Finding my daughter a good consultant

drrobert

Your daughter could ask for a referral to a different haematologist if she wishes.

Protein C deficiency is not very rare (about 1 in 500 of the Caucasian population, although many never have a thrombosis). I am a haematologist currently living abroad. Whilst working in a London teaching hospital I saw many young men and women with protein C deficiency and similar conditions.

If your daughter wishes to see another specialist to discuss her condition, she can ask her GP to refer her for a second opinion. It is not for me to recommend a specific centre, but she could ask to see someone at a teaching hospital. There are no good alternatives to warfarin yet (heparin injections work, but are not ideal for long-term use), but several new drugs are in trial and will probably become available in the next few years.

clutton_2

one way that you might speed up the "notes getting lost business" is to personally phone the consultants secretary at the hospital - once they realise there is a serious problem, and if you throw your self on their mercy, they can often shift paperwork problems quite fast. good luck

Horace

I know that the QE Hospital in Birmingham has an excellent haematology dept - no I dont work for them but know someone who has a similar condition. It is also one of the best teaching hospitals in the UK.

Loretta

drrobert wrote: »

Your daughter could ask for a referral to a different haematologist if she wishes.

Protein C deficiency is not very rare (about 1 in 500 of the Caucasian population, although many never have a thrombosis). I am a haematologist currently living abroad. Whilst working in a London teaching hospital I saw many young men and women with protein C deficiency and similar conditions.

If your daughter wishes to see another specialist to discuss her condition, she can ask her GP to refer her for a second opinion. It is not for me to recommend a specific centre, but she could ask to see someone at a teaching hospital. There are no good alternatives to warfarin yet (heparin injections work, but are not ideal for long-term use), but several new drugs are in trial and will probably become available in the next few years.

Thank you for taking the time to help

Loretta

clutton wrote: »

one way that you might speed up the "notes getting lost business" is to personally phone the consultants secretary at the hospital - once they realise there is a serious problem, and if you throw your self on their mercy, they can often shift paperwork problems quite fast. good luck

It isn't that notes have been lost it seems that no one has thought to keep her GP updated as they should. We have been told that this is 'normal' hospitals seem to live in a bubble and do not follow the guidlines. I understand that GPs keep all notes on their patients but hospitals simply do not pass them on and if someone turns up at A&E say, out of hours, they just deal with what they can see and don't check to see if the person is under anyone at the hospital or any background. You fill in a form in A&E and one of the questions is 'have you been treated at this hospital or any hospital in the past 3 years' and you kind of presume that if they ask this question they actually want to know and if the answer is yes they go and look you up but they don't. It takes a while to realise that everyone seems to work in their own little box. This is why my question on here was really is theri an 'art' to doing hospitals and doctors that we should know about.

My daughter had been with this GP for several years but I don't think she had ever been to the surgery before, she was always well and healthy, this came out of the blue and as she has no background of DVTs and had not flown long haul etc all the usual reasons he did do a brilliant job spotting this serious problem, in a few hours she could have ended up like the poor man on here who has told us his story, if this GP had not been so quick and so thorough.

I expect the GP thought it was a one off and the problem was over as he heard nothing more during the next 16 months. We did not know that hospital notes should be kept on file at the GP surgery and that we could go to him with any concerns. I knew someone kind personon here would know the procedure

Thanks for your interest

Loretta

Horace wrote: »

I know that the QE Hospital in Birmingham has an excellent haematology dept - no I dont work for them but know someone who has a similar condition. It is also one of the best teaching hospitals in the UK.

Thanks Horace I will follow that up, we are going to phone the Gp for an appointment and I will ask about that, a lead at last! I am beginning to find out how it all works

This Protein C Difficiency is not rare but has only recently, 10 years or so, been recognised. The GP we saw on Monday, although she told us she didn't know too much about it, thinks that it is going to be the 'next thing'. People have this condtion in their family and don't know until they have a DVT, either on a flight, during child birth or after an operation or being on the contraceptive pill, it is a tendency for your blood to clot and is often fatal. A simple test can find out if you have it or not and if you have it you can take precautions which can save your life. She said that GP are prescribing the Pill for 13 year old girls and no one is testing to see if they have this condition and she thinks it is going to explode at some stage, she was quite into it. We must make sure that we get the appointment with either the original GP or this one I think.

clutton_2

whenever i have worked in the health service, or been a hospital patient, it has always been standard procedure that each patient is either given a Discharge Letter (which explains the symptoms presented, treatment given, and future treatment recommended) or that this discharge letter is sent to the GP - else how will the GP know how to continue what treatment ? I would definitely contact the Secretary and get her help

Jake'sGran

I am one of those who takes Warfarin daily and will for the rest of my life. This is due to my having a mechanical heart valve i.e. plastic and metal. The blood tends to clot around this device so it is essential to keep the blood thin. Just lately my INR has been too high and then too low but I get great treatment from the pharmacist at the local hospital who 'phones me immediately if she does not like the result of the test. She then tells me what to take for the rest of the week. On the Internet you will find a list of supplements etc that your daughter cannot have, e.g. I started taking Gingko Biloba but was then told after my regular check (INR had gone up) that I can't use this supplement.

It is important for your daughter to eat a regular diet. Most unlikely but if she were to pig out on broccoli or cabbage her INR would go up. Despite this like any one else she needs a varied diet but with no sudden changes. My INR was 3.3 two weeks ago so I get a longer period before I have to have a check again - 4 weeks I think.

I think the main thing with your daughter will be to get her "regularised" so that her INR stays steady - although I admit I am not familiar with her condition. One of my neighbours who flies long distances now and again had a DVT quite some time ago and I noticed him in the anticoagulant clinic recently so he must be getting checked at intervals and perhaps on warfarin all the time.

I doubt that it would be allowed for your daughter but there is a machine you can buy to test INR levels. My hospital lady says that they are not accurate enough for her. It's interesting that the clinic I go to still uses syringes but at the heart centre I attend say their clinic is now on the finger !!!!! method.

I really hope this problem will soon be regularised so that you can feel confident she is having the best treatment.

Jake'sGran

NB - Those exclamation marks should not be there.

clutton_2

i expect those **s were instead of the word "p r i c k" in the sense of how blood is taken from the finger ....