We would like to bring your attention to the first ever short debate held in the House of Lords on antiphospholipid (Hughes) syndrome.
The question posed by Baroness Drake was: “what actions are Her Majesty’s Government taking to raise awareness of the autoimmune condition antiphospholipid syndrome (APS) amongst general practitioners and throughout the National Health Service”.
She was supported by our charity’s wonderful Chair, Baroness Estelle Morris, with Lord Hunt arguing for and Earl Howe against.
Please note that this Health Unlocked forum got a mention too - and thank you to everyone who voted in the GP awareness poll that allowed us to gather this information
You can either read the transcript of the debate here:
The debate was held on Monday 9th March 2015 at 8.02 pm so, if you are watching the video, please drag the timer slide to 8.02.27 to find the beginning.
Needless to say, we are delighted that APS/Hughes is on the agenda at the Lords, and one of the outcome of the debate is that the government now supports the need for a UK prevalence study.
We will continue to campaign for earlier testing for women with miscarriage, to have all the tests for antiphospholipid antibodies included in thrombophilia screens in every hospital in the UK, and testing for anyone under the age of 50 who has a stroke, DVT or heart attack.
We hope you are as pleased with this breakthrough as we are, and thank you for supporting our little charity.
Thank you for popping this piece of excellent and upbeat news on here, I got quite excited reading this a couple of nights back, onwards and upwards as they say. MaryF
A pleasure Mary. It's been a rather busy time here gathering data etc but well worth it. I think Estelle's contribution was brilliant and very passionate - we are very lucky to have such a public figure as Chair.
Onwards and upwards indeed, although not much will happen now until after the general election. But our profile has definitely been raised and we will continue to campaign
And we will continue to drive traffic to the forum and also the charity with informed and best placed responses and community. I would raise a glass, but am currently on a strict cleanse! MaryF
I congratulate all those involved in having the matter raised in the Lords.
That said, I was disappointed to see so few remained in the chamber for the debate. I was also disappoinred with Earl Howe's dismissal of the suggestion that there was a lack of awareness in the medical community, quote "The noble Baroness, Lady Morris, said that APS is not included in GP curricula. I understand that the Royal College of General Practitioners curriculum covers thromboembolic disease, which would include the understanding of predisposing factors for autoimmune conditions such as APS, so GPs should be sufficiently informed about the condition. NHS England assures me that APS is also widely recognised in general medicine, neurology, haematology and obstetrics."
If that is the case, how come my experience, which I am sure is not untypical amongst us, is that I am constantly being told at hospitals, when I mention APS, that they have never heard of it. How come there is no specialist within 90-100 miles of where I live.
It was a big step forward getting APS raised in the Lords, but clearly there is still much to be done.
Yes, Tim, I felt there was a lot of political flanneling by the opposition. I'm not sure where NHS England got its data from, but we can take it up with them in the future.
There is much to be done but, as Baroness Drake's husband told me, it's really rare to get a bespoke medical motion in parliament so at least we have managed that step.
The fact that the government is supporting a prevalence study is hugely important and we will not miss this opportunity
Not taken that way at all Tim, and thanks for commenting. You are clearly suffering from a lack of medical specialists where you live and you are right to speak up. Your comments can help our campaigning in the future
Out of interest, where are you based? If you don't feel comfortable saying publicly, please do email me on kate.hindle@hughes-syndrome.org.
I agree with APsnotFab. I was her age also when I knew something was wrong with me pointing to APS though I did not know at that time it was APS.
A wellknown Rheumatologist here in Sweden told me around 2006 (I suppose I was interesting with all my antibodies and also is very high titres all the time.) that there are two sorts of APS. One sort when you are younger and another at an older age.
That's interesting Kerstin - I must admit I've never heard of a 'younger and older' form of APS but then much research is still needed. Thanks for your input
Thanks APSNotFab - I've replied to you on FB but just to reiterate ... totally agree with you about the age thing but unfortunately we're up against 'health economics'! Under 50 is considered 'young' - when I became manager at the charity 9 years ago, it was 45! (I wish!)
Sadly there are too many strokes in the over 50s to warrant the NHS being able to afford to test - the fact that they don't do it in the 'young' category is bad enough. I do agree with you though and think anyone with a stroke, DVT or heart attack should be tested, but apparently this is unrealistic.
Am with you on your thoughts about the general election. However, I believe that we have to create our own strategy for educating the medical profession as well as raising the profile of APS in parliament. Lots to be done, but together we can do this.
Thanks to all you, Mary, Dave and the administrators for all you do on this forum to help us go forward
Thanks Cushions. It can be really frustrating for all us patients - the first GP I saw when I was diagnosed in 2004 said "APS isn't that something to do with my car?". I think she was joking about ABS but she really hadn't heard of it. However, to be fair to her, she was very willing to learn along with me and she always listened.
Thx Kateh makes me feel a little better I'm going to push to get some help as I am worn out with it all I was rushed to hospital last week with stroke symptoms, and having various other test maybe my gp will do something now.x
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