Meeting with an Mp! oh & a pic' of the newspaper article!!!

Meeting with an Mp! oh & a pic' of the newspaper article!!!

Here is a pic' of the article that went in my local paper.....I've scaled it next to a 10p....pathetic size!!!

I got told it would be a large article with the Hughes logo.....yeah....right!

Meeting with an MP on Friday to chat to him to see how he can help me raise awareness of Hughes.

If you have any suggestions to add let me know! :) I have my basic things to say & suggest! but feel free in any suggestions!! :)

Sue xx

36 Replies

oldestnewest
  • Gosh well done.

    The only thing I can think of is the cost, that may make a difference to them

    Hospital admissions for

    Pregnancy losses

    DVT,

    Heart attack,

    Stoke,

    TIA,

    Premaure births, Special baby care unit.

    Life long care for Stroke disabilities.

    Cost of care for babies who suffer brain damage.

    Their must be more,, But considering the cost of a blood test and Warfarin

    as treatment it would save millions plus loads of heartache.

    Thankyou for all you are doing for us, I must say I really appeciate it and I am sure all the others do too

    Good luch love Karen xx

  • Sorry, Good Luck

  • Hi,

    Well done on being pro active, what a fantastic idea :)

    I suggest talking about prescription charges for Anti Coagulant treatment why it isnt free to us as with such a serious condition we can not afford and put our lives at risk by not taking this medication, as with a majority of us we are diagnosed under 30 year old and this means Prescription charges for the next 35-40 years for life saving medication.

    Also like you say more awareness for doctors, medical staff and awareness to indivuals who are at higher risk, ie: symptoms so that it is in fore front of doctors mind, during pregnancy or after multiple miscarridge. making leaflets available in doctor and hospital waiting rooms, to spead the awareness for extra saucers for funding / fund raising for research, awareness for DWP / ATOS medicals for condition .

    I for one was mis diagnosed multiple times by several doctors when i even showed classic sign and symptoms.

    Good luck keep us all informed how you get on

    Well Done You xx

  • What do you consider classic signs and stmptoms of APS?

  • Sorry i ment classic signs of DVTs

  • You may like to inform him that we get all our prescription charges free in Wales..If we can get that right why can't England !

  • Good point Rhian!

    Thank you for your imput revamp2010, Daisyd.....will use them xx

  • Hi Suzi

    Wow hon you`re on a roll!! :-) :-) :-) What a star!!!! :-) :-)

    As others have said the cost financially to the NHS of treatment as opposed to a simple and relatively inexpensive blood-test to screen for APS would save so much not just financially but emotionally for all those suffering.

    I`m sure you`lle do fantastic as you usually do.

    Is Saturday the day of hughes get together at the Stanhope, i`ve got brain fog and forgotten when???

    Hope you feeling ok!?!?

    Take care gentle hugs love Sheena xxxxxxx :-) :-) :-)

  • Yes it is hun! :)

    4pm onwards! we can have a meal there if you wish & if anyone else goes!!! :) theres a free desert for after!!

    Theres a lady I know who has also just been diagnosed with Fibro :( she would love to talk to you & others as she is in a bad place with it at the mo'.

    Thank you for your usual great support :)

    I'm ok....just the usual dizzy, wobbly Sue :)

    See you Saturday! xx

  • Sounds like you are really going out there!! But...(silly me)...what is an MP ??

    Here in the states it would be MP for Military Police...lol.

    Feeling a bit goofy right now...

    Beverly

  • Hi Beverly

    MP does mean military police here too but also stands for Member of Parliament!! Elected to listen to the people, here`s hoping this one will, I`m sure our Suzi will work her magic!!

    Take care gentle hugs love Sheena xxxxxxxxxx :-) :-) :-)

  • Yes....I shall try to put him under 'the spell'!!!!!!

    Cheers Bev & Sheena xx

  • Oh yes hon 'eye of newt n wing of bat' will send my witching powers too!!! :-) :-)

    Take care gentle hugs love Sheena xxxx :-) :-) :-)

  • :) :) :) xx

  • Hi Suzy well done you :-) :-) :-) :-)

    To add to what has already been mentioned, would be to highlight further costs saved to the NHS & individual suffering if all PCT's would consider to support self testing of INR's where appropriate especially whilst better understanding from the medical profession is established :-)

    Perhaps subsidies cost of units as well as supply testing strips & lancets on prescriptions for all post code areas

    A long way of I'm sure but how more efficient would the nhs be if patients had copies of their medical notes & take ownership... so much wasted time & money is spent covering what has already been established if we need to attend a&e etc with us in control records would be far more accurate & updated & available as needed! Just a thought :-) :-) :-) Kathy xx

  • Hi Sue

    I will be asking for your autograph soon, you will be on tv next!

    I would push the lack of awareness by the general public, No one I have ever spoken too about hughes syndrome has ever heard of it, its like water off a ducks back, they have no idea how serious or horrible the illness is. Some messages are filtering through to front line nhs staff though, slowly slowly.....

    Perhaps Mr Henrick Hanssen could mention hughes syndrome in an episode of Holby, lol.

    Good luck with your meeting, "every little helps"

    garry

  • You are right Garry, I have often wondered if,via the Hughes Syndrome Foundation, one of us could arrange a meeting with the script writers of both Holby and Casualty to discuss the inclusion of APS in their programmes.

    Sue, you are amazing and actually being pro-active, I, on the other hand am much more inactive and am inspired by you!!!

    Good luck and thank you.

    Linda

  • We've already been on Casualty but it was many moons ago. Not the best episode as it featured a woman who had had multiple miscarriages, was diagnosed, had a successful pregnancy then died of a PE after the birth.

    It know it happens but a lot of people were quite upset!

  • Some good ideas there Kathy & Garry, I agree with the awareness being pushed....I feel that is my main goal tomorrow, i shall mention everything else but to get that seen as a priority I think is best , thank you Linda :) that was sweet :)

    Has it really Kate? surely that would have been the point & the best way to get people to see how important it is to be recognized with the 1st symptoms before something eg. PE happens?!!! x

  • Way to go Garry :-) :-) perhaps we could write a script & sent it to holby & casualty... can see it now patient with caps who's life they got to save! :-) :-)

  • Good point guys, how many more people know about lupus because of Greg House Md????

    I mention lupus and folks say ooooh I saw that on telly!!!

    Love n hugs sheena xxxx :-) :-) :-)

  • Wow Suzy that is fantastic, all of the above suggestions cover any that l have, l think but brain a bit sluggish today!!

    Good luck Suzy, you are really on a mission, you go girl!!

    love and hugs lesley xxx

  • Thanks Lesley :) x

  • Wow!....what a response !!! I am going to jot all I can down & ask him & tell him this has come from so many other APS patients from all over the world!!! lets see what he says to that!

    Also great idea about going on tv or asking about it to be put into a tv show....mmmmm......minds ticking over time now!!.....I actually know someone that interacts a little in tv....so I wonder?!!! :)

    Hey buds if I can do anything to raise more awareness I will do whatevers necessary!

    I hear so many real life stories on here that either makes my blood boil & sooo angry for them or breaks me down in tears for what they have had to go through......so if I can help anyone find out they have APS before its too late....I will.

    Hugs to you all, keep your ideas coming in!....you have till tonight to get them to me! xxxx :) :)

  • Hi there - I have joined this conversation late - but agree that getting any coverage or help from MPs is excellent. In Scotland we get our prescriptions for free but agree that weekly INR blood tests must cost the NHS a fortune - never mind the other side effects of stroke, pulmonary embolisms, DVT or maternity wards. Another route to go for MPs is to encourage Medical Schools to ensure that APS is in their curriculum - so maybe the education Minister?

    I have been in touch with some national papers and they have agreed to give coverage if I succeed in a organised 10 or 5k walk - so that's my aim for APS this year. Also Katie gives excellent press packs or I think if you get friends, family and local doctors to join and receive the newsletter - then it helps spread awareness.

    Good luck

  • Thanks E - I was in touch with Angela Constance MSP who was showing a lot of interesting in the miscarriage testing a couple of years ago. It might be worth getting in touch with her again as HS is on her radar already.

    Good luck with the walk :)

    Kate

  • Thank you too for your imput I shall put that forward too x

  • Great work Sue - I will email you the list of campaign points from the charity. These have now all been agreed by the trustees and Chair - Estelle Morris.

    Please do name drop Estelle as she is a Member of the House of Lords, was Education Secretary a few years ago and is well respected in the house. She is also Baroness Morris of Yardley officially.

    We must try to be focused and not too scattered in our approach - an MP will most likely want to know how to raise awareness in the medical community within their jurisdiction.

    We have already met with the Royal College of GPs but would be really interested to hear of any local initiatives to raise awareness.

    Well done you, one woman awareness campaign :) x

  • Thank you for that Kate :)

    Lol....like the title!!! xx

  • Agree with Kath 64D

  • Not to Hijack this posting but I have had a dream for many years...... (I have Guy Henrys autograph framed photo (Henrick Hanssen) I now run my own wheelchair business (since stroke & APS) My dream...... Holby, pushing a wheelchair with / without a passenger and just accidentally bump into the back of Mr HH, he turns around gives me one of his "Looks of Death" right in my eyes and says something like "would you prefer to go around me rather than through me" or you couldnt drive that thing any worse if you tried, or in Sweden we drive on the right side of the road.

    Something like that would nasty enough to make most people chuckle.

    Sorry Suzy, but as you know I am a real Holby fan, Tuesday night is the highlight of my week!

    Cheers

    Garry

  • Thanks Tim :)

    Lol...Garry, you & your Holby!!! great script tho'....hey you never know!!

  • Meeting went well :) my Mum found one of the article that was put in the local paper.......could they have got it any smaller!!!

    Showed it to MP & he says that me & him will go to the paper & have the interview together, photos & all.......within the next 2 weeks :) cool !!

    So hopefully thats the first few steps to getting more awareness out, nice chap :)

    Baby steps....developes into big steps....eventually......

  • Excellent news like you said baby steps but look how far you have come recently :-) :-) you are a star kxxx

  • Thank you Kathy :) he was a good listener & I have so much more to say to him! I'll tell him next time we meet :)

  • Sorry Suze,

    Only just picked up on this. Well done. I can see it now Suzypawz nominated for C.B.E. for her work on Hughes Awareness. I'll vote.

    I think Kate is right to suggest the official line as far as possible so the issue doesn't get bogged down in all the symptoms that we suffer as too much information can detract from the message. Succinct is usually best.

    What you have said and done so far is excellent, so don't worry too much.

    xx Chicken Assasins Mum

You may also like...