[bandityogaParticipant]

I have submitted my letter of complaint to NHS regarding the late diagnosis of myeloma of my husband Ian. I received a phone call from NHS and Morag has advised that they are treating this as red and it may take a little longer to resolve as they want answers from all sources of all who were involved with Ian's care.

They will advise the outcome and I will keep you posted. It won't help Ian now but it will be good if it can help someone else in the future.

Ian is getting stronger and his bed sore is healing. We see the consultant on Monday and hopefully he will get good results from his bloods and we will discuss maintenance.

Maureen & Ian

[eveParticipant]

Hi Maureen

I do not know how your husband was diagnosed!! So impossible to comment except to say it usually begins with GP, I wrote to my original GP,asking questions wanting answers and I stated clearly no further action would be taken as I understood in general they do not consider Myeloma they consider back problems.

My most important question is after he was diagnosed with vertebra damage plus osteopenia , why he did not send him for an MRI,

The report read
XC. Thoracic Spine
There is a mild anterior compression of what is properly T8 body,possible slight anterior compression of T3 it noted the bones appear moderately osteopenia . Generalised degenerative changes are present at multiple levels.

His other symptoms were sickness,pain.weight loss.
He said it did not warrant an MRI scan. People do not realise these reports are being put on a computer and read by a Radiologist any were !!! New policies,as to no MRI that was purely money.

In the space of 5 months and the treatment prescribed by his doctor which was large doses of Calcium constant visits to doctor he only took blood test!!!, . That's Slims story. It's all about money.

I Wish you luck, as for the treatment in your husbands case while in hospital,sad to say its the sorry state our hospitals are in,it's wrong about his treatment,but I am not surprised,good wards bad wards,I thought they brought matrons back to improve wards not to keep consultants happy running after results. Good luck Eve

[MothasParticipant]

This is always a tricky one isn't it.

I had shoulder pain which was misdiagnosed by my GP as rotator cuff syndrome, which to be fair to him I displayed all the typical symptoms. He was going to refer me to an NHS specialist but because I was in such pain I opted for a speedier route and I plumped to see a 'top' private consultant instead. Who also confirmed it as rotator cuff syndrom and gave me a steroid injection which didn't help at all. It wasn't until I then went back to my GP to ask for an MRI scan that the awful truth was revealed.

Speaking to a young Australian registrar about this, he said it would never have happened in Oz, as soon as I had complained of pain, given my age and the nature of it, they would have done an MRI scan for possible cancer immediately. Different treatment protocols set up to catch problems earlier. GPs need to be trained to watch out for the symptoms and act sooner than they do.

I have to say, once I got past the GP and on to a specialist consultant at UCLH my treatment has been excellent. I do think you have to be proactive though, chasing things up etc. It's important to be an 'active' patient. It's almost like having a job.

I've considered putting a complaint in, but to be honest I've got enough on my plate as it is.

I do sympathise though and good luck with it.

Tom

[tomParticipant]

Hi Maureen

Well I was told I had a pulled muscle or a bruised rib when I went to GP, and before I left her I had another Dr brought into the room as I wanted. Second opinion as I knew it want one of those.

And after a bit of a fall out with both Drs I was given a chest X-ray , and as they say the rest is history.

Good Luck with it all

Tom Onwards and upwards x

[bandityogaParticipant]

Hi Eve, Tom & Tom

Ian first went to his gp in April suffering from back pain and tingling down both arms with weak hands. Sent away with pain killers. Went back several times to gp as back pain increased in the cervical thorasic area and he had a lump in his back. He was sent to see a specialist at our local hospital. Specialist advised he was a bit stiff and to go for physio. No x ray no mri nor a follow up appointment. Ian had physio for 13 weeks which actually made the tumour in his back grow and caused the compression. He went back to his gp to be referred privatley as he wanted an mri scan. NHS do not want to spend money. Saw consultant privately, who also works at our local hospital and he said he would have sent him for an mri scan if he had seen him in June and he would have strong words with his colleage.

Ian had to have surgery for compression of the spine which has left him partially paralysed. The surgeon at Edinburgh Western General said we should put in a complaint as Ian had clasic signs of myeloma and there was a drive on in Scotland for doctors to look for the signs of myeloma.

I have complained to the hospital board against the specialist and also our gp and got a phone call and letter from a very nice woman who is looking into the complaint and wants answers from all concerned.

Maureen

[eveParticipant]

Hi Everyone

Interesting reading different diagnosis,which makes the difference between damage and no damage!!!
Tom you surprise me,I thought you would think doctor know,s best ,learning new things about you,takes something to question a doctor or 2 doctors opinions.

Tom M. I agree completely with you ,you do have to be pro active,in many ways I do blame myself,I new something was so wrong,just could not get the doctor to listen,once last blood and urine taken ,we saw GP,he told us he was 99 percent sure it was Myeloma and would make a urgent referral while he was doing this Slim was being sick in his sink!!!.10days later we saw consultant within minutes he was admitted AKF plus hypercalcma . So my guilt is I should have taken Slim to A&E long before.
Maureen my concern was I did not want it to be missed every again!! The doctor who diagnosed Slim,was excellent I know she also diagnosed Amyloids in some else also brain tumour it just goes on and on, She moved surgery,local talk is she cost the old surgery to much money,. It changed nothing except a lot of patients like us left the surgery, and I am sure there is an incorrect references in the files,as you will also find out when they answer your questions.!!! You will think you dreamed everything!!.

The problem is time,at the moment you must be angry but so tired,you will not achieve anything unless you are prepared to make it legal.you have to prove responsibility plus causation ,grey men in grey suits,as soon as that happens the legal side kicks in,so you will not get answers that correspond with your version of events. .

I do hope you find an honest person who will tell you the truth. Love Eve

Maureen I have just seen your second posting!! Thought Slims Diagnoses was bad,but Ian beats Slims. Love Eve

[dickbParticipant]

Having gained limited knowledge of the way things work here in Germany and comparing it to the UK, the big difference is in the thinking. Because here health care is insurance based the thinking is very much prevention rather than cure. To this end the insurance companies are happy to pay for comprehensive health examinations because they believe in picking up problems early enough before they become expensive. The attitude with the NHS seems to be not to spend money unless absolutely necessary – usually when things have got far worse and by definition are far more expensive to treat.

My own experience bears this out. I knew last September something was wrong because I kept suffering from unusual infections. I asked my GP for a full medical examination and was told not to worry, I'm still young. Within 4 weeks of being in Germany I was offered a full medical including blood tests, urine, Stool analysis and ultra sound. This was paid for by the insurance company and through this my MM was picked up.

There has to be a fundemental change in the thinking of the NHS managers before things improve and then costs may start to reduce.

[mhnevillParticipant]

Dear Maureen and Ian

I do wish you well in your battle. I'm glad that you, Maureen, have the emotional energy to carry on with it.

I was misdiagnosed for months as worsening arthritis, when the fact I had reported weakening and falling (not results of arthritis) should have alerted GP. I also begged for Private Appointment with Consultant, but couldn't even get that! Consultant said if I went to him I would have to pay for ALL subsequent treatment!!!

When I was finally admitted to hospital ,when completely unable to bear my weight, a simple test, knocking my knee with no response, immediately alerted a general Consultant that something serious was wrong. THEN came all the tests, MRI, Full body xrays etc. A tumour on my spine was causing compression. This was removed within a week and Myeloma diagnosis followed. All this five months after I had started complaining of severe back pain. One physio told me my problem was "in my mind" because I had lost confidence! (I think that was my lowest point pre diagnosis.)

The General Consultant made a fuss for me, and as far as I know, protocols were changed in my area and folk were sent for MRI scans before they saw a Consultant. The laugh was, an Appointment to see a Consultant eventually came for a months after all this had happened.

I was very fortunate not to be paralysed as the Consultant said youe very rarely get the use of your legs back once you have lost it. For that I feel very grateful, but I could be walking much better now if I had have had that earlier diagnosis'

A couple of times I shouild have made a complaint myself, about my treatment, but it takes energy, that with everything elso going on is often just too much.

All best wishes to the two of you. Get truth and justice, not just for you, but for all of us.

Lots of love.

Mavis x

[eveParticipant]

Hi Everyone
Well the patten is there failer in the GP. Surgeries,what can we do about it?? How can we change it??? Because it is costing lives and costing the NHS a lot of money to give the patient extra life. . I do not believe as individuals we can do anything about the GP.!!!
I tried and failed,lip service springs to mind.I took Myeloma information to GP,never to be seen again.

As individuals we have no power as a group under the Myeloma umbrella, may be things could be changed,I believe a simple blood or urine test can trace Myeloma,can anyone tell me why it's not the norm,example you attend GP bloods are usually taken why is it not on normal blood criteria .?? Is it money!!

May be Myeloma UK can give us some answers??

Eve

[dickbParticipant]

Hi Eve,

As I said, here in Germany it is the norm for the doctors to give full medical examinations including blood and urine tests. They are paid by the Insurance companies to do so because they understand that it is actually cheaper for them to find problems early. The problem is the UK mindset. Everything is about taking a chance and not spending money. We see it in late infrastructure projects, short term business investment strategies, very poor planning at all levels of government. It's don't spend unless you really have too and then only the absolute minimum. It doesn't matter if it doesn't last that long because it will be someone else's problem. The NHS is just as bad because it's managers come from the same pool. None of them seem to understand the benefits of long term planning and if they do, then they seem to be made to follow the short term route. After all, we hear about annual budgets and 5 year plans but here everything works on a minimum of 10 year planning. That's why they have far better value for money on their projects and better actual health care. It's not all good. The administartion here is dire at times but losing files is a small price to pay against losing a patient.

[MothasParticipant]

There's some truth in this for certain.
It's also a question of training GPs to spot and be aware of potential myeloma symptoms more proactively. Certain symptoms should raise red flags that lead automatically to immediate testing.

[EvaParticipant]

Dear Maureen,

I?m pleased you are making this complaint. Even though myeloma is a difficult one to diagnose, taking a number of very different tests to rule various things out is the only way to respond if the symptoms persist and can?t be explained.

My own very superficial look at how societies evolve suggests that change is more likely to happen when an idea has ?found its time? – in other words, quite a number of people are talking or writing about it- and ( this is a big ?and?), the people or systems that need to change have to be challenged in a way that is not always comfortable for them. Otherwise, they will just repeat the statement, ?Lessons will be learned?..? and nothing will accomplished.

Eve ? it?s good to be proactive as you wisely point out ? but it?s not always enough. I had all the symptoms of mm for a number of years as well as worsening anemia. It was worrying because I was young, appeared fit and used to run 10 km a day. Apart from all the classical mm symptoms, I was having serious trouble with stairs. I continued to work full time and looked after two sons, and somehow, managed to squeeze in a rich and full life. However, I kept returning to my local docs and they kept talking about possible diabetes( tests showed I had none), and about a mild heart murmur which hadn?t affected me in the past. I had spectacular migraines, and was a bit scared that if I got too bolshie, I might be considered troublesome and not treated with patience when I?d stagger in with a migraine. In time – this is after another three or four years, I asked for hospital tests for my ?weird? set of symptoms.

This may be difficult to believe, but I went to hospital in Scotland in about 1997/98 for a week of investigations. We had migrated here with the children in 1993. Basically the same things were tested as in the local surgery, but at a more sophisticated level. Again, diabetes( I wasn?t even close to it); an offer to stretch my bladder so I wouldn?t want to pee so often ; proper heart tests which suggested that the murmur was so minor it was unlikely to affect normal function. I wasn?t aware of any blood tests that went beyond the basics. I did not suffer from depression though my work was very demanding and even stressful at times.( I used to be a secondary school teacher in an inner-city area in Melbourne that had quite a few problems and pupils to match, and now was working in Scotland with a totally different set of challenges). I asked the hospital staff about cancer and whether I might be hatching something- after all, quite a few relatives had died at a very young age from the illness. A family tree was even drawn up and a few weeks later I got a letter saying I was not likely to have an increased predisposition to cancer. We were going around in circles.

Over the next few years, I continued to have a number of spectacular infections and illnesses which could have pointed to a major problem with the immune system. There wasn?t much joined up care, and each time, the local docs expressed amazement., especially when on one occasion I almost died. Ambulances were called out when bone pain was in the left side, and paramedics would assess if I were having a heart attack. I looked really fit, I didn?t smoke or drink, I exercised, showed a lot of positivity. Each infection was treated with massive doses of antibiotics when appropriate. When I had severe bone pain, I was given a lend of crutches for a while from the local surgery and I kept working. Sometimes I was taken back to hospital for a re-run of the diabetes and heart murmur tests. I was starting to feel quite embarrassed, especially as my husband was the type to not go to the doctor unless a body part would be practically hanging off.

I think I was torn between assertivenss and not wanting to be labelled a hypochondriac. I always had my mother?s experiences in the background. When I had just started uni in Melbourne, my mother went to her local doc and explained she had a lump growing in her breast. I don?t know what happened, but after the appointment, my mother went to bed and didn?t get up for at least the next few months. She had never done anything like that before. She refused to talk about the appt, except to say that the doctor was not intending to do any tests at the time and that he felt her perceptions were coloured by anxiety. My father and I didn?t know to do. This really was in the days when doctors were seen as demi-gods. We didn?t call another doctor but looked after my mother as best as we could and assumed that she had indeed, succumbed to some depression or nervous condition.`

I?m ashamed it took my father and myself about three months to act. My mother kept refusing to see another doctor and she seemed to be going downhill. We called an ambulance without her permission. She was carried out as a weak bundle. Once in hospital, many measures were taken to hydrate and feed her. Tests were initiated without us knowing what was going on. We were told my mother had breast cancer that had spread to the glands and in such a way that treatment would be of not much use. I was extremely close to my mother and remember my immense grief as a doctor tried to explain to my eighteen year old self what the words ?palliative? and ?metastasized? meant. Once my mother had a diagnosis, she seemed much less depressed. I contacted all the major cancer treatment centres in Melbourne and begged for treatment, special treatment, any treatment, that would keep her alive longer. I lost all my inhibitions and inertia. One doctor eventually agreed to an experimental protocol.

My mother responded amazingly: she outlived all expectations- four years ? long enough for her to see me finish uni and attend my wedding ? her dearest wishes.
Did I learn anything? Not really ? we all think each case is a one ?off .

I?ll continue my story. I?ll never know if I?ve had the longest case of smouldering myeloma in the world. I kept presenting to my gps with all the classical myeloma symptoms . I worked hard at my job. My children grew. I got worse. My local docs made noises about increasing anemia and I saw the word ? platelets? on my medical file. But no-one was saying anything or explaining the need for extra tests. When I was at the exact age when my mother was diagnosed, in 2008 – I did something very strange.

I went on the internet and typed in my symptoms. Something that non- medical non-professionals are perhaps not encouraged to do as it can bring about stress and misinformation.

I recalled that my auntie died at 42 from cancer, and that her daughter died at exactly the same age from a different cancer. Their cancers has also been discovered at exactly the same time in their lives, and this came after an extended battle with the medical system; there was quite a lengthy period during which doctors didn?t agree to appropriate tests, saying my relatives were perhaps just ?anxious.? Surely I wouldn?t be diagnosed at the same age as my mother? Was I getting carried away with a fear of history repeating itself? But straying into certain parts of the internet for only about ten minutes made me aware that I could easily have a haematological malignancy or an illness of the immune system- I was no longer waiting for a doctor to come through for the first time in my life. This new world of doubt and questions made me horrified, frightened, stressed. In other words- anxious.

At the next appointment with my local doctor, which I demanded to have quickly, I told him what I thought my diagnosis was. Very inappropriate behaviour for a patient. I eyeballed him and said I had to have further very specific tests immediately. He complied, almost in silence. Four very difficult weeks later, my husband and I were told that I had multiple myeloma, 50 % plasma cells in the bone marrow, lesions: treatment was started on the same day.

Since then I?ve had a wonderful five years with some blips ? at the end of this month, if all goes well, I will have survived a year longer as my mother. I?m on heavy treatment at the moment, but I?m alright. I felt a sense of calm once I was diagnosed, though it was an awful day for us. One of my sons is making noises about proposing to a girlfriend. I always thought my mother?s ambitions were a bit modest, but, believe me, I now understand. In two days time, I will attempt to travel to Gdansk to meet that son and his gf who?ll be coming from Shanghai to spend a few days with me and to have a holiday. The gf?s parents- including her mum who?s also been on chemo very recently- are also coming from Germany as a last minute decision, and we?ll meet for the first time, in a house not far from the sea and a forest, nor far where my parents were during the War.

Can you learn anything from what I?ve shared? Yes, my life hasn?t been ruined ? I?ve had lots of superb times even since late diagnosis. But on the other hand, I believe if a complaint is valid, do it. Even a malpractice claim is ok in my opinion , as long as it?s judicious and there has been some major negligence and you believe that the fall-out will be better than a cover-up. And a gentle letter might be more in line with what you want instead- if it?s too long ago, or you are too ill or hassled to say much, and if you can really see it from the doctors? point of view. You can get someone else to write to those who misdiagnosed you, even if it?s years later. They need to know. There have to be lots of revelations rather than overlooking things, in order for change to occur. And I do understand that many of you had quick and appropriate diagnoses and are experiencing wonderful care. I also appreciate that MyelomaUK are doing great work to educate everyone, but they probably need your back-up in cases of late diagnosis. Even someone who reads the website occasionally and doesn?t write in might be able to contact their consultant or doctor about late diagnosis in the manner they see fit, as this might make a big contribution to the future of myeloma treatment in this country.

Best of luck,
Eva

[LornaParticipant]

Hi Maureen and of course the rest of the gang.

Having read so many stories of late diagnosis Mike offered to help out at our GP's surgery talking to the medical students who train there raising awareness at a grassroots level. If we want things to change we have to be proactive.

Lorna x

[eveParticipant]

Hello Eva

I was trying to say once you have been diagnosed and think there are questions to be answered!! Concerning your treatment leading up to Myeloma being diagnosed ,once you write a letter asking questions, the legal implication kicks in, so your chance of any truthful answers if mistakes have been made is nil. As I said lip service springs to mind!,,
Until we have more openness and doctors don,t feel they might end up going through litigation we will not get answers or see improvement when mistakes are made.
I am against most forms of malpractice,only the people concerned know the cost and I am not talking money,trust time and people's life's spring to mind,it is a door which cannot be shut,it's ripples have far reaching affects,I much prefer the NZ way.

My understanding is Myeloma UK are very aware that GP have problems diagnosing Myeloma,it is known they might just come across Myeloma once in there life time.

Most people adapt to life changing events, Myeloma is no different also a lot of good comes out of adversity, I realise myself how lucky Slim and I have been,but I do also understand that lots of people on this site have all there dreams taken away.
Diagnostic mistakes should be recognised not covered up because of legal complications. Eve

[tomParticipant]

Hi Eve and you all

Eve "Tom you surprise me,I thought you would think doctor know,s best ,learning new things about you,takes something to question a doctor or 2 doctors opinions."

I did and the reason is I knew it wasn't a bruised rib nor a pulled Muscle as I have had both of those many a time 🙁 (rough pubs and a cheeky grin dunt help lol)
And yes I will challenge anyone if I feel that I am half correct or have doubts, this time I was correct am pleased to say.

My Consultant has got a free reign on me as he has made me better and will continue to keep me going 😀 , but that said he did get a telling off once as he missed me for my SCT and sent another one in my place.

And Eve I am pleased I am keeping you on your toes and the odd surprise.

Love Tom Onwards and Upwards xx 😎

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