I had to attend my local hospital for my monthly blood test yesterday and I took along a few information packs, which the Raynauds and Scleroderma Association (raynauds.org.uk) had kindly mailed to me, to distribute.
My 'hit list' included pharmacy, the rheumatology occupational therapist (who I havent seen for a few years and randomly bumped into in the corridor !so I was quick to give her a pack!), as well as the rheumatology team.
The response was amazing, from everyone ! The feedback was that the information was very useful not just for their level of understanding, but also to improve the patient's understanding and support, with such informative leaflets.
So many thanks to the associaton for putting together such great information !
As well as I would love to hear your experiences of distributing the awareness information at your medical appointments ! Is it just my local hospital in Southport, UK who are so delighted to have some information leaflets to give to their patients ?
Y'all know - I am living the dream haha x
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living-the-dream-ssc-ray
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I wrote to RSA to advise them there was no information available at the Rheumatology Clinic - I provided an address and the head of Department - the RSA never replied and I see the Consultants are still writing on pieces of paper to give to people - a lady when she came out of the Consulting room was verbally being told about Raynaud's. Shame it would have been so useful to have had a leaflet.
My first appointment with my Rheumatologist, Dr Russell, at Northwck Park Hospital, was very positve. He was very patient and kind and spent time to explain to me, in simple terms, the result of the blood test, why my GP referred me to him and what follow appointments would entail. He then gave me a few information booklets about Systemic Lupus and Underactive Thyroid, which was what my GP's blood test revealed. I saw my Rheumatologist every three months for about eight years. In that time I developed one symptom after another including Osteoarthritis, had lots of tests and medications and learnt a lot, but I really don't recall being told about the RSA. I may have read something about it in the distant past but my memory is getting worse so I wouldn't swear to not have heard or read about the association.
I discovered the RSA and this forum only a short while ago. I remember feeling as if I had struck gold. I had stumbled upon others with similar and same problems and did not feel like a hypocondriac. I keep a lot of my difficulties to myself as I feel that I may be boring my friends and family. Noone really wants to hear about someone else's illness all the time, do they? To be honest we are a complex lot and unless a fellow sufferer, who would understand.
On this forum we can moan and complain, encourage and cheer each other on, smile at some of the comments, sympathise and empathise to our hearts content. There's also some plain speaking sometimes but it's all to the good.
I think I will get some information leaflets for my GP's waiting room also. Thank you for sharing your story. Welcome!
Hi Living-the-dream! Good for you for handing the packs out. I have ordered mine as well. I was very pleasantly surprised by my local GP when I took along an info pack about Vasculitis and Behcets. He was very pleased to have it. Not all Doctors specialise in certain diseases, so it's great to make them aware. I need real support from my GP and wasn't getting it as he didn't really know what was involved. He thanked me for giving it to him, which was very nice! I also learned from the Vasculitis Foundation, that sometimes Raynauds can be mistaken for Berghers and visa versa, so am looking into that as well. I love your attitude, keep up the sense of humour, it does help I know!!
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Anyone else struggling to swallow?
hi
Here we go again at the Doctors
