[susieParticipant]

Hi All,

I’m in need of some advice or opinions please, as I don’t quite know how to move on. Here is my concern.

I have been first monitored for MGUS then when it progressed to active myeloma for about 7 years, always under the same consultant, in who I had a good relationship and complete confidence in. He sadly retired some six months ago and his place was taken by a new consultant, since when I have always been allocated to a junior registrar. I haven’t even met this new consultant. Fine when I was just being monitored but I have now relapsed and am on the 2nd cycle of MVP, which has affected me quite badly.

At my last appointment I was seen by a locum who I found rude and arrogant. As I entered his room his first words were “I’ve been waiting half an hour for you”. When I pointed out I was on time for my appointment his reply was “the previous patient was half an hour early and most patient get here early” It completely threw me. For the rest of my time he wouldn’t listen to anything I said and was over talking me all the time. I couldn’t wait to get out of there.

All this has really upset me. I don’t feel I have any confidence in their care any more. I wonder why I never see the new consultant and I beginning to feel quite paranoid, is there a reason. I know I do ask a lot of questions and query things etc. Perhaps they don’t like it.

I’m sorry for the long rant. I really would appreciate some advice or opinions on where I should go. I’m due back on Thursday and am dreading going back.

Best wishes to all

susie

PS I would just add all the chemo nurses are absolutely wonderful, professional and so knowledgeable.

[Anonymous]

Hi Susie

What you have described is so unacceptable.  Why not, at your next visit, insist to see your consultant. Have someone with you who will help with the insistence. If this doesn’t work, but it should, is there a different consultant you could move to? One who you know from other patients has a professional caring attitude?
I myself moved consultant because my first one lied to me about what agreements I had made regarding treatments. I had notes to prove I was right, but rather than continuing with someone I no longer trusted, I changed consultant.

I didn’t get any support internally to move. I did ask for advice from the Specialist nurse, but she encouraged me to stay with him saying he was top notch, and in control. I had explained how I found him very forgetful, repeating the same “ramble” at each consultation, and not giving much attention to what I would be saying.

Considering how this person spoke to you, would you consider making a complaint, even anonymously? We all deserve better than that.

Just in addition: when I was diagnosed, the Registrar I saw said, “I don’t believe in messing about so I shoot from the hip. You have Myeloma!”. Caring individual, wasn’t he!
Good Luck Susie!
Jan

[susieParticipant]

Hi Jan

I just wanted to thank you for responding to my thread.

I still feel disturbed by the whole thing and I dread going on Thursday for my velcade but it has to be done.

May I ask, when you changed your consultant how did you do it and did you move to another within the hospital you were being treated at or did you go to another hospital ?

My hospital isn’t the main one within the trust. In the last year its care leaves much room for improvement. Half the staff have left and they can’t recruit apparently. That’s the NHS of today I suppose.

I don’t really know other myeloma patients there. I did join a support group held at the main hospital but I found them so “clicky” I stopped going.

Best wishes to you

susie

[cygnetParticipant]

Hi Susie

I am sorry to hear about your experience – you don’t need the stress when you are undergoing treatment.

Have you thought about talking to one of the Myeloma UK nurses on the Helpline? I spoke to them when I had problems with my hospital clinic and they were very helpful. So was my gp who immediately offered to refer me elsewhere – so maybe you could talk to yours?

If you remember the locums name you can ask to see someone else – I can’t believe he runs the clinic by himself. I always ask to see the same doctor (an Associate Specialist ) when I go now as we have built up a rapport and I have confidence in her.

There should also be a patient support  contact at the hospital who is there to help.

Good luck!

Hugs,

Cx

[susieParticipant]

Thanks cygnet.

I will try the info nurses and see if they can suggest a way forward.

I didn’t get his name. He was Indian/Asian and didn’t speak particularly good English.

I shall ask to see my named consultant but whether they will comply I don’t know. Will give it a try.

Thank you for your good wishes

Best wishes

susie

[susieParticipant]

Hi, Had my appointment again today. Bloods very low, with Neuts now at 0.8, WBC 2.4, Plts 127. Despite this they went ahead and gave the velcade. The consultant did come and see me and he thinks its the melphalan causing bloods more than the velcade. He warned me that I’m at real risk of infection which I find very worrying. I just await next week when my 4th velcade is due. At the rate I’ve done so far I wont be having it.

One good thing from today, the locum I started this thread about has gone. They apparently had many complaints about him, so I felt vindicated.

Hope everyone is doing better than I am.

Best wishes

susie

[dbrrParticipant]

Having read your posts with interest, I wonder how you are doing after these past months.

Hope you are receiving more compassionate care.

[susieParticipant]

Hi Michael

I”m doing well thank you. Things improved at the hospital and I now see my own consultant who is absolutely lovely. I have 2 more cycles to have of the MVP and apart from the first week of each cycle, when I have to take the tablets, I don’t feel too bad at all from Velcade. My paraproteins are down to 12 from 54 and light chains are down to normal limits.

Thank you for enquiring and best wishes

susie

[dbrrParticipant]

Good news.

[alisonmarshallParticipant]

It’s awful that you have had to put up with such poor care from registrar and locum, you have enough to worry about with the myeloma and the treatment. I too had a problem with registrars who knew nothing about the trial I’m on, I’d also had a series of hospital admissions so got an appt with my consultant outside of main appointments and one of tthe things that was agreed was to only see the 2 consultants that knew about the trial.  I can’t say I like my consultant, bearer of bad news and all that probably, but at least I see the same person each time so don’t have to go over and over. You need to ask if you are unhappy and as said, make a formal complaint, they don’t like that as there is lots of paperwork. Also go may well feel a referral to another hospital would be way forward.  Good luck with the treatment and yes, the helpline is a really good resource

 

 

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