[jonnyParticipant]

hello, Im Jonny. My husband was diagnosed with MM in May and we have not had a very good experience with our heamtology services. The main problem is that our consultant, clearly a very clever and capable doctor, has few interpersonal skills and sometimes appears to be very abrupt and rude. I have been reduced to tears twice when trying to get information or make suggestions. its now got to the point that I am dreading our next appontment, as i dont know how to deal with this doctor without getting really angry and speaking my mind, which would clearly be counterproductive.
I can imagine that the job of a haematologist can be hard and stressful, having to deal with people in difficult circumstances all the time, and i can imagine that some have to become self protective, so I ma doing my best to make allowances and see their side of the picture. But surely some warmth and a littel obvious empathy is not too much to ask, is it?
Has anyone had a similar experience and/or can offer any advice about how to develope a constructive realtionship? Many thanks

[EvaParticipant]

Hi Jonny,
This is Eva. I live in Scotland and was diagnosed two and a half years ago. I've been on a very interesting journey with haematologists. I would prefer to have a dialogue with you about this. I would be prepared to talk on the phone and call you back as I have free phone calls. Otherwise, my email is evayouren@lineone.net.
Best wishes,
Eva

[EvaParticipant]

By the way, my number is 0186283 2148.
Eva

[DebsParticipant]

Hi Jonny,

I had something similar. My consultant in Bucks just made me feel like I was asking silly questions (and believe me, no question is silly with this), like I was being overly paranoid and like I should just go home and accept it all quietly. At the same time, he hadn't even heard about things like curcumin.

We got a second opinion from Prof Morgan and then got my GP to refer me to him as we felt like the Marsden handled me much much better, answered questions and were generally very helpful. They seemed to understand what I was going through and want to help me.

So I would suggest that you think about either talking to him about how he is making your husband feel, changing your haematologist in your current hospital, or considering if you have another hospital that you would happily travel to. We have to travel 90 mins now to get to the Marsden, but I feel it is well worth it for the care I'm getting. It'll be hard when it comes to my SCT in April as it means I won't see much of my children, but hopefully we'll get a better long term gain.

Feel free to message me if you'd rather talk off forum

Debs x

[NettieParticipant]

Hi Jonny

I am sorry to hear you have come up against a doctor who does not give you the support and confidence in him that you so desperately need and deserve at such a difficult time.
You have the right to ask to be transferred to any hospital if you feel that the one you are attending is not right for you. You do not say whereabouts in the country you are located but members of this forum are from all regions and it may be helpful to ask here for recommendations for around your area. The Royal Marsden in London is excellent and although I have not met Prof. Morgan I have heard nothing but praise for him.
Traveling away from your area may not be an option, in which case I would recommend that you contact the Infoline on this site as the Nurses are second to none and will answer any questions you may have in a empathic and straightforward way.
I hope you soon get the support you are looking for and wish you and your husband all the best during the coming year. Please do keep posting and let us know how you are getting on.
Love Nettie x

[jonnyParticipant]

Thanks for the constructive replies received. I will make contact with those who have so kindly given me their numbers shortly. Things are a bit pressurised here as my husband has had shingles over Christmas and it has set him back. He also has eating problems and has been fed via a nasogastric tube for several months, which I manage. We are trying to get him back to proper eating so that the tube can be removed, using frequent tiny meals and so now i know what a mother bird feels like, stuffing food into her chick every ten minutes or so. His weight dropped to 44kg at one point but he now weighs in at a massive 57kg (just under 9st in old money). Not much for a 6ft man, but it represents a lot of progress from the low point of last summer.
your suggestions about changing consultant were very helpful. Unfortunately we live in rural North Wales, so getting to London on a regulare basis is not an option. I will speak to the GP and ask his advice. Its great to have access to this forum, it makes one feel less alone.
Kindest regards
Jonny

[MinParticipant]

Hi Jonny,
I can empathise with you, as I always felt Peters consultant had no bedside manner from the day he told him what he had and how long he had!
Its now over 16month since we first met and I know now he does his very best for Peter, and gets the results we want to hear. Not always delivered with warmth or feeling, but we have gotten to know him better as time has gone on. A 15minute consultation once every 6 weeks did nothing to make me like him more but Peter respects his judgement and as time has gone on I realise more and more he does know what he is doing!
This may sound rather crass but after several months of seeing a kidney consultant who had a lovely bedside manner but was just about useless medically; I would rather have rude and abrupt as long as they are capable with knowledge of their chosen speciality. It takes along time to build up a relationship of trust, I didn't like him but peter has a lot of confidence in his ability. Is your husband happy with him? Is he making progress, if so I would say better the devil you know.
Like you my husband was a 6ft 141/2stone relatively healthy individual who went down to 5ft 6inches and 10 stone and eventually regained some of his weight though not all of his height. He was not fed by tube but I remember feeling like a mother hen to get him to put weight on.
Regards
Min

[tomParticipant]

Hi Jonny

So sorry you have come across one Consultant that has no Bedside charsma (so to speak)
But like all us mere Mortals you either have it or you aint and your man bless him aint got it.

Mine is great I even chat to him in the middle of the shpping centre when he is out shopping 😀

As for me if mine was abrupt or rude he would have to be told "Fast" as its My Life that he is dealing with.

But if he is sharp and knows what he is doing then he can be rude as long as he knows he will get it back ha ha.

Good Luck to you Both and hope you soon get to "Bond"

Tom "Onwards and Upwards" xx

[GillParticipant]

I am so sorry that you have a difficult time with this doctor. Heavens you have enough to go through without that as well.

I hope you find a way to approach this particular person (they are only people underneath their training) and explain that he is a bumptious, unpleasant human being that should take a few inter-personal skill classes:)

On a more serious note is there a nurse that you could explain to how upset you feel? Or could you take another family member or friend with both of you next time your husband has an appointment? Sometimes it is easier for somebody not quite as close to the patient to speak their mind then and there.

Please keep us posted and good luck Gill

[KWilsonParticipant]

My heart goes out to you on reading this! It makes me SO angry when I hear of consultants like this – it's SO unnecessary. If you aren't in a position to change hospitals then have you thought of trying your Patient Liaison Services – I believe all hospitals have one, they may be able to help you address this problem.

Meantime, good luck with your treatment.

xxxxxxxxx

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