Lack of knowledge and awareness of APS amongst the medical profession. Region-Northwest of England

Hello everyone,

I was diagnosed with APS in 2007 following 3 DVTs and a bilateral Pulmonary Emobolism. My long term medication consists of Warfarin and 40mg Simvastatin daily. My INR range is between 3-4 but very rarely meets this reading despite weekly blood tests. These tests are made up of venous samples and then sent to the lab as opposed to using Coagucheck XS machines as the latter gave me highly inaccurate readings.

I have been under various Rheumatologists, General Physicians and Haematologists and am constantly replacing these well-meaning people because of their total lack of understanding about APS and its various manifestations. I have a great relationship with my current Haematologist who manages my INR and I see him every 4 months or so. However, nobody seems to be able to manage my general and deteriorating well being because of total lack of general knowledge in this field.

Due to the onset of recent neurological issues, including cluster migraines, loss of memory and general slowness of thought process, I want to either be referred to a Neurologist in the Northwest or alternatively be referred to St. Thomas's Hospital. Relating to the latter, please could someone give me contact details or indded if anyone has any comments re the above, please let me know.

Very many thanks. Paul

[MaryF Administrator]

Hi there, some neurologists do have knowledge but in general you would be better off with a rheumatology/haematology team, and at this point in time you would be best off being referred to St Thomas'. In the future in APS Utopia... maybe we will have several people in each area who know what to do - but as you have found out, this is currently not the case. Here is where they need to be referring you, and the sooner the better:

guysandstthomas.nhs.uk/our-...

I literally had to move mountains to be referred there, but I chipped away, and at the same time I saw Professor Hughes privately which indeed helped remove some of those NHS huffy blocks. Let us know how you get on with this.

All the best.

Mary F x

[Hidden in reply to MaryF]

Thanks Mary. Really appreciate your swift response

Pxx

[MrsBL]

I see Dr Martin at Leeds and he seems to be ver knowledgable about APS and even though I have only met one if his team up to now this lady was very good too. I don't have a separate Heamotologist as ADR Martins team deal with it all. Dr Martins appointments can take a few weeks to get on the NHS but it is very reasonable to see him privately at The Spire Hospital in the first instance.

Best wishes

D x

[MaryF Administrator in reply to MrsBL]

Great Info, there was a doctor in Edinburgh who moved down to Leeds not that long ago, and this is great news: and is that his first or second name?

[MrsBL]

Dr Martin trained with Prof Hughes in the early days and i think that why he is more understanding.

Dx