[jeff605Participant]

I keep seeing reference to “Centres of Excellence”, dissatisfaction with treatment, people not happy with their relationship with their consultants, people who have moved hospitals, and the like. I should like to know how one finds out which are the good and not so good hospitals, at the moment I’m not too unhappy with my treatment ( in partial remission, quite what this means for the future not too sure, I will be following AV8R’s topic with interest ),my main concern being having to more or less drag detailed information from the consultants. In fairness this is a very busy clinic, usually running 1 1/2 to 2 hours behind appointment times, with some very poorly patients. So, is there some magic list or website somewhere, I have spent some time on the web looking with no results. I don’t intend dashing off to another hospital, but would like to know where mine – it’s in Leicestershire – is in the ratings, if these exist.
Meanwhile, feeling quite good in myself, but cursing my back pain which has now been compounded by Sciatica in my right leg, together these are preventing me doing much – I know there are others a lot worse of than me, but it is so frustrating, may have to stop driving due to increase of morphine dose, and can’t even get away for a short break
When I was smouldering I stopped using/reading the forum, as I found it depressing, but since becoming active, I find it very useful reading other’s experiences and advice, so please keep it up, all of you. Best wishes and regards to you all Jeff605

[duskParticipant]

Hi Jeff605

When I first posted on this site I raised some areas of controversy which did not go down well,  it was even suggested I was not a real MM person (I wish).

Like you I too have noted that posters who regularly post seem to be more content and positive with their assessments, treatment and doctors.  That is great for them and is to be lauded- trust is important for this disease.  But I wonder if people like me, now reluctant to post, are asking the same as you here.

MM has only in the last decade or so had treatments that give promise  with improved outcomes/  survival. I think the truth is that consultants / centres may sometimes come from different perspectives on treatment on what is an ongoing learning curve still for some.  That is why being informed, from reading and understanding ones own particular health  situation, seems to me vital when asking questions or discussing treatment with  the consultant. The difficulty is getting enough relevant information for essentially a disease with a multi-disciplinary perspective., when only one aspect is covered

I think of  centres of excellence as those hospitals with the modern techniques of detection /assessment of MM and who are involved in clinical trials at least, with myeloma specialising haemologists as the oncologists taking the lead. Thye also would have true multi-disciplinary teams or contacts.  Maybe Myeloma UK could list these places, but I do not think it would be allowed to do this.

 

 

• This reply was modified 10 years, 9 months ago by  dusk.

[dickbParticipant]

Hi Dusk,

I read your original thread and please don’t think people are gunning for you. Reading through the posts I would suggest that people were a little unsure as to what you were saying and when some have had very stresfull times either as a carer or as a sufferer then they possibly felt you were being a bit too negative. Anyway, that is in the past, please keep posting because I am sure you can contribute to the Forum.

Jeff, I can’t pass comment on UK hospitals because I live and am being treated in Germany. There are similiarities in that you have the right to a second opinion and that some places are definately better than others. A note of warning though. There are 2 centres of excellence near me. One is the University clinic, Mannheim the other is in Heidleberg. Heidleberg has the better reputation but because of this everyone wanted treating there. They are now overloaded with patients and consequently those in our self help group have said that the quality of care has gone down. So be careful of reputations, they are effectively out of date!

Richard

[tonyfParticipant]

Hi Jeff.
Are you having a tough time with the Leicester Royal infirmary? That’s a great shame because I have nothing but praise for the place. I was at the clinic last Thursday for my three monthly check up. The system has recently changed, I am on the myeloma X1 trial, been through SCT, opted for no maintenance drugs. As I am on the trial I reported in to reception and was sent up to the top floor to a new unit, specifically for trials patients, was attended to immediately, in and out within the hour!
If your hospital is the LRI have you spoken to anyone of your worries?
You can email me privately if you wish.
Regards
Tony F

[jeff605Participant]

Hi Tony, thanks for the interest. No, I don’t feel I have had or am having a rough time from the LRI I was also on the X1 trial, was taken off it at the same time I was taken off Chemotherapy, once more with no real reason given. I don’t feel I have any major problems with LRI, the X1 team have provided excellent support, both “day to day” and on the occasions I have needed extra help and advice. The day ward staff always do their best to provide a quick sympathetic service, with help to provide mutually convenient appointments, etc.As I’ve said I’ve not seen the new ward, etc yet. Looking back over my posts I’ve realised my main concern has been lack of feedback from consultants, perhaps I just want to know too much,or need to ask more questions, so perhaps the fault is mine.Jeff605

[andygParticipant]

Hi Jeff.
From my time on this forum the question of the best hospitals for treatment does come up occasionally. I know Dia moved from Wales to Nottingham because he felt it was in his best interests to do so. The major problem is for people who don’t live near a “big” hospital they get seen at their local hospital but they may not have a “big” haematology unit or doctors with only a little experience of myeloma. Because of this they nay get shuffled between hospitals, the local one for bloods, drugs and routine stuff, but may have to travel to the bigger hospital for the big stuff, SCT, MRI’s etc. This is not ideal though it is a common situation.
Myself live near a hospital a largish one and most of my treatment has been there. Though I’ve had treatment at a hospital 6 miles away, not a great distance I know, I’ve also been referred to a hospital 40 miles away and it’s also been suggested I have treatment on a trial at a hospital 130 miles away. Although the travelling would be horrendous this gives me confidence my team is working and doing the best for me. Others may see it as a lack of confidence in their team and begin to question whether they’re getting the best treatment.
At the end of the day nearly everyone’s opinion will be different. But you do need confidence in YOUR team/hospital and if you’re not comfortable it is possible to have second oppionions and ultimately change hospitals. Or as in Dai’s case move to be nearer a hospital you feel will serve you better. It’s your health and we only get one shot at this life it’s up to the individual if they’re unhappy to do something about it.
Energy then can be much better spent on fighting to stay alive.
As with most medical problems there’s no one cap fits all with Myeloma. Drugs that work for one don’t work for others. SCT gives long remissions to some to others hardly any remission at all. If you looked at my history of Myeloma and assumed I was typical of patients at my hospital you wouldn’t touch the hospital or my consultant with a barge pole. Yet I see patients there who have had sct’s and been off drugs for 10 years.

Dusk
Myeloma is very easy to detect a simple blood test is all it takes. Getting GP’s to recognize Myeloma is difficult mine didn’t recognize it at all. A GP on average will come across one myeloma patient in their working life. So it’s never at the forefront when they are diagnosing patients. MyelomaUK have started to run myeloma awareness campaigns for GP’s so hopefully quicker diagnosis will happen.
Haematology and oncology are two totally different fields of medicine. Haematology consultants do sometimes have meyloma as a special interest though they have a wide range of haematological conditions to deal with. Hence hospitals only dealing with myeloma on one day a week because though very real to us it is a rare condition.

Oops I’m starting to write too much again! Can’t even blame Dex tonight. I’d better get some sleep big day in the day case unit for me Monday!

Every day is a gift.
Don’t waste it.

Andy xx

[andygParticipant]

Oh I think most patients with Myeloma have a multi disciplinary team working for them – I know I have. From my specialist nurse up to a Professor at another hospital. I’ve seen them all at one time or another too!

Andy.

[eveParticipant]

Hi Everyone

As some one who is a carer to my husband,and over a period of 3 years,and going to are local hospital 15 miles plus Kings in London 86 miles,now Royal Marsden in Sutton just on 100 miles,double with return journey I know a fair bit about it.

As Ellen says unless you are on Trials treatment by NICE is adhered too.
If your local hospital do not have trials you can travel any were for them.

Everyone has to consider there own personal circumstances,when making decisions about treatment,I have learnt everything I can,about Myeloma and I am still learning!!!!
I cannot say we had a good relationship with Slims first consultant!!,he was not great at explaining things medical jargon,and plain English are entirely different,but after 3 years,I would like to think,we respected each other and had more understanding of each other’s views.
And yes he did get exasperated with me asking different things.i do think he has given us the best treatment available to him.
So please remember treatment is standed unless on trials and trial procedures have a format and have to be followed.Eve

[duskParticipant]

Dear AndyG and fellow MM journey forum members

Please do not assume I lack detailed knowledge or understanding of myeloma (or clinical issues). It is not helping me to feel confident about joining the forum and perhaps I will now decline to post after today.

Not all people who look at the site or even contribute will be laymen in regards to what might be the best course of treatment for them personally, some will come for hope / re-assurance because they need this in an uncertain field. We all have different reasons for looking at the site, let alone posting on it.

Dear Jeff605

I fully understand where you are coming from. Please never think wanting to ask more questions of your myeloma team or seeking answers (even if not exactly given clearly) from your consultants somehow makes you the problem.  I feel angry that you should be made to feel like this- this is the one shot at life we will have and we have a right to probe and understand and be fully involved.

Please seek the answers- write down your questions and e-mail them to the consultant /  team nurse if need be.  When you meet at clinic ask again if you have not had a reply earlier. The NHS may be over loaded but I have my own view from experience which suggests things could be much better for all patients than sometimes is experienced by those using it.

 

[PhilipandfionaParticipant]

Hi Everyone

It is my husbadn who suffers the MM not me, I’m just here for the ride!!! We see 2 consultants in 2 hospitals – the Royal Sussex County Hospital and the Royal Marsden. We are happy that we see them both, get them to talk to each other and to us, and formulate a plan of action.

I am absolutely with Dusk, Eve and everyone else here who has said that it’s very important to speak up for yourself to the doctors – no matter how hard it may be, and how difficult it feels to see beyond the white coat.

I am sure our doctors think of me as possibly a pain, but I am the one who wants to know things, and to formulate a plan, and to get things moving, and to know what is what, and I am the one who tells them how my husband is feeling, when perhaps he is more reticent! I’m not a complete she-devil I promise, but my inner mother bear comes out quite frequently when it comes to my family.

I am sorry Dusk that you are still not comfortable here. I beleive you are relatively new to the forum, adn I think you make a valuable contribution to the board. I certainly would not think you lack detailed knowledge of myeloma, but we all lack detailed knowledge of each other’s positions, thoughts, feelings and disease, that’s one of the “beauties” of MM that every one is different. I think everyone here tries to write from the personal, and if anyone takes comfort, or use from that, that is great. I don’t think people try to extrapolate further than that unless specifically asked.

You seem very forthright, and that is great. However, in type, it is difficult to guage tone, or get visual clues, so sometimes posts which are meant one way can be read as hectoring, or trying to impose our own views on the group as a whole. My husband is always telling me to pick up the phone can call people instead of emailing or texting, as written correspondence can so quickly and easily degenerate into arguments (ususally with my sister!)

I wonder whether in sharing your personal experience and expressing your dissatisfaction in the way you have, it comes accross as a general criticism of the NHS which is contrary to the experience most, but not all, have had.

As sufferers, or as carers, we need to feel confidence in our doctors, and, in the fact that they care deeply for their patients. We perhaps need to protect that relationship as the MM journey is hopefully a long one, and we need to feel they are by our sides the whole way.

By all means, rant about inadequacies, publicise failings, and the whole group will rally to your cause. But please, please note that we are all here to help each other, and emotions can be quite fragile here, and we need to all be gentle with each other. Those who have been here a long time are a wonderful wonderful source of information, comfort and hope, and I dearly hope you will stay around to share in that.

I can’t speak for anyone else, but I’d like you to stay, and hope you feel you can.

fiona

[AV8RParticipant]

Hi Jeff

Last year I attended the Infoday at Cardiff. I was most surprised to hear about the varying standards that patients seem to encounter.

As I’ve mentioned elsewhere on the forum, I rate Bristol very highly. Yes things do occasionally go awry such as my notes not arriving in time for my Zometa treatment but the staff are apologetic and soon get things sorted.

Seemingly unlike some patients, I do have a 24 hour emergency number I can phone for guidance. I can also self-refer to the haematology unit should the need arise. I heard of one hospital which provides SCT but does not provide an en suite toilet and shower. Surely part of the treatment is the need to keep as hygienic as possible whilst maintaining some degree of dignity.

I’ve clearly been more fortunate than some. All the doctors, at every level, have been friendly, professional, willing to listen and to answer my questions. The nurses have been truly caring. They always check how I am and whether I need anything. They try very hard.

I do, however, occasionally meet patients who are angry. Could it be that their mood results from fear? I think we’ve all been there.

I recently came across the British Committee for Standards in Haematology. As their name suggests, they develop guidelines for the treatment of haematology diseases. Their website is at http://www.bcshguidelines.com. If you’re in the mood to read the 99 page guidelines for myeloma (written with a target audience of profesionals) you will find it at:

http://www.bcshguidelines.com/documents/MYELOMA_GUIDELINE_updated_29_aug_RG_jzw_(3).pdf

Keep well everyone

Stephen

• This reply was modified 10 years, 9 months ago by  AV8R.

[duskParticipant]

Dear Stephen

I would feel unhappy that forum members should ascribe anger in some patients as due to fear. I am angry- but have no fear of the disease (even for BMB the doctor was amazed I did not move/ flinch at all when she went in twice having not got the sample first time- save from muttering ‘bloody hell’ ) or what it means for life expectancy. My response to the diagnosis was not negative but entirely practical and remains thus.

But I remain angry at the way assessments have been undertaken and the way treatment is being viewed / presented. I also am angry that myeloma suffers are said to have options in terms of treatment choices when in reality this is a lie because of NHS funding restrictions. The purpose of a nationally funded NHS is now in question and the 2o+ year life with myeloma have I noted only been reported from th odd US patients. So perhaps I am more questioning as to why?

I note you said some patients lacked 24 hour contact number, maybe their experiences are additionally less positive than yours in general and that the anger stems from feeling this. I have not found the doctors in the same unit to be necessarily alike in their consultations with me.

Dusk

 

 

[andygParticipant]

Dear Dusk.
Unfortunately we don’t know anything about you. Your experience of medical matters, your age, where your being treated, your history leading up to diagnosis etc etc.
So giving advise or support tailored to you is difficult. So I guess some assumptions will be made.
I wouldn’t belittle any point of view you have. I may not agree with something you may say but with the lack of even a little knowledge of your journey to date I will only relate to my journey and that of others on the forum that I am more knowledgeable of.
I was diagnosed after 18 months of back pain and been sent to Physio after Physio till a couple of X-rays and a blood test confirmed Myeloma. Well actually I think it was the BMB that was the definite confirmation.
My BMB was very easy too – though in my case that was because my bone were very soft due to the myeloma. When the results were ready I had a meeting with my consultant and specialist nurse and was told the route I would take to a hopefully long remission. At this time I was only armed with what I’d read online and in leaflets. It seemed very straight forward CDT for around six cycles and then a SCT followed hopefully by a long remission before the inevitable relapse. My wife and took as much of it in as we could and I signed on the dotted line.
Anyway CDT didn’t work for me so we discussed the next step. I knew a little more by now so with my consultant we discussed the next options and we decided on trying PAD which didn’t work either. Fortunately I didn’t get PN as a side effect.
When discussing my next line of treatment my consultant mentioned a treatment that wasn’t used at the hospital but had been used at the one where she had worked previously it was a harsh regime meaning. After some thought my wife and I agreed to give it a go. A 4 day stay in hospital with a multitude of infusions at the same time. Very hard to sleep I can tell you every time I moved I’d set a bleeper off. The treatment was call DTPace unfortunately that just wiped out my bone marrow and left some Myeloma cells. As another BMB confirmed.
I was then passed on to Prof Jackson, a national expert on Myeloma for a second opinion if you like. He ruled out an auto SCT due to my bone marrow been too battered to be able to produce enough stem cells and suggested we look into having an Allo SCT. He did say in my case it was a matter of urgency. Anyway after bloods tests only one match was found and further tests proved he wasn’t a good match. After much discussion about quality of life and the risks involved we didn’t go ahead with the Allo.
I was then started on Revlimid not a standard treatment at the time.i managed 22 cycles before it started to fail me. All the time I was on Revlimid I was never in remission the best I achieved was stable.
Now I’m just starting out on Pomalidomide hoping that will get me back to being stable again.
All my treatments post CDT have been fully discussed with my consultant and I’d like to think we came to a joint decision.
I only ever see one doctor/consultant for my treatment unless I’m referred to others for specialist treatment radiotherapy etc. I do see other doctors/consultants in the day unit when I’m in for something unscheduled ie infections etc when my consultant is away but at my regular appointments it’s alway the same doc.
I have 24/7 access to the haematology department and have used it several times and been admitted to the hospital that way. No waiting for a GP or going through A&E because time is crucial. The longest it’s taken is 90 mins from home to hospital bed an the initial assessment. I used this service again a couple of weeks ago, unfortunately, can’t be too careful with infections and I had a 4 night stay. This was at night if I gave a problem during the week in office hours I go straight to the day case unit as instructed they can be very bossy.
I don’t go to my GP for any health problems it’s always to the hospital first because they have impressed upon me the need for speed in treatment.
That briefly is my journey so far with myeloma. The medics are doing their best. I think I’m getting good care. I know my days are numbered it did cross my mind the other week that my time was up! But the antibiotics did the job. I’m not angry about having myeloma or not being able to have the latest drugs that are available else where. I’m not even angry about the delay in diagnosis because the way I see it I am where I am and being angry over what ifs to need is a waste of energy and time. So I’ve accept my past, I can’t change it, and I try not to worry about the future, it’ll always be what it’ll be. I just try and live each day the best I can because that’s where I am.
Please don’t think that I’m having a go at you for being angry because I’m not everyone has a different way of dealing with things. I would suggest as probably already been pointed out that at every consult you take a list of questions or concerns with you a note the answers given. Some take digital recorders with them so they can review the whole consult in their own time. You say you have knowledge of clinical issues well knowledge is king. Use it and if you don’t like how you are being treated you can alway get a second opinion as you will be aware though I suppose the same NICE protocols may be in place. You need to have faith in your team because it’s your life and you need to feel they’re on your side.
Please don’t give up on the forum because it is a great place to come for a good old moan you will find nearly everyone will try and be helpful. Though if we knew more about your journey it would be helpful. Not personal stuff just how you were first aware and the journey to where you are now. Your thoughts on the nhs are just as valid, maybe more valid, as anyone else on here but we are all different with different views on how it should be run.

Anyway that’s enough from me for now. Can you tell I’m on my Dex today?

Every day is a gift.
Live it to the max.

Andy

[graham-cParticipant]

I too have had the problem of getting blood test results out of LRI. I now make Subject Access Requests, which are quite simple to perform, and the hospital has to provide the results as my legal right. It’s a shame that I have to do this but it’s inevitable.

I’ve made a Subject Access Request in respect of my January tests and, though I should get them by mid-March, I expect that they won’t comply, in which case they’re breaking the law and I can leave their regulatory bodies to wring the information out of them. It’s much easier if they provide results in the first instance but they’re slow learners.

I’ll let you know how I progress.

• This reply was modified 10 years, 9 months ago by  graham-c.

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