[daisychainParticipant]

Hi all

Just a thought. I tend to read through the American blogs, where patients/careers/family members tend to name the hospital and consultant they are with and their treatment protocols/consultant attitude to treating mm. Maybe I’m just being nosey but I find this info really insightful and helps with my expectations. I’m at the royal Marsden dr Martin kaiser

I tend to miss this info on the posts here and wondered Maybe our profiles could be used for this information?

best wishes to all
Dawn

[duskParticipant]

Hi Dawn

I do not know how USA works, but here although one might be under a consultant they ususally in teaching hopitals operate as part of a larger team  and it is my experience that you do not always get to see the same person. Do you find you see the same doctor at follow up appointments or with treatment decisions? That is something that should interest us. Because often patients are discussed in a team with consultant present but the may then be seen by another team member.

I suppose it depends on the hospital and number of myeloma patients dealt with.

Dusk

 

[daisychainParticipant]

Hi dusk

Thanks for your response, I do know what you mean as until recently I was cared fOR under NHS. I did keep with the same consultant at my district hospital in Basingstoke, Dr Roy and Dr Sargant.

However, 3 years ago I went for 2nd opinion at the Marsden and went private (policy through my work) as this guaranteed seeing prof Gareth Morgan.

Disadvantage being private I don’t have access to clinical trials. Policy at Marsden is you have to stay NHS or private and can’t swap between both.

Regards

Dawn

[jeff605Participant]

Interesting, at the Leics Royal , it’s very much a team of consultants who obviously discuss us at team meetings, they get to know us and our problems over time, there appears to be about 5 – 6 consultants and it seems to be pot luck which one you get. No serious complaints about this, I do have favourites among the team. The clinic runs so far behind time I never do anything that will further delay things, such as asking for a specific consultant. Where it does fall down in my opinion is if you happen to be seen by a registrar, they don’t seem to have the background knowledge of us, and whats going on, although this only seems to happen when things are going well. I shall ask not to be seen by one at the next clinic Jeff

[daisychainParticipant]

Hi Jeffery

The way you’ve explained Leics Hosp, The Marsden Sutton runs exactly the same, including running behind time !!!

What about access to clinical trials it that only available if you are a NHS patient?

Best wishes

Dawn

[tonyfParticipant]

Hi Dawn, I too attend the Leicester Royal, unlike Jeffrey I am on the myeloma XI drugs trial via the NHS. There is a special clinic for those on drugs trials, financed I think by a charity called Hope for Cancer ( Leicester based I believe ) I see the same consultants as Jeffrey, and like him I also have my favourites! Don’t think I ever seen a registrar. He is right about the consultants meeting and discussing patients whether or not they are on trials everyone is treated in the same way.
Regards
Tony F

[jeff605Participant]

Hi, Dawn and Tony, I was on the X1 trial at Leics as you are Tony, and attended the clinic upstairs which did run to time pretty well. I never saw a registrar here either. I was taken off it when I stopped responding to the trial Chemotherapy. The non -trial clinic is a very busy clinic with some patients requiring a lengthy consultation.
Dawn, can’t help with the NHS only access to trials, I would think that as some of the trials are run by non NHS funded sources as I understand it, ( might have misunderstood this ) it would be worth pursuing if you are interested in accessing one, although you do say it’s not the Royal Marsden’s policy
Just gave up and decided to have a cup of tea and a read, it’s a Dex night !! Jeff

[Kazzam2Participant]

Hi Dawn, I too attend attend the LRI, and like Tony I attend the special clinic as like Tony I am on the trial. However, my latest visit (12 days ago), I had to go to the usual clinic, there was a 2 hours delay as there was a shortage of consultants, I was eventually seen (Dr Barton) two and a half hours later, and then I was sent upstairs for trial blood test etc.

It certainly runs better when I only go to the special clinic, hopefully it was only a blip. Maybe I should not say but my favourite consultant is in brackets further up.

How come you cannot see your medical records Dawn?

Hi Tony and Jeffrey.

Regards

Karen

• This reply was modified 10 years ago by  Kazzam2.

[daisychainParticipant]

Hi Karen, Tony and Jeffery

many thanks for sharing your experiences with me.

Karen, to clarify I am unable to access clinical trials unless I want to stop receiving private care services at the Marsden  as they don’t allow patients  to alternate between the 2.

So for example I am currently able to access Carfilzomide through private ins and the support I will get consultant, prescriptions,  etc will be costed to my private ins.

If however, there is a better drug suited to me on a clinical trial and my consultant thinks I should go on the trial. I would need to transfer over to being a NHS patient with no option to transfer back to private in the future!

All a bit confusing eh.

Best wishes

Dawn

[graham-cParticipant]

Just to mention that I’m at LRI too. I’m down as MGUS with unexceptional PP but out of range FLC and significantly so with an adverse kappa/lambda ratio. As long as I’m informed what my readings are I’m happy to not receive treatment. It seems that it will only begin if the figures show a significant ‘rate of climb’ and mine appear steady. As treatment is not likely to improve how I feel and others will be a priority I’m happy with the situation.

I had a lot of trouble getting my figures as I suspect that they don’t trust patients to be able to be rational though this improved at my last blood test.

To confuse maters I have recently ‘crocked’ my back and I’m on Tramadol, Diclofenac, muscle relaxants and heavens knows what. My usual GP is retiring and I had to see a new one which concerned me but I was impressed. She tried to get me seen at the fracture clinic because of the added risk factors but they refused and put the phone down on her. I’m not in a panic but I am in a lot of pain. Unsurprisingly on receipt of my GP’s letter LRI called me in today. Basically they want me on higher dosage pain killers.

It’s easy to jump to conclusions and I’m not making assumptions but, if it worsens, whatever it is I’ll been in hospital. I had an x-ray at Glenfield on Friday and it’ll take a week to get results so I’ll try and manage until they’re available.

[jeff605Participant]

Hi Graham, Hope your back isn’t what I have been suffering from for over a year, cancer damaged vertebra, it has been restricting but manageable using pain meds. I’m actually off for a vertobroplasty tomorrow, and have high hopes for an improvement in mobility, etc.and a reduction in pain meds.
You seem to be following a similar path to mine, I had similar results to yours, and was three and a half years before I started treatment
Regarding the lack of freely given information at LRI, I started a discussion on this very theme some time ago, as you seemed to have to prise information from the consultants. This does seem to have improved of late, the consultants seem happy to show the computer screen results and discuss them.
Best of luck with the back problem, and long may you smoulder, Jeff

[graham-cParticipant]

I forgot to mention Jeff that I had kidney cancer 7 years ago and lost one kidney to it, so my risk factors are high. I’m on 8 x 50mg Tramadol a day aside from a host of other tablets but the only difference it makes is perhaps to slightly increase my range of movement and reduce the background ache enabling me to sleep.

Hopefully the x-ray report will be available to my GP next week and I’ll visit again then. The physical checks that were performed I suspect indicated that there was’t a fracture as pressure on my spine didn’t hurt all. It’s movement in certain directions that provokes pain off the scale. I’m normally a very fast and purposeful walker and it’s very difficult being reduced to ‘fairy steps’.

I’m not being lackadaisical but if the hospital don’t address the problem I’ll inevitably end up in their care. It’s only willpower enabling me to walk. Any deterioration and I’ve had it.

[graham-cParticipant]

Just a follow up to my last post. My GP rang up the Fracture Clinic at LRI to get me seen by them, Presumably they said no and from her reaction they put the phone down on her. Her request was natural and sensible if not obligatory for someone with my background – cancer and MGUS.

Lo and behold on the following day I was telephoned at home and asked if I could get to the Fracture Clinic in an hour. Obviously I couldn’t as it would take that long to get to the bus stop, but I didn’t tell them that. The doctor observed that I was sitting awkwardly and suggested that this might be the cause of the pain. He was losing my confidence rapidly. All the time he appeared to be doing something else and it was difficult to know when he was actually speaking to me. I had taken my medicines in and he rambled off a list of what he thought I should be taking. Obviously I couldn’t follow what he was saying and I asked him to write it down. He didn’t like that and he gave me a squinty look but, as he was essentially criticising my GP I thought it a good idea to call his bluff.

He seemed obsessed with Diclofenac and I confirmed that I had taken it previously and then he left and I was moved to the waiting room as the nurse handed me a packet of Naproxen. When he returned after an hour he said that I looked better already which was puzzling and I pointed out that i hadn’t taken the pills as he hadn’t asked me to and I couldn’t read the dosage without my glasses.

I’ve only just discovered today that it’s a drug that my GP had already prescribed, though the packaging differs, so I have been double-dosing myself. He didn’t arrange an x-ray himself and I don’t know whether or not he’s have access to the x-rays taken at another hospital the day before. if he didn’t have access to those x-rays the appointment was essentially a disaster based on fundamental medical errors.

The x-ray report should be available to my GP next week and Im keen to know what it reveals. All I know is that the pain is sensational. The doctor at the Fracture clinic has arranged a Physiotherapy appointment and I’ll give it a go but the problem is essentially that I won’t allow my body to move where I know It could cause blistering pain, and if the physiotherapist goes there, she’ll understand why.

[jeff605Participant]

Graham, your experience as described in your post is nothing short of disgusting ! I have had the problem of not being sure if the doctor is talking to me or not, but not to the degree you have experienced. It’s such a shame there is this variation in behaviour and treatment by consultants an experience such as yours destroys your trust in them, whereas my recent meetings with a surgeon about reversing a stoma – although I didn’t get the result I was hoping for – couldn’t have been more helpfully, clearly and kindly presented, and my vertobroplasty operation on Monday last was carried out in a caring and dignified manner. ( don’t know just how successful it is my back pain is reduced and I am standing up straight, not sure about walking yet, think it will take some time to build this up).
Knowing just how painful back pain can be I really feel for you Graham , and hope your doctor can sort the drugs, etc, out. Being caught in the middle of consultants and GPs isn’t a good place to be as I know from past experience.
I hope you get relief from your pain soon Graham, and wish you all the best for the future. Long may the MGUS continue, mine lasted 3 1/2 years. Jeff

[HarmonyParticipant]

I am so sorry Graham- sounds like a bloody nightmare which is the last thing that you need when you are in pain and therefore vulnerable. I’m afraid that it just shows that we can’t have blind faith in the medics but always have to question, query and even make suggestions- which is so wrong but necessary. Is it possible for someone to attend appointments with you so that you have a second pair of ears? I’m not medical but is sounds to me like you need to have a MRI done.You could phone the myeloma UK info line- they are very helpful- and ask for advice.

[Author]

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