APS Support UK News

Our 2015 Christmas cards are now on sale from our website .  We have lots of designs and hope we have something for everyone's taste as this is a great way to raise awareness of APS/Hughes syndrome as well as help sustain our charity. Thank you if you are able to support us this way.  http://www.hughes-syndrome.org/get-involved/visit-our-shop.php#xmas

We are pleased to say that our charity office has now moved and we finally have space for volunteers and another member of staff in the future.  Our new address is:  Hughes Syndrome Foundation  The Orchard  White Hart Lane  Basingstoke  Hampshire  RG21 4AF  We also have a new telephone number: 0300 323 9943. If you'd like to learn more about our new home please visit The Orchard website .

The charity sector has, understandably, come under fire in recent months for the aggressive fundraising activities adopted by larger charities. These tactics have included employing ‘chuggers’ – charity street muggers who accost potential donors on the high street – as well as direct mailing and cold calling. Rest assured this is not something the HSF has been doing or will do in the future, nor will we ever sell our mailing lists to outsourced fundraising companies, or anyone else for that matter.  Thanks to our fundraisers, subscribing members, regular donors and supporters, we are able to sustain our charity which makes it possible for us to work hard to win grants and corporate support. Without you, we wouldn’t exist and we do appreciate all the support you are able to give, even if it’s just £2 a month.

Thanks to extra funding, we are pleased to be able to share this year's annual Patients' Day with all APS/Hughes patients wherever you may be.  The funding meant we could have a professional film made of our popular event and, thanks to the hard work of volunteer David Schutt, you can view each of the presentations with their accompanying slides and images separately on our You Tube channel , as well as listen to the patient questions and answers.  You can also download a PDF of the full transcript or buy a booklet from our website for £5 plus P&P.  Next year’s date for the national Patients’ Day has been set as Wednesday 18th May 2016, so please book early as it was sold out this year.

We understand that many patients who take hydroxychloroquine under the trade name of Plaquenil have been told by their pharmacist that it has been 'discontinued'.  The charity, Lupus UK , have carried out some research and issued the following statement:  After speaking with Sanofi-Aventis Medicine's Information Department (the manufacturers of Plaquenil) we have learned that Plaquenil has now been 'de-branded' to generic but that the same formulation of the drug will be available through pharmacies if they order Hydroxychloroquine through Zentiva (the sister company to Sanofi).  If your pharmacist has any difficulty obtaining the Hydroxycloroquine with the same formula from Zentiva the product descriptions is: "HYDROXYCHLOROQUINE SULPHATE (ZENTIVA) 200MG FILM COATED" and the 'PIP number' (Product Code) is 1201730.  If for any reason they cannot find the product on their system they can ring the customer service line on 01483 505515.

We are delighted that Tracy Jallow's patient story has finally been published in the British Medical Journal.  It was a long wait, but we got there in the end!  Needless to say that the BMJ is one of the most widely read medical journals, so this will really help raise awareness of APS/Hughes syndrome.   It is a shame that Tracy had to go through much before a diagnosis was made, but we are thankful she shared her experience so that other people can, hopefully, be diagnosed more quickly.  Thanks to Dr Heidi Lempp for helping us get this published, and also Professor David D'Cruz for giving his expert opinion in the paper. Please click here to read the full article.

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 .

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...

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.