How to get treatment. Don't want to be labelled agressive or mentally ill.

[pieinthesky123]

18 months ago I was referred to urology to investigate bleeding. The scan (the one where they inject a contrast dye) detected a mass which the radiologist flagged up as suspected cancer. I found this out by accident 10 weeks later after receiving a copy letter stating I was unaware of the mass etc.

I was assured by the urologist this was probably a fibroid and nothing to worry about. I had no biopsy and no gynae problems whatsoever.

Still bleeding I went back to my gp and upon examination was referred to a colo-rectal surgeon as a suspected cancer patient. This surgeon mocked me saying what did I expect of him as he was a general surgeon. I replied I was attending under my doctors advice.

I informed my gp, who thought she had sent me to the wrong surgeon and would investigate asap. Two months on, despite my chasing up I have heard nothing.

My recent blood test shows my haemoglobin is 6 and my ferratin 2.8 I feel terrible fainted twice, once breaking my leg during a dizzy spell. My chest is tight and breathing is difficult. The iron tablets are not working obviously and I am still passing blood. I take pictures to show the doctor but noone seems bothered. The gp often rang me to ask how my chest was as I can feel my heartbeat constantly but did nothing. She said to go to casualty if I felt worse etc but did nothing more.

Do I come across as a 'loon" or what as I cannot get anyone to treat me. Could I have cancer and this not be a fibroid. How do I get taken seriously as this is seriously worrying me and I cant get anyone to listen. How do I insist upon investigations without being labelled "difficult" or "aggressive" etc. I have no mental health history, not that, that should matter, but I think they think I am a hypocondriac. My dh who has accompanied me to the gp or hospital describes my experience and healthcare as bizarre and unbelievable unless witnessed he cant get anywhere on my behalf even. Any thoughts would be helpful.

This sounds awful. You poor thing. I think such chaotic and inappropriate care warrants a complaint to PALS which is the patients liaison service. They tell you to make a complaint to the GP first.

I contacted PALS about a lady I'm a carer for, who was having to wait and unacceptably long time for results for tests for cancer and they acted pretty damn quick and took my concerns very seriously.

You need to be very firm and assertive when complaining to your GP - tell them what you want to happen and if they are still messing you about then contact PALS. I hope you get this sorted out quicky. It's just not on.

www.nhs.uk/chq/Pages/1082.aspx?CategoryID=68

I would contact PALS anyway, they really are good. I had to contact them over mental health treatment for a family member, things moved swiftly after that and they ring you back to check how things are.

Goodness, you poor thing

I agree with contacting PALS, they can be pretty quick.

It sounds as though you're severely anaemic (explains why you're out of breath, feeling faint and dizzy and your chest pains). It may not be that the iron pills are not working, but they are not enough to top you up. They usually want a patient to have a blood transfusion if their haemaglobin drops below 7.5 (may vary depending on your HA).

Are you able to ask for a referral to a different hospital? If you're still feeling weak/dizzy/chest pain then it may be worth your while going to A&E and telling them that you feel worse. They will check your iron levels and can sort out a transfusion if you need one. They will also be able to sort out a specialist appointment. I'd go to a different hospital though.

Fibroids do cause bleeding, but they need to look into things properly and give you the appropriate treatment for your anaemia.

I hope you're on the mend quickly

Writing a timeline is a very good way to make your point in a factual, unemotive but convincing way.

Date 1, experienced bleeding, visited GP, referred to urology
Date 2, attended scan, did not receive any feedback
Date 3, received copy letter sent by Y, stating Z
and so on.

Give a written copy to whoever you're making the complaint to. Verbal comments can be pushed aside, but a list like that, on the record, is harder to ignore.

I will contact PALS and prepare a straight to the point timeline. I am waiting for a doctors appointment but as the receptionist said it was not urgent I can't make an appointment in advance as they have all gone. I have to ring each day hopefully they can fit me in.

I will firmly insist upon a referral and I am toying with telling the gp I am contacting PALS and giving them a copy of my timeline for the record.

I went to A and E when I broke my leg, explaining why etc but they didn't do anything about the faint as it was being dealt with by the gp.

Will also flag up some inconsistencies in my medical records as I cannot get critical illness insurance without restrictions due to my brothers illness being hereditary and the tropical disease I caught when I lived in Gambia. Except I don't have a brother and have never lived in or visited Gambia. I discovered my pregnancy isn't recorded on my hospital records either when I answered some medical questions at the hospital. Its all very odd, my dh is convinced that my records are muddled up with someone else. I once had test results sent to me in the post for something that I hadn't had tests for. Again noone seems to bothered about this within the NHS.

Thanks for all the replies and advice, hoping PALS can sort this out.

Hmm. It is sounding as though they have you mixed up with someone else, which would explain a lot. Best of luck with PALS

OK, that's the second "go to A&E" you've had, OP. From your GP, and now from MN (from a poster I believe knows what she's talking about).

Just go.

When you get there, tell them you believe your medical file has been mixed up.

Maybe take (another!) list of symptoms and recent medical history, to give a clear picture so they needn't rely on the muddled files.

It shouldn't be up to a GP's receptionist to decide whether someone needs to see a doctor urgently. Be firm and don't let anyone convince you that you shouldn't be treated quickly. Medical records can have all sorts of inaccuracies on. I think it was to do with when they were being transferred from written to computerised versions. I have a friend who's records said she had heart failure when she hasn't and the same lady I mentioned making a complaint to PALS regarding, had kidney disease on her records. It was a good job I know her medical history because in A&E when they asked her about it, she didn't know what they were going on about!

Sorry you're having such a rough time of it but fight your corner and I hope you get sorted soon.

Goodness me, that's shocking. No wonder you're feeling paranoid. I agree with writing the timeline and being assertive as you can. Hope you are taken seriously and treated soon.

pie - please go to A&E at once. I ignored symptoms for months, then a routine blood test showed I had haemo level of 6.8. I was rushed in for an emergency 4 pint transfusion and multiple tests to find the cause. Please go, you're not well.

The reason that you can feel your heart beating all the time is that your lack of red blood cells is making it difficult for your heart to provide the rest of your body with oxygenated blood.

Going to out of hours doctor. Taking a list of my recent history along. Looked online at my A and E waiting times and it was quicker to get seen at ooh who can arrange an admission if necessary so I was told.

Thanks everyone, its much appreciated!!

Good luck! Hope both the medical prob and admin prob get sorted.

Brilliant, well done! I hope you can get this sorted, please come back and let us know how you get on

Just to update I need a colonoscopy and camera down the throat to look for bleeding, the doctor mentioned a transfusion of ferratin. I probably don't have the fibromyalgia I was diagnosed with, it more likely to be the anaemia.

PALS don't seem to exist when we looked but there is something in place called Pohwer if I remember rightly, but will contact them and see what they suggest.

Thanks for helping me out, I still feel like a trouble maker because I had to cause a "fuss" to get seen but I will get over it I am sure.

Glad you're "in the system" properly now. Hope they can get on top of it.

And PLEASE don't feel bad for standing up for yourself. It's awful you had to make a fuss to get treated properly - you should have been taken seriously from the start.

Lots of good luck for sorting this out. If people had done their jobs right first time, you wouldn't be having to.

That's good! I hope everything goes OK.

Lots of luck getting sorted. So glad you've seen someone and there are some more tests etc in the pipeline. And absolutely do NOT feel bad about making a fuss. You shouldn't have had to but sometimes it's the only way to get the help you need. My friend is a doctor and says never be afraid to kick up a bit of a fuss if you're getting nowhere or to be insistent.

Thanks for all your help and reassurances. Hopefully I will be on the mend soon and won't ever have to cause a fuss again. Thanks for all your help and support its much appreciated!!