Sticky Blood-Hughes Syndrome Support

research papers and medical records

Hi all, sorry about this, I think I may be going for most questions asked in a short period of time.

My questions this time are twofold;

1) Has anyone requested their own medical records and if so was it a huge hassle?

2) Can anyone point me in the direction of useful research papers to back up my referral request?

I am determined to get myself sorted out, I can't get the immunology referral until after I have seen an ENT for a sleep apnoea investigation but regardless of the outcome of that I want to push for the immunology referral.

My current main symptoms are horrific joint pains and fatigue with some memory issues. The fatigue is currently so bad I am starting to worry I'm going to lose my job.

17 Replies

Hi I am sure we can help you, It is simply a matter of choice regarding notes. I personally opted not to do so for the current time, as a long while back I had to make complaint for the sake of myself and children, and usually things get written about patients that are pretty inaccurate.

I decided to just move on forward and fight for better care. I am not saying I will not ever do it, but for now I am just relieved to be at all the correct hospitals with a nice GP surgery. Regarding medical papers, tell me roughly what you need, however a good starting point is the Hughes Syndrome Foundation charity website, which has lost of good resources on it, from the blood tests through to the symptoms. If you need more than that let me know. If you want to answer under here fine, or if not send me a message. I am sure others will help also. MaryF


Thank you.

One of the main things I'm looking for is research papers containing things like the symptoms olympics we had on here. Something that shows the low level, or at least not directly clotting related, symptoms that a lot of us share.

I also want to just do more background research for myself. I was largely asymptomatic for a long time but now the joint pains and fatigue have been attributed to APS by one of the GPs in my local surgery (I have been diagnosed 10 years but have shown signs for 20+ years), I feel the need to know all I can so I can fight my corner and hopefully, a little down the road, help join the fight for better care for all.


Ok: So here is that post: and have you considered any of the books on sale on the Hughes Syndrome Foundation website, plenty by Professor Hughes and also the ones by Kay Thackray. I certainly have provided lots of medical professionals with various books on behalf of my own case and that of my children. If not there are many papers out there, it is about searching - if you need a hand come back to us. MaryF


" I certainly have provided lots of medical professionals with various books on behalf of my own case and that of my children. If not there are many papers out there, it is about searching - if you need a hand come back to us."

Hi MaryF

Would it be okay to ask as to what would be the best approach when handing out a book to a clinician who is interested in the subject. But I would not wish to appear pushing the book whilst I generally have a decent relationship.

What would be the best way to do when a patient wants to send / hand the book? What shall I say..? I realize patients do this more often in the US as doctors tend to have more time over there e.g. different insurance system?

Any insights from others also most welcome...x x x


Hi Omega,

I do not understand what you are writing. Sorry. What is your purpose? Could you please be a little more at "the Point" . I know my English is not so good but this I do not "get".

Best wishes from Kerstin in Stockholm


Ha ha..sorry for being so vague..!! Must be this ghastly weather we have this morning.

Hope your weather is nice in Sweden :-) xx


I simply handed mine over at the end of a good appointment saying that I had just finished reading them, mentioning that Professor Hughes's books had been a very good read and had filled in the gaps, and perhaps the department would find them useful for other patients etc. MaryF


Thank you for your useful advice, MaryF.

It was so lovely to hear. Many thanks x x x


phoenix-- where do you live


Hi Jet, I'm in Bracknell in Berkshire. UK


I request my hospital notes a few years ago due to a compliant. You are entitled to see your notes. You have to apply in writing - a point I was told what pages I could see in actual fact you are entitles to see your entire folder.


I also requested my notes in 2007 when making a complaint

It was the only part of the complaints procedure that was easy

I simply wrote to my surgery asking for them and for a five pound fee(they can charge up to fifty) they arived about ten days later


Morning, I requested a copy of my Hospital notes, I had no problem getting them but had to pay £50.00

St Thomas's send a copy of the appointment which is lovely

If I have blood tests or appointments with local hospital,I request a copy from my Gp surgery, I think they have to give you one.

Good luck not sure about research papers.


I wish you good luck with your "fight" to feel better!

We are here for eachother to share our experiances and questions. We also learn from eachother. Ask........

Best wishes from Kerstin in Stockholm


hi kate I have bought my notes at a cost of 50 pounds 10 for admin and 40. you need to make request at your local hospital. prices vary but did not expect to pay more than 50;they hav to get permission off consultants etc....

good luck hope this helps


Hiya :)

I requested my notes from my GP surgery as I felt not everything was being written down & taken seriously & I wanted to have them before going to LBH.........I only had to pay for the old files(changed surgery & paper ones were in a filing system) it was £50 and I had to write a letter requesting them........I will say that if I had been to see a dr within the 14x days prior to asking for them I wouldn't have had to pay for them at all as apparently if they've been accessed within 14x days they're up-to-date?? I live in Scotland & there may be different policies for different areas but there was no probs getting them & they were ready for my collection within 5x days or 7x days if I wanted them posted........the GP does go through them 1st to be sure everything is there but I do believe that if there's certain things written in your medical files that the GP thinks could be detrimental to your well being they remove them before you get I say that could just be for our area not sure if that's standard practise for all areas..........I did get all mine as they do tell you on the accompanying letter "complete" or "incomplete" :)


I have now received the paperwork to request the files from two of the hospitals, now I just have to wait for payday so I can write a cheque that wont bounce all the way to the bank :-)

I had a sudden brainwave about finding research papers - I am an OU student and as such have access to the full contents of the OU library. I speculatively typed antiphospholipid syndrome into the library search engine to see what would come up and it returned over 20,000 results. Obviously I need to do some filtering and a lot of reading but there must be something useful in there. I'm not really sure what I'm looking for though. Something which sounds like me I guess.


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