[adewParticipant]

Hello,

My Dad has had Myeloma for just over a year now. We are extremely unhappy with his treatment and want a second opinion at another hospital.

I can’t find much information online as to which hospitals/ clinics are the best in the country for treating Myeloma or who are the specialists in the UK. Can anyone recommend a service they received excellent treatment at, or if anyone knows which hospitals provide the best treatment?

Any help would be greatly appreciated, we are desperate.

[annlynnParticipant]

what exactly is wrong with his treatment ? does dad have a myeloma specialist or just heamotology consultant ? and were are you based ?? I live the north east  so my care is divided between my local hospital and my stem cell transplants were in the fantastic Freeman hospital  and professor jackson . annlynne

[jeff605Participant]

Difficult to find information on hospital rankings I found. I attend the Leicester Royal Infirmary, and have found the oncology team there fine. There are a number of consultants and you don’t always see the same one ( I believe you can ask to see the same one, but  I have just seen whichever one I am asigned to) They have always treated me with respect, and listen to what I have to say. They have answered any questions fully, although you do have to ask for information. Certainly, in my case the treatment has worked, I am in remission without having had a SCT. You don’t say where you are based, so I don’t know if this is any help. Good luck with your search, must be horrible not to have faith in your consultants. I e

[adewParticipant]

Thank you for your responses. My Dad has a consultant Haematologist in Bournemouth. The closer to the  south coast the better but we are willing to travel. We feel we are not getting the appropriate treatment and they will not listen to our concerns. He is being admitted to hospital monthly for various issues caused by Myeloma and nothing is being done. It has got to the point that his Renal Doctor is actually giving us more information on what is going on (he has to have dialysis). We have been failed since before his diagnosis and now we at least want a second opinion and wanted to hear of peoples experiences.

[tmcintyreParticipant]

I can recommend Southampton General Hospital.  Dr Jenner and his team are always ready to listen and address any concerns we have.  Any problems my husband has had with his treatment has been dealt with immediately to ensure that he hasn’t had to cope with side effects unnecessarily.  He is keen to access the best drugs for his patients.  The only gripe with have is the long waiting times in clinic – but I guess that is down to the fact that the team are prepared to give you the time you need to talk things through. Here is a quote from the hospitals website.

Dr Jenner has conducted clinical research into the optimal treatment strategies for myeloma and in to the prognostic significance of cytogenetic abnormalities in myeloma. He has also participated in the development of BCSH and NICE myeloma guidelines.

All the best

Teresa

 

 

[susieParticipant]

Have you tried talking to your GP about your concerns. They might refer your dad for a second opinion.

I know how you feel though. I used to have a brilliant consultant who saw me threw MGUS then when it became active myeloma. I had absolute confidence in him. Sadly he retired at the beginning of this year. I am now in first relapse and am on treatment but each clinic is with a different registrar, some senior some junior. There is no continuity and I hate not knowing who I am going to see or if they know what they’re talking about. Actually the chemo nurses give me more confidence than the doctors. They haven’t yet been unable to answer a question. Brilliant girls.

I hope you get a referral. It’s those how shout that get things in the NHS of today, so good luck.

Best wishes

susie

[adewParticipant]

Thank you. We are booking an appointment today with the GP to be referred for a second opinion. We will try Southampton as it is closer and I have only seen good things about Dr Jenner and his team. It is good to hear someone who has had first hand experience with them and are happy with their treatment. Sorry to hear of your experience Susie, it is horrible to feel so helpless and having to rely on people you have no faith in. It is absolutely true about those who loudest get heard.

[adriwest1Participant]

Hi, I am currently in Southampton Gen and they are tops- day 4 on my SCT. 

Dr J is in my option is the best!

 

[louishenryParticipant]

Southampton is very good. I was diagnosed at St Mary’s on the Isle of Wight but I signed up for a clinical trial which meant all my treatment was and is at Southampton. It’s well worth the journey.

[stephParticipant]

I have been at Southampton with originally Dr Smith ( who retired a few years ago) and now Dr Jenner for last 8 years. I’ve had one sct in Nov 09 and was in remission for 4 years. Although myeloma has returned I am included in any decisions made about what or when to restart treatment.

I have great faith in the hospital and the team. I would love to move to a bungalow but only if I can remain close enough to hospital for my regular visits.

Stephanie

[tmcintyreParticipant]

adew,

 

Have you managed to get a second opinion?

 

Teresa

[ebridges93Participant]

Hi

I was diagonosed in May this year following a very bad pelvis and hip fracture. I am under the heamatology team at the Queen Elizabeth Hospital Birmingham. Can’t fault the team I am under. They have really helped me through this strange journey I find myself on.

EmmaJ

[Author]

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