Student Nurse with Hughes

Keep trying to spread the word about Hughes on my clinical placement but as yet haven't spoken to one health professional who has ever heard of it. But am in the Eye Clinic/Theatre/Day Unit so perhaps Haemotology department may have heard of it, I would certainly hope so!!!!

The only upside was my dictionary from the RCN does have Hughes Syndrome/Antiphospholipid Syndrome in it.

12 Replies

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  • Thank goodness you are spreading the word, hearing this from one on the inside, gives some explanation to why often the public have to provide so much information themselves or at times are so disbelieved. Good on you. Mary F, lets hope that haematology hits the jack pot.!

  • I also am a staff nurse, and I do believe what you are saying because probably in my experience, only about 10% of qualified staff seem to what what APS is.

  • Keep explaining and getting them to know and understand it, the more the better!! When I began working as a nurse in our emergency department (your A&E), few knew about it and some had misinformation on it. I continue to talk about it and to educate people.

  • Hi student nurse

    welcome and glad you found us. sorry you have this illness.

    Glad though that you are all in the medical profession spreading the word, all the blank looks make sense now!! Hopefully your haematologist should know. My rheumy nurse hadn't a clue, said she be hitting the net for info!!!

    Hope you feeling well today.

    Take care gentle hugs sheena xxxxx :-) :-) :-)

  • This is awful! I am willing to take leaflets/ posters to local Hospital and GP surgeries. If we all did that and put them up that would be a start. Perhaps Kate could produce a poster for us?

    We (FibroAction) are working with the Patients Association to produce a leaflet for patients to take to their GP's to explain Fibro. I think there is the same need for Hughes. Perhaps when it is finished and we have done the ground work I can help Kate with one for Hughes. At least then there will be a consistent message getting from Patients to medical professionals.

    Heavens there is soooo much work to do isn't there?

  • Hi there student nurse

    Well done you. I was a paediatric physio until I had to give up work because of Hughes. But in the middle of November I have been given a platform to talk to 100 physios/OTs/ speech therapists about Hughes. It is a great opportunity which I will grasp with both hands, but I find it scarey! They want me to use powerpoint which I have never done before!!!! I find professionals harder than lay people. Pray it is not a low INR day!!!

    Take care.

  • Hi London lass

    Good luck with your talk, Lots of admiration for you havin the guts to talk to all those professionals. Hope the inr doesn't play up!!

    Good on you!!

    Take care gentle hugs sheena xxxxx jessielou xxxxx :-) :-) :-)

  • Hi London lass

    good luck with the presentation and i hope it makes a diffrence.

    paddy

  • Hi Student Nurse

    Thanks for keeping on raising awareness of Hughes in the workplace - an uphill battle but thanks for doing it!

    The Hughes Syndrome Foundation has already produced leaflets and flyers for health professionals. In 2007 we did a national campaign and sent a series of five leaflets and a flyer to all GP practices in England - there was over 20,000 and we managed this by funding from the National Lottery.

    We have now received further funding from the Garfield Weston Foundation and are working on the best way to raise awareness with front line hospital staff. We will be using Binleys - the health sector information provider to do this but are looking at the best ways to do so.

    Do you have any ideas on this Student Nurse? We're looking at e-shots or leaflets but, as a healthcare professional, how can we best raise awareness amongst hospital staff?

    Thanks again :)

  • Well done its good that everyone is spreading the word

    I wrote several letters saying I had been wrongly diagnosed and with a list of symptoms that the gp's had missed I was so pissed off one day,

    I got busy on the Computer and along with the symptoms of Hughes from the foundation..sent one out to every Gp's surgery in the phone book.in my area ? about 30.

    I didn't put my name I just let think t I could be one of their patients

    I did have an answer to one of the letters I had sent to the ENT consultant

    Who I gave my hospital number and name he must have checked my notes beacause he said that although my appointment had been so many years ago he would now be more aware of Hughes syndrome.

    I felt a little better after doing it. although I think I would get more publicity if I sued my neurologist, for not beliving in Hughes syndrome. Thinking I just

    had epilepsy for about 15 yrs,

    Love Karen xx

  • Welcome student nurse, Well done Student Nurse this is great news you keep going and seeing if you can get through, =even if you get through to one doc you will make all the diffrence.

    Paddy

  • Wow thanks for your comments. I did speak to a Staff Nurse who had heard of Hughes because a friend had had multiple miscarriages, so there was a glimmer of hope.

    I think that health professionals need to be told about Hughes when they are being trained before they are qualified.

    After listening to a Consultant and GP talking yesterday I honestly think if I had locked them in a room and made them listen to me explain what Hughes is, the symptoms, etc. they still wouldn't have taken any notice. Most of them (not all of them my GP and thankfully my Obstetrician were fantastic) are so 'up their own backsides' unless you are talking about their 'speciality' they aren't interested.

    I still think that unfortunately we have to be our own advocates. We need to push and push to get that diagnosis, to get the treatment we need and to make people aware of Hughes/APS. It shouldn't be like that but because of the nature of our illness it can be so easily not diagnosed or misdiagnosed.

    In my training it seems that if anything is in the media we talk about it in every lecture, regardless of the subject of that lecture! Maybe headlines in the newspapers showing how tax payers money is being wasted on patients with Hughes/APS who are being misdiagnosed would give them something to talk about!! I say that rather tongue in cheek but......

    I was tested for APS in 1999 after I lost my son, but apart from injecting heparin when pregnant I have never been to see a specalist or had any follow-up on the fact I have APS.

    Best wishes to you all :-)

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