Finding my daughter a good consultant

Loretta

I really need to find my way around the NHS and how it works.

My daughter now aged 35 had a dvt (deep vein thrombosis) in July 2006, her GP spotted it and sent her straight to A&E and they did a good job as an emergency. After that it has been not been good at all, very little information, no one seems to know what they are doing and treatment has been chaotic. I feel that there must be a specialist unit, hospital or consultant somewhere in the country who could either supervise her care or take her on. How do I find out?

She had lots of tests without any real explaination about what they are for. She was found to have protein c defficiency which means her blood clots. Myself and my 2 sons were tested last summer, myself and my younger son are Ok my elder son has also got the condition but has not been offered any advice as to what he should do about it and is not sure where to find this advice we even had trouble getting his results as the hospitsl kept sending them to an address he left 10 years previously, he has never attended this hospital.

Since then she has been on warfarin and has regular blood tests, her blood levels are all over the place and do not seem to stabalise. She has had various medical problems, we do not know if they are connected or not. For the past 4 weeks she has been bleeding, went to the hospital and a doctor looked it all up in a book, which was a bit worrying, not even on the computer, told her he knew nothing about her condition and then prescribed something to stop the bleeding which didn't work. Back to hospital a couple of days ago to a Doctor who knew a bit and said that these pills would stop the bleeding normally but were not to be given when she was taking warfarin. She got a bad cold, went to the chemist and asked if there was anything she could take with warfarin and was given beechams powders, read the instructions when she got hom and it says quite clearly 'not to be taken with warfarin'. This has happened all the way through from day one.

I went with her to see her consultant after she told me that he would not answer her questions. I wrote a list of questions and took a pad and pen to write down his answers. He refused to give any information, I think that actually he did not know the answers. Went back a month later ready to insist that she be refered to someone who does know. Different consultant who did answer some questions, we told him the problem we had and asked if we could see him every time, but he was only there for 6 weeks to lecture and was returning to his own hospital.

Sometime she has too much warfarin and sometimes too little, it is clear that there is not a specialist for this problem in the hospital she is being treated. She is single and works full time and has her mortgage and bills to pay. She is very tired and I think depressed thinking that this is what it is going to be like for ever, normal life seems to have stopped.

I am sure that there must be a Specialist somewhere in the country for this condition, taking warfarin at her age is unusual apparently, or a hospital that specialises in it. I am hoping that a specialist could see her and then advise her own hospital or supervise her treatment. I think we are looking for a specialist in blood disorders, blood clots, dvts that sort of thing

If we manage to find the right place do we ask her GP or her consultant to be transferred, do we have the right? is there a correct way to go about this.

We live only 1 hour from London and I keep thinking that there must be somewhere there, but we would go anywhere in the country

Any help would be very much appreciated and I hope that I have put this in the right place

Loretta

I am sure I did not put this into the Housing thread, I don't know how to move it

HELP!

Nicki

Have you tried googling the condition and looking for proper medical articles written about it, then seeing who wrote the articles and whether they practise in the UK? If the condition is as rare as you think that is probably the best way to find someone who knows what they are talking about.

While you wait for a board guide to move this, why don't you post a link to the post over on the health board?

clutton_2

whatever hospital you find, you will need a referral from your own GP - he is the person to convince that things are not right - have you and your daughter gone to see her GP togohter and told him/her the full story ?

drrobert

Tens of thousands of people regularly take warfarin in their thirties. Your daughter's INR (blood level) and therefore warfarin dose will vary from time to time - this is normal. Your daughter should have a yellow warfarin book which explains a lot about warfarin, and which says which other medicines to avoid.

If your daughter wants detailed information on protein C deficiency and its implications for her and her family, she should ask for a referral to a consultant haematologist with an interest in thrombosis. Most hospitals have a consultant haematologist, so there is usually no need to travel far to see one.

Loretta

Nicki wrote: »

Have you tried googling the condition and looking for proper medical articles written about it, then seeing who wrote the articles and whether they practise in the UK? If the condition is as rare as you think that is probably the best way to find someone who knows what they are talking about.

While you wait for a board guide to move this, why don't you post a link to the post over on the health board?

We have looked this up on the internet which is how we inow anything about it at all, but of course we get a general view and all the horror stories, the people writing about it are all from other countries, mostly USA and India. The condition was really only found about 10 years ago and in teh USA they seem to be taking a lot of interest in it. I don't think the condition is rare it is that the condition has only recently been recognised and I think one day everyone will be tested maybe routinly when they are born.

Loretta

drrobert wrote: »

Tens of thousands of people regularly take warfarin in their thirties. Your daughter's INR (blood level) and therefore warfarin dose will vary from time to time - this is normal. Your daughter should have a yellow warfarin book which explains a lot about warfarin, and which says which other medicines to avoid.

If your daughter wants detailed information on protein C deficiency and its implications for her and her family, she should ask for a referral to a consultant haematologist with an interest in thrombosis. Most hospitals have a consultant haematologist, so there is usually no need to travel far to see one.

My daughter's INR have never been stable, they are either very low or very high and everything seems to come as a surprise at the clinic and then she is again put on an incorrect dose. She seems to urch from crisis to crisis and she never sees the same person twice when these problems arise as they do on a very regular basis and each time the person either says they don't know anything about protein C deficiency or they get an old book down from the shelf and have a look.The 'blood taking' nurses who her that something was not going right. Most people on warfarin are older and because of that are not going to be on it for as many years as my daughter, also because of her age it is, apparently hard to get her blood level. She has seen a consultant haematologist but was told she didn't know anything about her condition.

Her GP did an excellent job by realising immediately that she had a dvt and needed urgent treatment which was excellent but since then she has been under the hospital. She went to her Gp recently and in the past nearly 18 months since it all began he has not had any information about her from the hospital and told her he did not know about protein C. Over Christmas she had to go to hospital and saw an A&E doctor who was very helpful and had a little knowledge and told her she needed a scan. She saw from her notes that her GP had not been kept up to date with her treatment and told her that she would send her to her GP to ask him to refer her for the scan so that he may then get her infomation sent to him. She saw a GP today, not her usual one, but a GP who was very good and also knew a little about protein C and is referring her for the scan and is going to request her notes from the hospital which should have happened automatically and was told that the computers in the hospitals were not compatible with the GP's ones and that this was an ongoing problem.

We will make an appointment with, hopefully, this same GP just to discuss this but it has taken this long for us to realise that she is not getting the best treatment now and that she is being treated by people who seem to have no idea what they are doing. I takes a while to realise this especially when this takes up so much time virtually on a daily basis with hospital visits and her not feeling well, trying to work, worrying about having time off in case she loses her job and worrying about her bills etc.

The first round of treatment was excellent and it does take a while to realise that this excellent treatment has not continued.

Now I know that it is her GP we need to speak to and is the one to refer her, we will do all we can to get the hospital to pass her information to him so he knows what is going on but it would still be good if we could find out where the best place or person is to ask to be referred to.

mr.broderick

Well done your gp, that could have been missed.

OverlandLandy

OP
Bit of a nightmare!

I'm just into my 40's and I'm lucky to be alive - I had massive Pulmonary Embolisms in both lungs. I had to have clot busters injected into my stomach etc....Was in HDU for 10 days...all very touch and go. You know when someone says....there is always some one worse off....well you have found him!!

I'm now on Warfarin for life. And often have to have my full bloods (rather than the finger !!!!!) taken twice a week. The veins in my arm are always bruised! They cannot get me to stabilise - Its unusual but not uncommon. All sorts of things have an effect on your INR (International Normalisation Ratio) Food, Drink etc....not just other meds. My INR is supposed to be 3.5-4 (due to my very high risk - If I get another clot I will not survive it!). This causes a few issues - if i cut myself It can bleed for 24hours! (thats why I often have a beard- not something your daughter needs to worry about!)

In addition I was having a LOT of internal bleeding - this was down to Colitis (I was also diagnosed as having Coeliac Disease....so hay-ho... but the problem is that the dietary requirements clash to a degree) I loved 'rough' foods (peanuts, Sunflower seeds, Pumpkin seeds and the like) but due to my ability to bruise and bleed - they caused me to bleed internally.

I don't tell you this to scare you, or for you to jump to any conclusion that this is what is wrong with your Daughter, Its just that with thin Blood - you can sometimes bleed as a result of some other thing that you might never have noticed!

My local hospital and consultant have been nothing short of Superb. If the Consultant had not come in on his night off (as I was so Ill) I really would not be here, and that is not a dramatic statement. He really did save my life, and describes me as the luckiest patient that he has ever met - by rights i should be dead.

In all of this I found the NHS to be excellent. I think you need to get your daughter to start asking some questions (she is 35 so well able to do this her self I'm sure?) You do need to support her - but she needs to do it herself. You both need to figure out what she needs to know. (write it all out if it helps), then find out who to speak to, and if they don't give you an answer ask them who can....

Best of luck

Loretta

mr.broderick wrote: »

Well done your gp, that could have been missed.

Yes we have found out since that he was really excellent spotting this immediately. A lady my daughter works with knew there was something badly wrong and insisted that my daughter phoned immediately for an urgent appointment and between the 2 of them they saved my daughter's life.

It took us a while to realise that this was not just an emergency that had been dealt with extremely well but a lifelong problem. We are family that don't do 'ill' we have all been very lucky until now so we don't know how all these things work. We have realised that things are not being dealt with properly now though.

On Wednesday we will make an appointment with the gp. the dvt could have been caused by anything but now we know what the cause is the GP may be able to point us in the rigt direction. I think it was a shock today to find that he had heard nothing more after he did his job so well and presumed it was all over which it could have been. I was having a panic and was not sure what to do next but of course I knew that someone on here would point me in the right direction

Thanks, I would be very grateful for any further information.

Loretta

OverlandLandy wrote: »

OP
Bit of a nightmare!

I'm just into my 40's and I'm lucky to be alive - I had massive Pulmonary Embolisms in both lungs. I had to have clot busters injected into my stomach etc....Was in HDU for 10 days...all very touch and go. You know when someone says....there is always some one worse off....well you have found him!!

I'm now on Warfarin for life. And often have to have my full bloods (rather than the finger !!!!!) taken twice a week. The veins in my arm are always bruised! They cannot get me to stabilise - Its unusual but not uncommon. All sorts of things have an effect on your INR (International Normalisation Ratio) Food, Drink etc....not just other meds. My INR is supposed to be 3.5-4 (due to my very high risk - If I get another clot I will not survive it!). This causes a few issues - if i cut myself It can bleed for 24hours! (thats why I often have a beard- not something your daughter needs to worry about!)

In addition I was having a LOT of internal bleeding - this was down to Colitis (I was also diagnosed as having Coeliac Disease....so hay-ho... but the problem is that the dietary requirements clash to a degree) I loved 'rough' foods (peanuts, Sunflower seeds, Pumpkin seeds and the like) but due to my ability to bruise and bleed - they caused me to bleed internally.

I don't tell you this to scare you, or for you to jump to any conclusion that this is what is wrong with your Daughter, Its just that with thin Blood - you can sometimes bleed as a result of some other thing that you might never have noticed!

My local hospital and consultant have been nothing short of Superb. If the Consultant had not come in on his night off (as I was so Ill) I really would not be here, and that is not a dramatic statement. He really did save my life, and describes me as the luckiest patient that he has ever met - by rights i should be dead.

In all of this I found the NHS to be excellent. I think you need to get your daughter to start asking some questions (she is 35 so well able to do this her self I'm sure?) You do need to support her - but she needs to do it herself. You both need to figure out what she needs to know. (write it all out if it helps), then find out who to speak to, and if they don't give you an answer ask them who can....

Best of luck

Thanks for taking the time to answer, my daughter also has blood clotting injections in her tummy daily for 3 weeks at a time regularly and full bloods regularly. I think because of her age, pre menapausal, is the problem with stabalising her it is hormonal.

My daughter is very independent and has dealt with this really well. She only asked me to go with her, well I insisted, when she was not getting the answers and when I went with her I could see for myself that it was really impossible to get information from the consultant, a flat refusal, and this was compounded when we were trying to get get our results, they couldn't send mine because my address did not match the one that was on the list they bought, whatever that means, and my elder son's were sent to an address he lived at 10 years ago and I cannot think where they got that from as it is not in their area and he has never attended that hospital. Chaos.

I am helping more now because I can see she getting tired and worn down by it all and becoming more and more unwell and who wouldn't?

I think that the NHS can be excellent or very bad and it depends on where you live or even what department of the hospital you are under or which consultant in that hospital.

It is worrying when my daughter has a life threatening condition and that all the 'experts' we see say they do not know anything about protein C defficiency and give her the wrong level of drugs, or completely the wrong drugs altogether. Surely someone somewhere knows and she could be sent to that person?