Anyone know a GP in Salisbury who has APS experience?

[NaggingWife]

We have recently moved to Salisbury, but simultaneously my husband was found to have Lupus Anticoagulant antibodies, following more than one occasion of multiple pulmonary emboli and various other health dramas over the years. Our existing GP where we formerly lived didn't know anything at all about APS, so as we have to move surgeries anyway, we want to know if anyone knows of a specific GP in Salisbury who has APS experience. We can see from the Hughes Syndrome website that there is a Rheumatologist at SDH who knows about APS, but there isn't a list for GP's. As my husband has had several really close calls over the years (now that we know what he has) with what COULD easily have been evolving into CAPS events, (and these were dismissed by various GP's who didn't seem to think there was much wrong with him at all), we really want to make sure that any GP we register with knows what risks he faces!

[MaryF Administrator]

HI, please do look at the list of specialists nearest to you, as you need somebody probably to help the GP: hughes-syndrome.org/self-he...

MaryF

[NaggingWife in reply to MaryF]

Thanks Mary, but as the GP has been unwilling to refer to one of the specialists: "You have a Haematologist and ANY Haematologist can deal with this, you don't need a specialist in this field". Thus we are looking for a GP who has experience of supporting patient's with APS! As an example, the GP never even phoned us with the results of the blood test actually diagnosing my husband being positive with Lupus Anti-coagulant (he never even looked at the results - they were just filed and the surgery just automatically posted us a copy), and he seemed confused when my husband made an appointment to talk about the results!!! He had to admit that I knew more about APS than he did, and didn't know why we would be concerned. It would really be helpful if the Foundation set up a GP list for those who have experience of supporting APS patients in the same way as the Specialist list. Otherwise, sometimes you just can't get a referral!

[MaryF Administrator in reply to NaggingWife]

I think at GP level, for now it will have to be local knowledge from other members. MaryF

[Hidden]

The Foundation simply doesn't have the resources to start a GP register at the moment, but it is something we'd like to do in the future, along with the creation of a GP learning module.

However, as usual, it all depends on funding and we are seeking grants for expansion at the moment. If these are successful, we'd very much like to combine local support groups with GP education.

In the meantime, I'm afraid that you will either have to rely on someone with local knowledge replying on her as Mary mentioned, or change your current GP so they will allow you to be referred to a local specialist.

It does seem a bit strange of your GP to absolutely refuse a referral in your local area when they have no knowledge of APS at all.

You will see on the recent poll that only around 50% of patients' GPs had heard of APS, so there is a lot of work to do!

I hope someone will reply to you on here

[NaggingWife in reply to Hidden]

Thanks Kate, I do appreciate that it will be a local person who will hopefully provide the knowledge, but I think I am going to start a thread on this forum for people to declare (even if they chose to do so by setting up another anonymous account), who their own GP is and location/surgery details. We can then build up a roadmap of GP's who are dealing with APS patients, and see where there are economies of scale to be had (eg. if there is a newly diagnosed APS patient in an area, they know that Dr. Bloggs in their town already has APS patients, and might be a good GP to seek out). That way the charity doesn't have to commit resources. With regard to our own experience, I just don't think that he understood that not every Haematologist is going to have a lot of experience with APS, and couldn't see why we would ask to seek out someone who has... It was just another symptom of how little he understood about the significance of the results...

[Hidden in reply to NaggingWife]

A great idea NW - it would be brilliant if you could do this as this means the charity could always use this as a pilot showing the need for a such a project - very crucial in today's funding world.

Ideally I'd like to tie it in with the local support group network we are planning - it would be one of the focuses for such groups, but if there were already something in place, it would be even better to build on.

Eventually, we are planning a GP learning module but this will have to be some time in the future - but hopefully not too long.

Good luck with the roadmap and thank you for helping in such a constructive way

[NaggingWife in reply to Hidden]

Hi Kate, just a quick update - I've written to every GP surgery (NHS not private) in Salisbury asking if any of their GP's has a particular interest in, or experience of, APS. So far not a one has any knowledge of it other than a general "yeah I could treat you, but no I don't really know a lot" kind of response. Some have said that they'd be delighted to take our family on in a "we'll take every patient that we can get" kind of way, but I'm not surprised that I'm not finding a depth of experience. When I find a keener who actually WANTS to meet hubbie and relishes the challenge, I'll know that I have the right one...

[Hidden in reply to NaggingWife]

Thanks for the update Nag. Very interesting that not one has responded in a very positive way. It may be an idea to find one that is already treating APS patients - not sure if that's something you've asked? Then we could try and persuade them to go on one of the GP courses?

If you'd like to have a conversation about this, please feel free to either ring me at the charity: 0207 188 8217 or drop me an email there: [e-mail].

I think your empirical research has already unearthed something that needs addressing

[NaggingWife in reply to Hidden]

Hi Kate, that is exactly the question which I posed.

When I got the tepid replies of -"oh, we have no experience of APS & we're just generalists, so it's the specialists at the hospital are the ones who will be dealing with you - feel free to register with our surgery", I went back with "you do realise that the GP that we register with will need to do their own research into APS so that they can understand what a CAPS Event is, and why even minor symptoms can signal a potentially fatal event, is there a GP in your surgery who wants to take on this task of learning more about the syndrome?" you could hear the crickets chirruping... silence... not one response to say yes, Dr. X would be prepared to learn more about APS to ensure that they give appropriate treatment... Not much use when you go in to the surgery wondering if you have the flu or if it's something worse, and they just send you home to "rest & drink plenty of fluids".... rather than ruling out complications. What do they think - you're going to be able to get a specialist consultation on demand? It would mean going to A&E for no good reason, JUST to get access to a Consultant...

There is definitely a need to do GP outreach to ensure that a) they have easy access to appropriate information, and b) to seek out those willing to learn about more APS so that we can begin to waymark them.

[NaggingWife]

For an update, see my post entitled "GP Map - UK, Wilts, Salisbury"