultant or (locum consultant) you saw.  When you feel ready a call to PALS (https://www.uclh.nhs.uk/PandV/Helpandsupport/PALS/Pages/Home.aspx) might be useful to discuss your concerns about this appointment because you can probably bet you're not the only one with concerns surrounding this consultant but not everybody will speak up.

PALS were incredibly helpful with me when I called them last Monday.  As I thought, my appointment had been lost in the follow-up system which is why I've been waiting since last year for my appointment.  With their involvement, I now have an appointment with a new Consultant (not a Locum this time) next week which I am more than happy with.

Hopefully they will be able to expedite your appointment so you can start the medication sooner.  Keep us posted on your progress with them.

Take care

Joanie x

 


#3

Hi Sharon

Sorry to hear about the experience you had.

hopefully things will improve.

I have been so lucky with the Neurologist and Parkinsons Nurse that i have.

Wishing you  all the best xx


#4

 

Hello Sharon - PALS can be a great help. Have a word with them to put in a formal complaint about this consultant to the BMA, and to be transferred to another one, which I think you have a right to, you should not have to put up with being treated the way you were, no one has the right to do it.

I'm sorry you had to learn the wrong way that you have PD, and wish you all the best in coping with everything, keep in touch

Good luck - Sheila 


#5
Hi sharon666, Your treatment has been horrendous. Definitely make a complaint. I had a smaller situation with my consultant. I told my Pd nurse and she instantly suggested a more PD sympathetic consultant. So maybe if you have or can locate a Pd nurse in your area they're normally a lot more in tune with their patients.

#6

Hi Joanie yes i have a very helpful and understanding gp. I have already contacted pals and am awaiting a reply, thanks for your reply and i hope your appointment hoes well for you x


#7

Hi thanks for your reply i have made a complaint to pals and am awaiting a reply thank you x

 


#8

Hi sheila yes i have reported him to pals a formal complaint. I appreciate the reply thanks x


#9

Hi i have made a complaint and am seeing a pd nurse soon so hopefully she will be better thank you x


#10

Good on you Sharon for getting things moving and now hopefully you will notice a vast improvement in your treatment going forward.  If you can, keep us updated with your progress *hug*


#11

I will do and thanks i feel better already with all the kind messages including your own x


#12

Hi Sharon666.......reading your post and your dreadful experience reminded me of something similar that happened to me. Suffice to say, I complained to PALS about my neurologist and also my PD nurse, as they both made mistakes and caused me a lot of heartache. The guy from PALS was very understanding, but don't hold your breath about much being done about your experience. I did get a letter containing a kind of apology, but mostly it was full of excuses and ludicrous reasons for the mistakes made. The upshot was that I changed hospitals in the end.

No-one should be treated badly or made to feel insignificant, by people to whom we entrust our care. So sad that you had to go through all this.

Take care.

Twinks.


#13

Hi twinks sorry you had a bad experience to, i'm just hoping PALS will do something or i'll take it further thank you x


#14

 Hi all just to let you know i finally got my medication and diagnosis in writing. Hopefully now things will go as planned with no more hiccups smile


#15
Hi sharon666, Glad its all sorted. Now you can take time to absorb the information. What meds are you on?

#16

just been started on L Dopa


#17
OK. I'm on Ropinerol (dopamine agonist), so I don't know much about effects of L Dopa. I'm sure others will inform you more of how they get on with it. Like all meds it can take a few weeks to kick in. I hope it works well for you.

#18

Sharon, it's so good to hear your medication has been worked out for you.  Isn't it such a relief when things start to fall into place. I have my appointment on Wednesday with a new consultant so I will let you all know how I get on.

Enjoy the rest of the weekend x


#19

Thank you smile


#20

Thank you and good luck with your new consultant smile