Sticky Blood-Hughes Syndrome Support
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Map Your GP

Hi all, It has become apparent through my enquiries that there is a need for a thread which exchanges info about GP's with experience of APS around the country (and everywhere really). I am looking for a new GP, myself, and will list he or she here when I find one. I invite anyone who has had a good experience with a supportive GP, who now has APS experience, to recommend them here, no matter where you live. Please answer the following:

Title - Country, County(or state/province), Town

Body - Name of GP, and Name of GP Surgery/Medical Practice, Contact details if you have them

If you are uncomfortable giving this level of information in your own username, just set up a throw away account to list this info.

GP's should feel free to list themselves on this thread if they have an interest in APS.

Thanks everyone for your contributions - good luck, and I hope this helps many future sufferers...

Tags: GP; Doctor; Specialist; APS; Newly Diagnosed; Seeking; Information;

6 Replies

HI, you might wish to check this out with Kate at the actual charity, on here as Kate H, or email her directly at the charity. It is a tall order to compile a database of actual GP names, although the charity is of course always adding to the specialists available who can guide the GP's both privately accessed or via the NHS. I will also add that we never name and shame individual medical staff, but instead enhance the good aspects of care to build on that bit by bit. However of course, if somebody reads a post about an area and has a good GP in that postal code they do normally speak up about it. All the best. A lot of us also encourage our medical staff and GP's to come along to the Patient's Day at St Thomas' Hospital, although a tall order these days due to their work commitments. MaryF



The idea of a list of APS savy GPs is a good one, similar to the list of consultants on the HSF website but we cannot, as Administrators, accept people setting up 'throw away' accounts on our forum.

I will, however, put the idea to HSF of them setting up such a list on their website, as they have with the consultants.



Thanks Mary and Dave - I have been in touch with NW (I feel a bit bad saying Nagging Wife!) and have explained that I simply don't have the resources to do this at the moment, but it is something planned for in the future

However, I think it is an excellent start for a project but do agree we mustn't have anything written here that 'names and shames' any medical staff.

No doubt this will become a bit too much for one person, but let's see how it goes.

Dave is correct though, anonymous accounts aren't really acceptable. If nothing negative is being said, it shouldn't really be a problem I think?


Hi Kate, and Mary, and Dave :)

1) Please don't worry about calling me NaggingWife - you'll know why I gave myself that screen name if you ever meet my husband (poor man)...;) Married 27 years and he's convinced that the stress of being married to me is what has set off his diseases... (I'm a rather forceful personality) - but you can call me just plain 'Nag' and I don't mind!

2) Re the note about "throw-away accts" I've only suggested something that would give certain people comfort-levels to divulge info. It's a generational thing. I put it all out there and don't give a hoot who might guess who I am; my kids post what they are doing and where they are 24/7. My Mother, and my Mother & Father-in-law (due to their generation's general unease with technology), are inherently distrustful of anything being put on the internet which in some way might identify them to the point where they have a panic attack if the kids post a photo of them online... They would absolutely not identify what town they live in. Most of your participants will be absolutely fine to divulge where they live (by giving up GP location), others will see it as too much for their comfort levels, and might wish to provide helpful info, but not at the risk of being "tracked" as they see it. These will be few and far between. If anyone posts anything unsuitable - then simply remove it. Most people just wouldn't go to the trouble of setting up another acct. just for one post, but it may be the only way that some would be happy to contribute what could be potentially helpful information. Let's see how it goes...


OK Nag:) We need people with energy to get things going!

I agree with your point about the generational difference in attitudes to technology. The young 'uns aren't really experiencing life unless they are posting pictures and reports every few hours, while the older people are still very distrustful of technology.

It personally doesn't bother me if people know which town I live in and it will be apparent once the GP's details are up there.

Let's hope the road map can start being built :)

1 like

Have just added the first waypoint. See post entitled "GP Map - UK, Wilts, Salisbury"


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