Thursday, 8 January 2015

Join us at the national Patients' Day 2015

You are warmly invited to join us at the national Patients' Day being held on the afternoon of Wednesday 13th May 2015 at St Thomas' Hospital in London.

The cost of Patients' Day is £20 for members of the Hughes Syndrome Foundation charity, which include yourself and a guest, and £40 for non-members.

If you want to learn more about this unique opportunity and reserve your place, please visit our website and register online.

Wednesday, 7 January 2015

House of Lords debate

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. 

You can either read the transcript of the debate here: 

http://www.publications.parliament.uk/pa/ld201415/ldhansrd/text/150309-0003.htm#15030931000088 

or watch the video here: 

http://www.parliamentlive.tv/Event/Index/ddb0a58f-8b9e-491a-a47c-6db1d9ea9fe4 

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.

Help end medicine poverty

Our charity is a member of the Prescription Charges Coalition who work tirelessly to help people with long-term conditions such as Hughes syndrome/APS.

The NHS prescription charge has long been a contentious issue. This charge has been abolished in Scotland, Wales and Northern Ireland, leaving patients in England alone in the UK in having to pay for their prescriptions.  Although there are many exemptions from the prescription charge, these appear illogical and unfair.


A survey by the BMJ in 2015 found that almost 90% of health professionals say prescription charges deter patients from collecting medicines, yet still the government refuses to change the system in England.

Please help medicine poverty by signing this petition.