I was diagnosed with ET on 19/08/2013, by haemotologist, he told me my platelets have been high for 2 yrs. My GP did nothing!! Can I sue?

Is this clinical negligence by my GP? If so, what should I do about it? I would really appreciate any advice on this.

smp1046

[skodaguy]

I hate to get involved with something like this and I confess my instinct is telling me not to. However I get a feeling you could end up involved in a nasty situation that ultimately achieves nothing for either yourself or your GP. I have previously posted that I am a GP who has a history of PRV, leading to MF and CML. Would you be willing to share more details with me on a private basis such as your counts and any consequences you have had? It won't remove any legal rights you have and I am no an apologest for my profession. If you prefer not to then just ignore this post.

[tombs]

Hi smp46. Don't think you'll get a better offer than that from skodaguy.

[Daws]

Diagnosis of an MPD is not really something a GP has the specialisation to do. It is a complicated thing and often goes undetected for some time. I obviously don't know the detail of how this all came about for you, but if i were you i would focus on the here and now. Focus on yourself and living with your condition and making it work for you. Diagnosis is tough, and i can understand why you want answers as to why it was not detected before, however, I hope you don't mind me advising you to not waste energies on something that can not be undone. Live your life in the positive. I have learnt to do that, and it is the very best thing.

[PVPVPV]

When I was diagnosed with PV in 2009 (after requesting a blood test for another issue), I felt a bit aggrieved that I was blithely unaware my blood situation was increasingly exposing me to clots/stroke etc yet we are supposed to have a great primary health care system. I thought maybe there is a case for more extensive screening e.g. simple blood test. However, I am not so sure about all this. There are limits to what the PHC system can pick up and, although GPs are well paid, perhaps too well paid, we cannot expect them to pick up everything. All you can expect them to do is to be quick about referring you to the right place and being supportive, being aware of your condition when you go in for other things etc. I think in your case it would be extremely unfair to sue your doctor, unless you have special reason to think that the doctor was negligent, which of course can happen. Best Wishes

[rubyrubyruby]

I was diagnosed almost 2 years ago but since found out my platelets have been 'above normal' for 10 years! I had also frequently visited my GP reporting fatigue and aching legs and joints but was told I had a virus each time. I have also had 2 children in that time and nothing was picked up then either.

To be honest I think many of us have had an MPD for longer than we have been diagnosed. I am not sure what you would achieve from taking it further, other than more stress, which will not help your condition at all.

[westie1000 in reply to rubyrubyruby]

I got the same answers at the GPs.2heart attacks and 3,4 tias before they noticed my platelets. Over a four tear period..My new Gp noticed it straight awy and sent my blood for the JAK2,and it came back positive.Easy get out a virus ,iwas a bit upset to say the least.

[SteveRupp]

My advice is ignore the legal "no win no fee" route, be thankful it's diagnosed and go forward. Believe me (from past experience) the legal route is always very stressful and never guarantees a positive financial outcome.....

[ETphonehome in reply to SteveRupp]

What makes you think smp1046's objective is financial Steve ?

[SteveRupp in reply to ETphonehome]

Why sue otherwise?

[Eadaoin]

In 1998 a GP was surprised that I still had a raised platelet count on a follow up blood test for food poisoning. She immediately referred me to Gastroenterology at a nearby London hospital. After months of tests in various Departments it was finally decided by the Haematology Department that the raised count was due to ET - there was no other explanation. A bone marrow biopsy was then done confirming it. I've no idea how long I have had it and am only interested in how well it is being monitored and treated now. Keep looking forward.

[Hidden]

People on this site are well meaning I am sure, but I think they have misunderstood me. I am not angry re: the ET, but the fact I was a risk factor for heart disease and strokes, whilst the GP did absolutely NOTHING !! No monitoring the platelets, EC Aspirin daily...... NOTHING. My life in their hands, I have a family who need me, so I will do all I can.

[MsQuestions in reply to Hidden]

I was just diagnosed myself with ET. My practitioner who was new asked me “ has anyone ever told you that your platelets are to high to ignore”? No one had ever mentioned it and the new practitioner said after looking at my records that it had been a couple of years with the high platelet count. I understand your frustration. She sent me to a hematologist and he did a bone marrow biopsy and confirmed I had ET. He put me on a “chemo pill” Hydroxyurea which has horrible side effects and it is so strong I can’t touch it with my hands. I’m lucky to say I haven’t experienced any of the ugly side effects but I would not rather take it, I am looking for something natural I can take that will help lower my platelets. I would appreciate any help.

[rubyrubyruby]

I can understand how cross you are, as I said in my previous post, I found out that I have had high platelets for a long time and my GP did not pick it up. I had blood test results at least 2 or 3 times every year over a 10 year period and still no one thought to question the platelet levels. In that time I had gall bladder operation and had 2 children. I feel lucky that I didn't have a blood clot/stroke etc during that time BUT life is too short to put all your energy into a fight with your GP, which you will very likely not win.

I really do understand where you are coming from, as do many who have been in your same situation on this forum.

[geordie]

hi

I can understand how you feel. I also went to my GPs numerous times as I was having incidents of a racing high heart rate, many light headed episodes, weakness any many more symptoms all were attributed to my stressful job. the GP was monitoring the platelets which were over 700 and looked back over my records to find they had been recorded as 400 10 years before. Looking back I had had many symptoms such as itching hot sweats etc since then all attributed to stress. Eventually after many tests and over 6 months, the GP contacted haematology and I was confirmed as JAK2 possitive with an appointment made to see a Haematology specialist (the GP had not heard of this blood test or the illness associated with this mutation.) In November 2011, I collapsed at work (before my haematology appointment) and was taken to A&E there I was informed I had had multiply minor stocks and I also started to have a number of incidents of uncontrollable moments (fits). I was then diagnosed with PV with red blood cells thickness at 47 and platelets over 700. I had 8 pints of blood removed in the first 4 weeks to thin the blood, which over time reduced to a pint taken fortnightly and monthly until a balance was achieved using drugs. Like you I was very distressed as I knew I was not well and over many months my life had been put at risk. I was thankful I am still here and now managing to live with my illness. My GP was very upset that she had not picked up the illness and has been extremely supportive over the past 2 years. As noted above a GP only has a general knowledge and in many cases are unaware of the more unusual illnesses, so tend to work through a list of 'normal' illnesses before seeking the knowledge of the specialists. Take care it will take time to come to terms with your illness and how to manage the symptoms.

[Borage]

Hi smp,

Life's too short to waste getting in a strop over things. You only harm yourself by getting angry and aggressive, and trying to find someone to blame.

Your GP did not cause your illness.

Raised platelets are fairly common, the 'normal' range is pretty wide, between 150,000 to 440,000 per millimeter and it is constantly changing. Most episodes of raised platelets return to normal as the body heals itself. A good GP will watch and wait, then investigate the more common causes rather than starting with the most obscure.

Most GP's will never come across MPN, even my haematologist is not aware of all the annoying symptoms of ET, a General Practitioner cannot be expected to be a specialist.

My GP did exactly this, I was referred to a rheumatologist, then to a haematologist. It takes time to find the right diagnosis.

As for litigation, no one profits except the law firms.

When did we become so greedy as a nation? Blame someone, sue someone.

The NHS is being bled white, over 10% of the budget is paid to the lawyers! Think how many new hospitals, doctors and nurses, and reduced waiting lists, that would pay for!

Grow up and take responsibility for your own health. Learn about your condition and learn to live with it.

[light]

When I was diagnosed with ET two years ago I asked my haematologist how long this was going on...... Im Guy's hospital patient, and she told me that no one can ever tell you how long you had your platelets high as it is very hard even to make accurate diagnoses. I had bone marrow test and biopsy in the process of diagnoses. We all understand how difficult is to hear your diagnoses. I was in shock for long time. For what is worth I and, I am sure many others had all sorts of different feelings such as even being angry, disappointed, disbelief,,,, etc....

Now knowing all this I would focus on helping yourself with accepting this situation and saving your energy for it. You will need it.

Hope that this helps. Good luck!!

[jamieisabella]

Hi, I was diagnosed with ET 2 yrs ago after having monitored my platelets myself for 4 yrs! My Gp didn't seem to think this important and eventually after a fair amount of harassing I was seen by a haematologist who confirmed I was Jak2 positive. Needless to say GPs don't seem to be "au fait" with this condition. However, this is not the point I want to make. My sister died 8 yrs ago as a direct result of a Mis-diagnosis by GP and hospital consultants. For 5 years my family fought to get some acknowledgement of their error or at least an apology. This was 5 years of stress, frustration and anger with no satisfactory result. You will find that the medical profession wagons circle and no-one accepts responsibility. I have had to let this go now and move on and I can assure you I wouldn't go through it again unless I had a fortune to invest in a high profile team of lawyers.

Just a thought for your deliberations. Hope this helps.

[jane13]

yes, u can sue but even if you win you won't get much as, so far as I can see, you have not suffered any ill health as a result

[ETphonehome]

smp1046, I fully understand how you feel. No one but yourself can answer your question.

Deciding to take legal action over anything is a personal, difficult, complex and brave thing to do. Who are we to question your decision ?

It is worth bearing in mind however that should you decide to the process will be incredibly stressful and not necessarily successful.

To those that replied I think it's important to realise that when someone chooses to take such action it is not taken lightly and more importantly it is not done out of anger or vengeance but ultimately to try to ensure such a thing does not happen to other people in the future.

[Hidden]

This was my initial thought when I was finally diagnosed. In my case I believe I was mistakenly sent along a gynaecological route because of sudden heavy bleeding and given a hysterectomy and early menopause. Only to find out years later that I had high platelets that showed up at same time. My GP's didn't notice my platelet levels and certainly didn't ever make me aware that they were unusually high. I've been unable to work until finally feeling better recently after diagnosis and aspirin. How I would love to sue for loss of earnings. Having looked into it already it would seem that it's not possible because it's a rare illness. Good luck and keep us posted.

[jane13]

I am pretty sure my GP accelerated my illness by telling me to take iron supplements! result: a fairly stable condition that I had had for several years kicked into life with a vengeance as my bone marrow grabbed iron and roared away! I still feel aggrieved at the GP and at the NHS, which should have a diagnostic pathway to spot MPNs. I'd like to get this out of my head, but would I sue? No: the hassle would outweigh the gains. You could complain to the NHS? If you're lucky the response may not be entirely defensive!

[sand-bog]

I was diagnosed with PRV five weeks ago after feeling off-colour for about a year - itchy,tingling in arms and legs, very tired, breathless, loss of appetite and big weight loss. I was taking aspirin before diagnosis as had previously had heart surgery, and am now on Hydroxyurea 1000mg a day. Don't really feel any different since taking it but go and see the haematologist this week which will be the first time since being diagnosed. Have found this website very informative and think it helps a lot knowing there are other people out there suffering the same

[MsQuestions in reply to sand-bog]

I’m taking 1000 mg of Hydroxyurea a day myself. I was taking 500 msg a day and my hematologist upped my dose to 1000 msg because he said my platelets weren’t at the count he wanted them to be. I am looking for something to replace this medication.

[piggie50]

Hi smp1046,

Do you have a critical illness policy? People on this site have successfully claimed on these policies.

Kind regards

[ElsieR]

Hi smp1046, I feel a bit special as I have an excellent GP who sent me to hospital in the first place with pneumonia and, as it turned out AF. My local hospital I cannot fault. They cured the AF but I still have mild heart failure. For a long time I blamed my fatigue and breathlessness on that but realise now that it is a combination of both. It was my GP who also named MPD first even though I had been attending haemo clinic for some time. I also cannot fault my specialist as he sent me back to my GP because he was not happy with my kidney function ( problem caused by heart pill!) they are still sorting this out but I have every confidence in them all. In retrospect I realise I had MPD for 4 or 5 years before I was diagnosed not being in the habit of visiting GP when I felt great. I put the years of itching down to showergel allergy. I take one day at a time and am thankful that I got to 74 feeling well. Good luck E xxx

[nicki2]

i know it must be very frustrating for you but i dont think you would get a lawyer to take your case i was lucky i fainted and my mum made an appointment for me right away my dr took blood sent it away in a taxi got results back 3 days later got phone call to get retested to go back to gp again 3 days later the dr had made an appoinntment for me to go and see him and he told there was aproblem with my platlets and i had been referred to the western general hospital in edinburgh

[Geoff_mpnfamily]

Wow, I have to say I feel lucky: I know now that I've had my MPD for sometime before I was diagnosed. It was my optician that spotted that something was wrong, she thought it might be my thyroid, so I trundled down to the surgery muttering under my breath "I suppose I better get this sorted out!"

After my blood tests come back they kept writing to me every other day saying my cholesterol was high, it was almost Christmas, I wasn't going to be told what I can and can't eat lol..

Then they started to phone me saying I really need to come in. So.... after Christmas I went in to see the GP, muttering again saying they can't stop me from eating roast lamb.

My GP with a very red face and looking terribly nervous said my cholesterol levels are up but not really that bad, and proceeded to telk me I had Polycythaemia followed by a declaration that she doesn't know anything about it and that its complicated, so im not even going to try and tell you. Lol.

Oblivious to the seriousness of Polycythaemia I walked out of that surgery saying thank god for that, roast lamb and a glass of wine for dinner it is then.