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Sticky Blood-Hughes Syndrome Support
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Need advise on moving doctors

Hi, I'm moving house in the new year and with APS and long term warfrin I'm worried about what to do what GP to look out for. How does the INR clinic work will I have to go to the hospital until they have registered me.... Nervous about getting the right understanding GP.

Any advice?

MJ x

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I may be wrong but the foundation may have lists of GPs that have been recommended.

Or maybe you could give us an idea where you are and somebody in your area may know a good one.

I imagine you would need to register quickly to be referred to the warfarin clinic. Have you thought of self testing, that way you could test yourself until you find a good GP. Hopefully if you have positive bloods continuing your protocol should not be too hard.

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As long as you have your warfarin card you can turn up anywhere and have your bloods taken - they then just have to send the sample off with the card to their particular hospital warfarin clinic. Your new GP should know which one is local to them. Mine is about 20 miles away from my GP but I never have to visit them x

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Would'nt your current GP be the appropriate individual to refer you to an MD whom he has worked with before in your new area? I believe this site is currently compiling a referral list of APS MD's, but I do not believe it is finished quite yet. I would put out a "calling all APS patients" query and state where you live. I'll bet you get some replys from this site. Good luck!

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It does not work like that in the UK for GP's. Its up to the patient to register with their own GP so finding one that is suitable can be a bit of a lottery. Many GP's now have good websites and often put up GP CV's which help with sifting through what they specialise in from the point of view of first base port of call and where their sympathies lie.

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Thanks for the correction APsnot. Again. I'm learning the UK system slowly but surely thanks to you. Sometimes the hospital has a referral service for their MD's on staff. Is that true in the UK? Perhaps that could be a resource for MJ. Also, I wondered if there is an organization of all medical people similar to the American Medical Association which could be a resource for MJ? MJ could call the hospital nearest to where he/she is moving closest and ask if they have a referral service for their hospital MD's on staff.

I have the feeling the systems are so vastly different that my limited knowledge of the UK system hinders me from any suggestion. In the US you can get assigned to an MD by your insurance company depending upon what you bought. (You get what you pay for).Or word of mouth. Or most hospitals have a referral service so that if your looking for a specialist they then would give you his CV and answer any questions you may have about the MD. Like has he ever been sued and lost? It costs $6 to get that malpractice information. All doctors of any kind that want to practice in the States must register with the USDB / the United States Data Bank. That stops bad doctors from hopping countries or states. Most lay people are unaware of it. But it is in place and it works!

I wish I could offer something more, but my knowledge of the UK system is very, very limited.

Thanks again Apsnot for the correction and the knowledge.

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In the UK you have a primary GP where you go as your first port of call. This Doctor looks after your general health and when there is something that requires the knowledge and treatment of a specialist you will be referred on to them by the GP. You can suggest a name or ask to be referred to a certain person or Hospital but this is not always accommodated. If the person or Hospital is in your local area it is usually agreed but if it is out of area it would have to be agreed by the local PCT who oversea the GP funding. They may well not allow certain treatment, drugs etc. The problem with this is that it tends to be a bit of a postcode lottery as some PCT's may allow something that other PCT's will not. With the cut backs in the NHS however, most requests are becoming pretty equal across the board now.

People can pay to go privately to see a specialist (Consultant), this may be with their own money or through an insurance company scheme. If with their own money they can see who they like but would probably still need a referral from a GP just as etiquette but some Doctors will see you without. If its through an insurance company the Doctor will need to be registered and each insurance company may have their own rules about how much they will pay depending on what scheme you are signed up to.

The BMA are not allowed to recommend a particular doctor.

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The systems are alike in that ones General Practitioner is the coordinator of a case. If a case requires specialty care he/she either refers to the patient's choice or generally has someone he has worked with before, thereby having a report with him to begin. Any major case should have a second opinion and the GP would recommend on the same basis. Your choice or his. If neither have a particular person in mind one would go to the referral service in the hospital or the professional staff/credentialing office and they would present (CV) as many choices as you like but ethically would not favor one. They can say Dr. Nobody performed this procedure 2000 times and had 2 failures and Dr. Somebody performed this procedure 100 times with 0 failures. They are supposed to try not to make up your mind. Only provide you with enough information for you to make a choice. Most hospitals in this area take a "team" approach. Now our local hospital has Skype access to all doctors on Mayo Clinic Staff and many consults take place that way. They doubled their doctors. Also, insurance is similar in that you get what you pay for in a very precise contract that they will pay for exactly this or that and meds or no meds. There are just hundreds of plans. I think scheme and plan are the same here describing what you pay for. If you buy lousy coverage that's precisely what you receive. Then there are plans that pay 100% and are very expensive. Generally, plans pay 80% of everything,

Thanks again for the lesson. I appreciate it greatly. You are most generous with your knowledge and I thank you for sharing it with me.

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Jade I bought my own coaguchek xs but my GP has told me that because of having APS they give false readings so they can't reply on it so that was a waste of £300! I'm moving to Bicester in Oxfordshire.

Thing is because I'm in full time work I need somewhere to take my blood out of the normal 9-5 hours otherwise I have no way of finding a new jobs that will take me on.

What's an MD?

Thanks for the advise

MJ x

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AN MD is the American term for a Doctor.

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I have heard this said about the coaguchek, I believe Roche won't say it is accurate. 2 of my GPs have accepted that it is OK to use and Prof Hughes was the first to tell me to get a machine in 2004. I have self checked and altered my own doses since. The prof checked with me again in November if I was still using the machine and confirmed he thinks its the right way to go.

Maybe at another practice you might get backing to use it. I personally could not bare to think of life without it.

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St Thomas suggested self-testing which I have been doing for four years and my GP and warfarin clinic support this. I only have to go twice a year to have my machine checked against theirs.

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I wish you luck with your new GP practice, and I do wonder if some of the nurses at the INR clinic might be familiar with certain GP practices feeding patients in etc and if that would be line of possible local communication. Mary F x

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Hi MLJC

I live in North Oxfordshire (Banbury) whilst I don't know any GPs in the Bicester area I do know that the John Radcliffe is where all my bloods are sent after being taken in my GP surgery (they contracted out and closed the Banbury path lab for out patients years ago!). Having been through all the Haematologists and Rheumatologists at the JR (I don't have anything good to say about them, so I shall say nothing more!) I now attend APS clinic @ Guy's Hospital every 3 months and have contact details so I can ask them for advice or help in between visits.

All the best

Amanda XX

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Welshexile I have lived in Banbury all my life but moved to Lincolnshire last year, now I'm moving back again! Never thought I would say that. What GP do you go to in Banbury? I'm going to email St Thomas and ask for some advice me thinks. Good to know someone is close by. We should have an oxfordshire APS meeting some time! x

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