I'm not going nuts!

[RabbitMum_1965]

I need advice on what I should do and hope someone can help.

I was at a dr's appointment a few weeks ago where they left my notes up. It was set on the blood test section and I saw that I'd been tested for rheumatology factor (once) and anti-dna (3-4 times). The dr was going through them and they were all within norms. I know what rheumatology factor is but not anti-dna so because they were normal, I didn't ask about them.

I looked up anti-dna when I got home, which resulted in a light bulb moment.

I have a history of miscarriage, pre-eclampsia and prem births. I also have a livedo reticularis rash on my thighs, which I've had since childhood. I was put on aspirin for my last pregnancy. I get a butterfly facial rash every now and then and awful headaches, for which I take herbal remedies.

I asked for a copy of the bloods but they won't give them, saying they don't have them!!

I remember someone here saying that there was a Lupus private clinic somewhere in England. Where is it and how much does it cost to get seen there? I saw a private physio recently; I showed him images of my cervical spine / head where there were white patches. He said they were probably areas of inflammation that had scarred. Can the nhs remove blood reports from your online medical notes?

[BonnyB]

I asked my gp surgery what's on my online medical notes. The receptionist said everything. I have took my ID in I get logged on to the system. Just waiting for that now as receptionist said can take a week or two.She also said that ypu can log on through nhs to see your medical file but that won't show everything without doing all the above with gp. I'll let you know once I'm sorted x

[sarahsch]

Hi,This link explains how to access your NHS medical records.

nhs.uk/using-the-nhs/about-...

Where it talks about asking the GP, ask at reception not the Dr. They should be set-up to handle requests. You can point to the NHS guidance.

If they decline ask on what grounds they are witholding - there are only limited reasons they can do this. If things start getting akward, ask if they would prefer you to put your request in writing so they can make a formal response.

In short be polite but firm, assertive, & persistent.

There are a number of large hospitals with private lupus & related conditions clinics, but you might be thinking of the London Lupus Centre at London Bridge. I have never been. Others are better placed to comment here.

Please be aware there are a number of connective tissue diseases (CTD) apart from lupus, and other conditions that can mimic it. It is often a long journey to get diagnosis. It might be best to try & access treatment in the first instance.

Sarah x

[ancoats23]

I think not being able to get your results is incompetence or laziness rather than anything sinister. I get results from the Trust's app which is really useful. Try for an NHS referral first - at most private clinics you will see the same person and pay £250+

[PositiveT]

Hi you should be able to get your results. It can take a little while as the consultants don't have the facility to print them off. It all has to go through the records department. So do go to your GP and follow BonnyB' s suggestion. I have needed to access my records for employment reasons and it took a long time. So it might be worth booking with the private Lupus consultant if you can. Best of luck and sending positive thoughts to you.🌻

[dg70]

I. Guessing you are not with a gp where you can download test results etc.. with mine I can and it also alerts me when test results are in. If your bloods were done on the NHS you should be able to ask your gp to email or print them for you or find out if you can download them via your gp online. If you have tests privately you will not be able to access them apart from asking your consultant to send you a copy. Private is the way most of us go for initial diagnosis. You can go back to nhs later. Do your research and find the best place near you to go that has rhuematologists that are specialist in autoimmune. Lupus uk has a lot of info which helps and helplines to help you make decisions etc.

[RabbitMum_1965]

Thank you for replies and advice. I requested the results through the hospital but will also try the GP. I had a hospital appointment for my arthritis yesterday, when I asked - can you see my anti0dna bloods? He said 'yes', so they're still there, thankfully. If the GP says he can't see them, I'll ask the arthritis clinic. I couldn't request a print out yesterday as you need to go through the legal aspects team, who are the ones who said they couldn't see them!