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Vasculitis UK
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How to access clinic reports?

Many of you seem to have detailed reports on your bloods and clinic findings. I am finding it very difficult to obtain my reports. I requested them on the form supplied by Addenbrooke's but they telephoned and seemed to need me to file a request for each report. I have computer access to my GP records but they do not receive most of my reports either. I spoke to the PALS office who first told me that I was unlikely to understand a clinical report. I persisted (politely) and was eventually told that the reports are scheduled to be sent to me but have not yet been posted ... up to six months later. Some are sent, most are not and no blood reports. Could anyone tell me how I can gain full access to my records? The doctors and nurses are wonderful, but decisions on treatment etc. are usually taken after clinic appointments so I would like to know the findings and plans of the various specialists.

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Hi amms43,

Do you mean the letters that the Dr's write after every visit ( which should go to your GP ) or what is written in your notes at your appt?

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Thank you Keyes for you swift reply. My patient records at the GP surgery include both of those, Dr.'s notes, letters in and out and test results. I just don't know what is available and it would be helpful to have some idea of the cinsultants' opinions and intentions for future treatment.

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It would be unusual for patients to have access to anything other than clinic letters, blood and scan results etc.

Anything more would entail applying for all of your medical notes which is allowed but there is a process to follow.

It sounds like the issue here is that you aren't involved in discussions around your care. I know when I had my medication changed my Consultant discussed it with me as well as a plan B if things didn't improve.

As far as I was aware Patient View only has the routine blood tests etc on it and doesn't report ANCA results and more specialist tests.

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Please excuse my confusing earlier reply. The access you mention is what I need and I have asked for the letters and test results. PALS told me the clinic letters, test, scan and blood results are all there and scheduled to come to me but have not made it to the post yet. Some are almost a year old. I have never received any scan or blood results and only sporadic clinic letters.

Jgold is correct, PatientView at Addenbrookes came online in 2015 but 'faltered' and has not come back online.

I would just like to have sufficient information to 'join the dots' on my situation and treatment.

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Yes indeed, Patient View does not report ANCA results and more specialist tests. I'd not really noriced this because in my case my focus is on kidney function plus assurance that other vital signs remain OK.

Also my clinic letters do not give these results routinely - only if the reviewing doctor decides there is something worth reporting to the GP (and me).

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I get information via two routes -

1. Copies of hospital clinic reports to my GP. Mine take about two weeks to come through.

You have right to these but you may need to register that you want them. I suggest you contact your consultant's secretary at Addenbrookes. If this doesn't sort it then I suggest try PALS once more, but then go straight to the hospital chief executive.

2. The Patient View website - see patientview.org/#/

This has lots of information - most importantly blood test results which normally come through the same evening or next day at the latest.

Your hospital department has to be registered, and if I recall correctly you need to get something from them to set up your own access.

I've looked to see if Addenbrookes is registered. They are, but digging into the site I found a note "PatientView commenced Feb 2015, but has faltered." Again I therefore suggest you speak to your consultants secretary.

If this produces no joy, there are the following contact nos. at Patient View -

Helpdesk for unit admins – Fiona Braddon is based at the Renal Registry in Bristol. Tel: 0117 414 8159, email: nbn-tr.patientview@nhs.net

Afzal Chaudhry (Renal Association lead for PatientView), email: anc35@cam.ac.uk

Neil Turner (PatientView chair), tel: 0131 242 9167, email: neil.turner@ed.ac.uk

Hope this helps.

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Thank you jgold. Very helpful information. I have a clinic appointment tomorrow so will ask and will maybe visit PALS office.

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Just to add that I find the clinic to GP reports (which include the routine blood test results) very useful to keep myself up to date, and to confirm that the clinic doctor and I have correctly understood each other. I carry the most recent one with me so if something happens and I end up in a strange hospital (which thankfully hasn't happened so far) there is useful information immediately available.

It was a bit of a battle to get them sent regularly, but working through the consultant's secretary eventually got my name in the right place on the hospital computer and they now arrive in the post without fail.

As an aside, it seems crazy that the reports are created electronically, then printed and sent by costly post to both me and the GP, and the first thing both of us do is to scan them into our computers - with a staff cost for a GP practice scanning probably hundreds per week. It seems that the NHS nationally has over-cautious rules about using e-mail, even if the patient is willing to sign a disclaimer absolving the parties against any harm / loss from hacking.

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Thank you jgold. I am really looking for what you have and for the same reasons. I completely agree with your view on the lack of electronic communication. Same for the GPs though I do access my records on line and can print them from there. Unfortunately, the GPs often do not receive my clinic reports or test results either.

I also agree with your reason for needing the up to date results and reports. I did fall ill in France and they asked for my most recent results and told me I should always carry them.

I will see how I get on at the hospital today.

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Your rights re health records

nhs.uk/chq/pages/1309.aspx?...

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