"Difficulties in getting hold of my medical records & inconsistent practices"

About: NHS Fife NHS Lothian

(as a service user),

I had my first PET scan at ERI Imaging Facility.  The appointment was made by my health board, NHS Fife Oncology, and it came through quickly.  The appointment itself went smoothly.  So far so good.  

I then submitted a Subject Access Request to my health board, NHS Fife, but I was told that I had to apply directly to Lothian health board as they performed the scan. 

Patients should have a single point of access to our records, and asking me to approach another health board is not a patient centred approach.  I have just gotten used to the NHS Fife system and now I was being asked to navigate a new system in order to see my medical record.  This was frustrating as I knew the report would be sent to my health board.  

I now had to navigate a new health board's SAR system, and my health board did not give me any help with this, no sign-posting was included in their email telling me I had to apply to NHS Lothian.

The SAR paperwork asked how I would like to receive the report and I requested by email.  However, it turns out that NHS Lotian is not set up to email patients their reports, so they posted the report to me instead.  The email tick box should not be included on the form if it is not an option - if it is an option for some departments but not others, then why has this not been rolled out to all departments?

I like to receive my reports as soon as possible after the procedure.  This reduces the time I spend in scanxiety mode and it motivates me to play an active role in managing my health condition (secondary cancer).  Sometimes I want to share my report with a private practitioner so I need to receive the report asap.  I also want to read reports before I meet with my oncologist so that I have time to absorb the information and know what I want to ask/discuss at my appointment.  This again reduces scanxiety in the waiting room, and makes my appointment quicker thus saving the oncologists precious time.  

In this case, the report was not received until after I had seen my oncologist.  I spent two weeks in scanxiety mode, checking my emails daily for the result, only to finally find out after I called the department that they would be posting the report to me.  I was told the report had been posted to me a few days after they received my SAR, yet it took a month before it arrived.  I happened to see my Postie the day he delivered the envelope, and he said that it had not been delayed by the postal service; this suggests that the report sat in NHS Lothian for at least 3 weeks before it was mailed to me.

Patient access to medical records is inconsistent across and within health boards.  Some services email patients directly and accept an email as a request, others require a SAR for each & every report requested and may take a month to process the application. This is not patient-centred. I feel it is inefficient and time consuming for patients and staff alike.  Whilst updating IT infrastructure might require central government support, there is much that health boards can do to streamline their own services to better serve their patients. 

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Responses

Response from Mariska Vernon-Stroud, Patient Experience Team Lead, Patient Experience Team, NHS Lothian 10 months ago
Mariska Vernon-Stroud
Patient Experience Team Lead, Patient Experience Team,
NHS Lothian

I gather feedback from patients to recognise good practise and supporting improving services in NHS Lothian.

Submitted on 08/01/2024 at 16:21
Published on Care Opinion at 16:21


Dear Jefner,

I am Mariska from the Patient Experience Team. Firstly, thank you for taking the time to share your story with us. I want to apologise for the experience you have had in trying to obtain reports about your assessments and treatment. This has been a situation which has caused stress and frustration for yourself, when you are trying to be proactive, informed and involved in the decisions about your care. For that I am sorry.

Following reading your story I reached out to both Health Records and Information Governance to gain an understanding of what is standard procedure and practise. I understand you have experienced challenges to navigating two Health boards who have different systems. In response we will reach out to NHS Fife to discuss current procedures and ensure that both Health boards have a clear understanding of how to support patient’s access reports from the other Health boards and can provide advice to patient’s on how to navigate this.

With regards to receiving copies of your report by email and the length of time to receive your report by post. I would like to advise that NHS Lothian will use email addresses to process requests but are not always able to send confidential information by email. It may take up to 30 days for your request to be processed although the department endeavour to deal with your request as soon as possible. This is outlined in the Subject Access request guidance. We would value the opportunity to understand your experience in greater detail to see where procedures may have broken down or information is not available. If you would like us to do this this please get in contact with Health Records by emailing loth.sarteam@nhslothian.scot.nhs.uk or telephone asking for the Health Records Manager or Assistant Health Records Manager on 0131 2424 3041/42 or, contact the Patient Experience Team to make a complaint by emailing feedback@nhslothian.scot.nhs.uk or telephone 0131 536 3370 (between 9am-2pm).

I wish you all the best in your ongoing treatment and I hope we can support you accessing your reports more readily in the future, to enable you to focus on your health and wellbeing.

Kind regards,

Mariska

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