Sticky Blood-Hughes Syndrome Support
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Self Referral to see Prof Hughes

Hi. I am going to self refer to see Prof Hughes, but would like to know if : -

1. Can I ask for all records, notes, lab results and scan from MRI on brain and could they refuse?

2. Would I need to put this in writing to each hospital dept?

3. Is there an admin charge for each dept?

4. Has anyone encountered any problems with doing this?

5. I have not had an apt yet for a neurologist although the MRI scan was done in April and showed ' White scattered intensities in parts of the brain plus fluid'. Would it be frowned upon do you think to ask for the scan information before being seen by the neurologist?

I am feeling dizzy most days and losing my balance (falling to the side) and am due to have an hearing test in Aug ( 2 different noises in my left ear and not hearing with well - my partner calls it 'selective hearing'!!!)

My eyesight isn't good and feels like it is getting worse (sometimes feels like there is an halo around objects and partner says I look constantly tired and I am most of the time's).

Also I have had various blood tests (positive 4 times in the last couple of years for 'Cardiolipin M' - (high titers), but Thyroid, B6 or 12, not checked. I know that having other tests done privately can be costly, but I am a little worried to go and ask my G.P if I can have these on the NHS (I know this is daft thinking like this)

I have asked to have my urine checked again due to persistent blood and protein showing (a couple of months ago my urine was dip tested and showed protein and blood, told it was possibly a UTI, but when it came back it had showed nothing. No explanation given). Worried that other organs are effected and that before I get to see an NHS doctor something bad will happen. I keep thinking that staying with the NHS for a definite outcome will be sooner rather than later, but I know now this isn't the case, so privately I'm going.

I will contact the hospital tomorrow once I know what to ask for. Is there a secretary who it would be best asking for please?

Thank you to everyone in advance.

Kind Regards and hugs.

Bernie x

12 Replies

I have never done this myself, but obviously had test results for bloods and things from consultants and also from GP's. I suggest you write swiftly, do it by email marked for each consultant using secretary's email address, explain costs are tight, if they say no they may say they can be contacted by the hospital you are going to. It is worth asking, but in view of how slowly paperwork takes place and the lack of secretarial support these days in the NHS I would start writing sooner rather than later. Best of luck, maybe others will have done this already. MaryF


Thanks Mary. I have started the process with one hospital dept. Will do the rest over the next day or soon. Bernie x


Hi I have read a little what has been said before. Also I have answered your questions earlier. I think you have got APS. Now you are going to see an APS-doctor. Very good!!! You do not give up on yourself. Good! The most important thing is now that you get a doctor that understands what you are going through. The TIAs do not always show up on MRI. The neurologists are not the best doctors on this illness.They do not understand sticky blood.

How wonderful if you could speak to prof Hughes or another of his collegues. I think you must do this as soon as possible because you are not on any coagulation drug. Are you?

Both eyes and ears and brain were involved when I had my TIAs before I started warfarin.

Sorry i can not help you with the paperwork as I live in Sweden.

I have all my 10 fingers crossed for you to find an APS-doctor soon!



Thanks Kirstin. No I am not on any medication. Eyes are changing all the time (2 lots of prescriptions for glasses in the last year and a half, noises in ears plus some deafness). I shall call the hospital tomorrow.

The NHS doctors I have seen so far don't know a lot about APS and it is extremely frustrating. So hopefully I can see Prof Hughes or one of his colleague's soon.

Kind Regards

Bernie x


You have formal rights, you might like to google "Acces to Medical Records" for wider information, as well as the NHS link There may be costs, though you might be able to argue that there should not be applied if you talk to consultant secretaries rather than the person responsible for data protection applications etc.

You might find it helpful to have chat with Prog Hughes secretary about the timetable and what he might wish to see by way of background. It used to take a while to get an appointment and knowing how long may mean you don't have to panic to get all the information.

Good luck with it.


Thank Tim, this a great help, I'm going to look at this straight away and speak to the relevant secretaries tomorrow.

Kind Regards



I requested and got my whole medical records it cost me £50.00

I believe you are entitled to a copy of blood results from Gp.


Thanks daisy d. Is that all your records from one dept?

I shall ask my G.P for the last blood test results if they have been sent them.

Hope all is well.


Bernie x


If all your records are at one hospital you can go the freedom of information route and contact the department that deals with medical records for that Hospital and ask for all your records, scans, tests whatever to be sent to you and they will charge you one fee.

If it is a number of hospitals I'd start by going the consultant secretary route first as it would be cheaper.


Thank you very much APsnot Fab. Most are at the same hospital but different departments. I shall start the ball rolling tomorrow. I will also contact the hospital where Prof Hughes and colleagues are to get an appointment. I can't wait any longer for a yes or no, so taking matters to people who can give me that answer.


Your GP should have a copy of all your notes and for a charge (£10) you can see them all with a member of staff present (they do have a month or so grace to show them though!) - and for a charge (max £50) you can have a copy of them all - these should include all blood test results. They may be difficult to read (I've worked for a GP practice for nearly 8 years - and can't read the majority of blood test results) but you are entitled. If you go and see Prof Hughes - your own GP should send anything relevant - specifically if he/she refers you! Best of luck. (I too am told I have selected hearing and also recently my eyes have got 'issues' - but I have been referred separately for this - and am under the Queen Victoria in East Grinstead - which luckily for me is renowned for eye problems. They are not yet aware I have been diagnosed, but I see them next month - so will discuss this with them).


Thank you Chrissybell. I have an apt with my G.P next week so will discuss then. I will take a letter into my hospitals health records dept tomorrow also. All the best and good luck x


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