Changing my consultant - advice please

I know that this isn’t actually a breast cancer question, but wondered whether anyone has changed their consultant because they weren’t happy with the care given.

Background is that I badly broke my knee/lower leg in December (schatzker 6 tibial plateau and shaft fracture) which required an op for a hybrid external fixator to be fitted. This was removed after 15 weeks (should have been 12 but reg told me bone wasn’t healing and left on for a further 3 weeks). On removal of the metal work it turned out that my increasingly worsening pain was caused by septic arthritis and osteomyelitis. I had developed a deep knee infection which turned out to be MRSA. I spent over 3 weeks in isolation on strong IV antibiotics until I’d been fitted with a Hickman line and taught how to self administer IV antibiotics at home. Administered IV’s at home for a couple of weeks until Hickman line fell out whilst brushing my teeth so back to hospital via A&E. Lost in the hospital for a couple of days with veins in feet packing up on a regular basis (I have lymphoedema in both arms) until the Infectious diseases doctor was finally told I was there. Meds changed to oral antibiotics and discharged. I’ve been on crutches and oral antibiotics ever since.

Obviously for most of this I cannot blame my surgeon. However I do have a complaint over his actual care including surgical competence, his inability to fully inform me and apparent disinterest in my wellbeing generally.

I know this sounds a little paranoid but because of the excellent ID doctor I have become aware of a non alignment of the tibia bone which I was never informed about. I can see that she is not in the least bit happy with my treatment and care from him and was obviously cross when after the first appointment after the infection I was yet again palmed off with the registrar (after the consultant briefly looked at me and sent me off for an X-ray) . I only saw him once during my 3 1/2 week MRSA stay (nurses told me I should have been visited everyday!).

I realise that I could actually go on forever with reasons for wanting to change and so will stop there. Due to the ID’s docs interest and a letter to the surgeon requesting an MRI, I did see the surgeon the next time and have had an MRI to check for continuing infection and also to see the state my ligaments and knee is in .

I already knew that I would probably need at least one further operation at some point (knee replacement, ligament repair and forcing my to knee bend ops have all vaguely been talked about) and wanted to change to another specialist knee surgeon before then (one of the best actually works in the same hospital). I have an appointment booked with my GP tomorrow for this very purpose and my ortho appointment is on Thurs.

This Friday I was told by the ID doctor that the MRI shows low level infection that will never be sorted out by antibiotics alone and will require an operation specifically to try to remove infected and potential hidden sources. So it looks like I don’t have as much time as I was hoping to get a surgeon I trust before going under the knife again.

Whew! Anyway my question is has anyone changed their consultant and how did you go about it. I am a little worried about being perceived as an overdemanding trouble making patient and know that taking over a badly treated MRSA customer is not exactly top of any consultant’s wish list.

Thanks
Roberta

PS. For those that don’t know me, I haven’t escaped from a broken leg or MRSA forum as I was dx with bc almost 3 years ago and really quite experienced with the ups and downs of bc treatments and hospitals.

Hi Roberta - yes, I do remember you, as I was dx in 2003 and have been a member here since.

I changed my Consultant Oncologist after our 2nd consultation. I was referred to him by my excellent bc surgeon, as I was a “difficult case”, also having chronic Crohn’s disease and concidentially, waiting for a colonoscopy. My surgeon thought Dr. K was the best Onc for me. Turned out an unmitigated disaster, and I almost didn’t go through with chemo because of him.

Our problem was either a clash of personalitites, or as I saw it, an arrogant and patronising doctor who would not admit that he was quite intellectually unable to deal with the two concurrent diseases. My gastro (with whom I have an excellent relationship) said he could not intervene in my treatment, as bc was life threatening and Crohn’s isn’t - which I beg to differ with. I was taking methotrexate weekly for Crohn’s and Dr. K. said I had to stop it immediately otherwise I would die of septicaemia when I started FEC. Just what I wanted to hear when in such a vulnerable position. I was in tears both times I saw Dr. K and my husband was very embarrassed - I was hopping mad!

When I went for my 1st FEC, knowing one had to see the Onc before the infusion, I told the receptionist in the Onc suite I did not wish to see Dr. K, but I would see anyone else. I was told to wait in the reception area, and then I was called to a private room where a lovely young female GP (who did one morning a week in the Onc suite) saw me. No questions were asked, there was no fuss, and I believe Dr. H saved my life. She put me on a small daily dose of dexamethasone throughout the FEC (4 months) and got me hospital prescribed Frutijuice to drink (3 cartons a day= 900 calories) as I was totally faecally incontinent. Even so, I lost some 28 lbs in that time.

My situation was entirely diferrent to yours, as I was treated on the National Health Service in England, where we do not usually have a choice of specialist Consultants. In the past I have changed my Consultant Gastroeneterologist twice, having gone through my GP. Again, there were no questions asked and it was done quite quickly.

I believe you live in the USA and I was not aware that you have MRSA problems, as we do here. This is as life threatening as cancer, and if I were you, would see my GP or PCP and ask for a referral to a different orthopaedic consultant.

Good luck.
love,
Liz.

Hi Lizzie, no I haven’t forgotten you either and thanks for your reply

I thought that I’d better put you straight in that I’m a brit (live in London) and being treated on the NHS. My bc is being treated at a different hospital to the broken leg/MRSA (I like to spread myself between the 2 hospitals to ensure that my munchausen’s goes undetected).

The orthopaedic surgeon I am hoping to be transfered to works in the same dept/hospital as my existing consultant but is in fact also a specialist in knees (also works in a knee clinic at a private hospital). I’m not sure whether this is an advantage or a disadvantage. It may be that my surgeon realises that he’s now a bit out of his depth (given as you point out the dangers of surgery on ongoing infections, let alone MRSA) and may suggest that I be transfered anyway.

Luckily I have a good GP and I will ask her what she feels is the best route.

Hi Roberta - you did make me laugh about Munchausen’s (and not even by proxy!) I would love to read my notes on the 37 yrs I have had Crohn’s, but would probably be horrified. I think by now, I can feel the vibes of a Consultant I have either no empathy with because they still think they are God, or they don’t know as much as I do about Crohn’s. It was a surprise, if not indeed shock, to have this arrogant bc Onc not even be able to discuss what he would do if I had a flare of my Crohn’s when on FEC. His attitude was: “We’ll cross that bridge when we come to it”. Well, he hasn’t walked that bridge like I have many times, with severe rectal haemorhhages and having blood transfusions. When I asked if he had treated a patient with bc and Crohn’s he replied: “No, but I have treated a patient with bc and psoriasis”. I have psoriasis too, but this is not even comparing apples with pears. That’s when I knew I was in trouble.

I delayed my chemo for a month whilst I wrote to every major hospital in the USA - MD Anderson, Mayo, Cleveland Clinic etc. as well as Christies in Manchester and the Royal Marsden,even the IBD hospital St. Marks at Harrow, and they all responded but said they had never dealt with a patient with concurrent bc and Crohn’s. I felt in an absolute wilderness. The only person I have ever had contact with who had Crohn’s and cancer, via the Crohn’s and Colitis forum in the USA (she went on to get pancreatic cancer and she has sadly died this last February at 39 yrs) was a Scottish lady, living in San Francisco. We both felt we were the only two people in the world we could discuss our joint diseases with. Quite pathetic really.I still so sorely miss her weekly e-mails, but hope I can keep in contact with her two teenagers.

I don’t think transferring to another orthopaedic consultant within the same hospital should present a problem. I am on my 3rd gastro at my hospital (Derriford in Plymouth) and am blessed that he is young, on his 1st consultancy post, and he is absolutely brilliant. He worked in a leper colony in Africa, then with Aids patients at St. George’s in London, before deciding gastroenterology was the most exciting field in medicine to be in. Can’t quite get that one! My first one here in Plymouth was very arrogant and hated being challenged with questions, new medications etc. - indeed, I found methotrexate for Crohn’s on the internet some 6 yrs ago, and it is still not licensed in England, because the mnfrs feel it is not worth the money with so few patients. It can be prescribed off license though by a Consultant. Luckily I got my GP to transfer me to the only other gastro there - he was okay, but his speciality was stomach cancer, and he really knew very little about Crohn’s. We had a new female GP at my local surgery who also had Crohn’s and just the week before I was dx with bc, she suggested I change to her Consultant, that she had worked with as a locum before coming as a GP to my surgery - my present gastro… I have no criticism of him whatever. He does blind me with science at times though. But I prefer that, to being dismissed as a hypochondriac, which I definitely am not.

My perception is that not all Consultants know everything about their particular speciality, as evidenced by my experience. I was very lucky some 25 yrs ago to be referred to the Hammersmith Hospital in London, even though I then lived in Northamptonshire. I had the best 10 years of my life as I was monitored monthly by a brilliant gastro who did no private work. He spent 1/3rd of his time as a lecturer in the Royal Postgrad Medical School, a 1/3rd of his time researching for the Medical Research Council, and the latter 1/3rd with clinical patients like me that had “empirical problems”. He decamped to New Zealand to work in research for the Wellcome Foundation, I retired to Spain. I never, in 10 years there, had to see a registrar. I still won’t see a registrar - indeed 2 weeks ago I had my 3 monthly check up/review with my gastro (big problems with my bone marrow blood tests) and I had to wait some 2 hours. The out-patient nurse apologised for the delay and asked if I would like to see a registar - no thanks - I don’t want to spend a half hour telling him of my complicated history, and if he is on the normal 6 months secondment in different specialities, what can he tell me that I don’t already know? My current consultant gastro cares passionately about IBD, and is always there at the local Crohn’s/colitis Assocn meeting to answer any questions.

I truly think that you are not at all comfortable with your current Ortho surgeon, and hope your GP can refer you to the surgeon you want. I have never known any of my Crohn’s or bc doctors say they will refer me to another consultant - they have too much ego, I believe.

Apologies for confusing you with an American - can’t seem to access the profiles these days.

Go for the best…and hope you get good care.

Love, Liz.

Well as it turns out I didn’t have to tackle the problem after all. I saw my GP who advised me to ask the ortho for a second opinion anyway.

Saw the ortho today (at 6.50pm after the slighly less than the standard 3 hour wait). First the reg turned up (new one of course) and effectively broke the not such good news which I sort of knew but didn’t want to take in because I simply hate being crippled. Consultant then saw me as well and he’s not unkind, just didn’t do a good job with me. Anyway without me asking he is refering me to a specialist (a Prof at RNOH Stanmore ) who is an expert in bone non unions with infections, so I’m getting the right person for the job. In theory I’m still under the old consultant as well, so it seems I have yet another consultant to add to my portfolio. I just hope this new one has the time to deal with my case properly…so very very tired of hospitals.

Thanks for the fasinating insight into your dealings with consultants and your support.

Love Roberta

PS. The lack of profiles is really annoying (also the ability to read the person’s previous posts as well).

Dear Roberta

Very sorry to hear of all your problems with MRSA. My god, it’s dangerous going into hospital these days. Those days of giving out antibiotics willy nilly and bad hygeine in hospitals following Mrs Thatcher’s privatisation of cleaning have really come home to roost and we are the unhappy recipients. Especially in London judging from the recent reports from Darzi (hope I’ve got his name right)

anyway I hope your new consultant can do something and sort out your infection once and for all.

Good luck

Mole

I wasn’t happy with my consultant after in response to me saying that I had some questions (after having my diagnosis confirmed) he told me “to hurry up as he had other people waiting”. He also played with his dictaphone and left the room before I had finished talking to him. I spoke to my BC nurse shortly after who arranged for me to see the other consultant at the hospital. I later went through the hospital complaints procedure and independent review.

Hope this helps.

Adele

Hi Mole,

Yes dangerous places hospitals and the name’s right. I think that sometimes the hospitals actually cause the MRSA not just spread it around. When I have been on IV antibiotics there has been more than one occasion that a dose would have been missed if I hadn’t spoken up and brought it to their attention. Actually missed out on 3 doses during the recent stays despite me being vigilent and vocal. The last thing I need is to mutate the MRSA into further resistance!

Hi Adele,

That’s an absolutley disgusting way to be treated. I’m glad you had him changed so quickly and that you followed it through to a complaint. Hope you are happy with the new consultant and that he’s treating you well.

Not sure where you are in the bc life, but good luck whatever.

Roberta
xx