'I had no idea my doctor had diagnosed me with borderline personality disorder – until I gained access to my medical records'
As of November, all GP practices in England have to offer patients automatic online access to their health records, via the NHS app and website, unless they opt out or exceptions apply.
This move is not without its controversy. Recently, over twenty Violence Against Women and Girls organisations, including Refuge and Women’s Aid, shared their concern that the move could mean domestic abuse perpetrators coercing women into sharing their medical records, including details on medications and their sexual, reproductive and mental health.
Ellen Miller, Interim CEO of Refuge, advised those living with an abuser to call their GP surgery and ask that access to their records be switched off, so that they cannot be viewed in the NHS app.
In a feature published in the November issue of Women's Health, on news-stands now, WH digs into the realities behind the decision.
It was a desire to enjoy a latte in her local coffee shop in summer 2020 that led Grace* to download the NHS app for her Covid pass. It soon began to gather digital dust, only used when ordering, among other things, the medication that helps her manage the symptoms of her bipolar disorder.
That was until last year, when a quick tap to request a prescription became an hour-long dive into her medical history. Unbeknown to Grace, a 33-year-old NHS physiotherapist based in Hampshire, the early roll-out of the NHS’s Accelerating Citizen Access to GP Data programme had unlocked her records. A fluorescent yellow notice flagged ‘sensitive information’. Still, she dove right in.
Previously, you could request your medical records from your GP practice (an often arduous process). But from November, if you’re registered with a GP in England, you too will be able to read what your doctor writes about you.
And given that GP surgeries are, like businesses, all run differently, your practice – like Grace’s – may decide to release a lifetime’s worth of doctor’s notes, from referral levels and test results to medicine and vaccine records.
It’s all part of the new GP contract, which obliges your doctor to open up your record, unless you ask for it to be blocked.
Proponents of the scheme – which has already been a success in other countries, including the US – frame it as the NHS version of online banking: a system that enables you to keep on top of your health with minimal fuss. Much like Monzo, it’s quick, easy to use and likely already downloaded on to your device.
But these virtues are precisely what has left some doctors rattled. A recent study published in the British Journal Of General Practice warns that instant access could lead us to surprising information that’s difficult to interpret without context, sabotaging the goal of supporting patient wellbeing and independence.
The authors also point to the risk facing patients who experience domestic violence (that’s nearly 5% of adults in England and Wales*), whose perpetrators may try to access sensitive medical information as a means of manipulation.
The domestic violence charity Women’s Aid told WH that it’s working with NHS England ahead of the roll-out to ensure the right safeguards are in place. (After this feature went to press, the charity, along with others in the Violence Against Women and Girls sphere, stated that they do not believe sufficient safeguarding, has, in fact, been implemented.)
So can this scheme really be seen as promoting patient power? Or is instant access to health records a prescription for problems?
Between the lines
It wasn’t long before Grace found messages between her psychiatrist and pharmacist discussing changing her medication – an anti-psychotic drug – to a cheaper version. She’d been taking it for four months and was told it was too late to dispute it.
‘I was low, tearful and not sleeping well,’ she says. ‘My new medication wasn't effective and I experienced a bipolar relapse. When I spoke to my mental health nurse, she confirmed this shouldn't have happened.’ This discovery was harrowing enough, but Grace also found out she had osteopenia – a condition that begins as you lose bone mass and is a precursor to osteoporosis. Eating disorders are a big risk factor, and Grace suffered with one between the ages of 13 and 31.
She’d had the requisite screenings two years earlier, but she didn’t get the results – and was never booked in for the follow-up scan to keep an eye on the progressive, chronic condition.
‘I’d always been under the impression that nothing bad had ever happened to me long-term as a result of my eating disorder. But actually, it had – I just didn’t know about it, she says. ‘It definitely undermined my faith in my doctor.’
Grace isn't the only one coming to terms with troubling news. Jade* also found an unwelcome surprise in her medical notes: a diagnosis of borderline personality disorder (BPD) from 2014.
‘I have no idea how or why I was diagnosed. I don’t fit the symptoms for it,’ says the 36-year-old Yorkshire-based gym instructor, who also has diagnoses of ADHD and autism, alongside a schizoaffective disorder. ‘[BPD] is still on my record because they can’t retroactively change things unless you appeal it through a legal process.’
Alongside the knowledge she’s been in the dark about a highly stigmatised diagnosis for almost a decade, the label has real-life consequences. The National Institute for Health and Care Excellence states that BPD patients should receive most of their care in the community, rather than a hospital.
But it’s often a postcode lottery, and since moving from Scotland to England, Jade can no longer be hospitalised when she goes into a state of acute psychosis; her new mental health trust is reluctant to care for BPD patients this way. ‘Because I’ve got BPD on my record, I know that if it happens again, I can’t be hospitalised,’ she says. ‘And there have been times where, had this not been possible, I probably would have died.’
Jade relies on the support of her friends and is petrified of becoming unwell again. ‘When I knew there was a safety net, I was able to do more things without this constant fear that one day my friends would no longer cope and I’d be alone in a crisis.’ And now? ‘I’m scared to go into full-time employment, scared to socialise, scared to leave the house.’
Trigger points
Of course, the distress these women felt doesn’t lie solely at the door of the new NHS protocol. Missed links and breakdowns in communication are the root of their suffering – not the ability to scroll their medical history between Instagram and Rightmove.
But these are symptoms of a wider, well-documented problem: an overstretched and underfunded NHS – something doctors are warning could be compounded by the new changes.
Serena Rakha, an NHS GP in Birmingham, tells WH that to prevent patients being alarmed by what they see on their records, GPs have been scrambling to redact sensitive information.
‘If this is a regular undertaking, done alongside other responsibilities in a busy GP’s schedule, burnout is a real possibility.’ Going forwards, Dr Rakha says the change requires GPs to write notes with a patient in mind – avoiding abbreviations, for example. Reducing harm isn’t easy; doctors often use medical definitions such as ‘overweight’ and ‘obese’, which can be triggering.
But while writing ‘conversational’ entries has increased the time Dr Rakha spends on each patient, she’s broadly supportive of the idea that patients should see their medical notes –with the caveat that this should only happen when they request it.
Practising 100 or so miles north in Hyde, Cheshire, is one of the country’s foremost champions of patients’ medical record access. Amir Hannan introduced the policy at his practice almost two decades ago in a bid to regain shattered patient trust (the surgery was previously helmed by serial killer Harold Shipman).
He tells WH that greater understanding of their wellbeing improved patients’ buy-in to the health management plans shared by their GP.
‘No one likes to be told what to do,’ he says, simply. ‘That a collaborative approach is more effective is basic human psychology.’ But while he’s all for patients having access to their medical records, he’s keen to draw a line between his process and what’s soon going to be rolled out. ‘It’s not safe to switch on access without going through a robust consent process,’ he adds.
At his practice, consent takesthe form of a questionnaire asking patients to reflect on how they’d respond to information that’s surprising or difficult to interpret. ‘Having access to your record is a treatment option; it’s like taking an antibiotic or painkiller,’ he explains.
‘Yes, there are people for whom there will be benefits, but there are also people for whom there will be harm – and the trouble is, you don’t know. You wouldn’t put people on medication by default,’ he adds.
For the new programme to be genuinely useful, Dr Hannan argues that all GP surgeries need to have a consent process in place, alongside funding from NHS England to support it. That way, GPs would have the resources they need to roll it out effectively. But without that? ‘It’s built for destruction.’
Mixed messages
If you’re starting to think that this ‘empowering’ move sounds anything but, health psychologist Sula Windgassen sympathises. ‘It’s not as simple as: get access, feel empowered,’ she warns. ‘It can potentially do a lot of harm.’
She goes as far as suggesting that giving patients access to all their health information could widen the health literacy gap in the UK, especially for those from non-western cultures who have different views on illness.
‘If patients are seeing a diagnosis that they wouldn’t have identified with themselves, or one that’s particularly frowned upon in their culture, that’s going to be problematic.’
Dr Windgassen specialises in helping people manage chronic conditions, such as fibromyalgia and endometriosis; people who, she believes, will be over-represented in those seeking out their medical notes; people who are already struggling to have their medical needs met.
‘And if they’re already struggling to get access to the healthcare system, and they see more things that give them more question marks, that’s likely to be actively destabilising.’
The fact that instant access to data will raise questions that can’t be answered in a timely fashion is a fear that Jade shares. ‘You can’t ask questions to an app, you can’t get an explanation, you can’t advocate for yourself,’ she says, confirming that she’s still in the dark about why she was diagnosed with BPD.
‘If anyone decides to read their notes, I recommend they have someone with them.’ Still, she’ll check back after every appointment. ‘I like knowing what they’re saying about me.’
So does Grace. ‘I now always check the NHS app post-appointment to see if anything has been missed,’ she shares. For Grace, the impact of coming face to face with her records has been twofold: while it shook her faith in the health service, this knowledge has also proved to be powerful. After she clocked her medication change, Grace successfully pushed to be put back on the original formulation.
And since finding out that she has osteopenia, she’s prioritised a skeleton-supportive diet and fitness programme to slow bone density loss. As for veteran medical note-sharer Dr Hannan?
He’s helping GPs at other practices build their own consent processes around patient access in a bid to cushion the chaos he believes will accompany November’s nation wide roll-out.
‘I haven’t made a penny out of this,’ he says. ‘I’m doing it because I believe in the NHS.’
Smart ways to harness your health online
Dr Serena Rakha reveals the steps you can take to become an empowered patient:
1. Be streetwise
Social media can be a great place to read about other people’s experiences of health conditions, but bear in mind that what they say isn’t necessarily based on clinical facts. If you enjoy consuming this type of content, take it with a hefty pinch of salt.
2. Use verified websites
If you decide to access your GP health record and come across something upsetting or difficult to understand, Google is not your friend. Instead, use verified websites, such as nhs.uk or patient.info; these provide evidence-based information written and reviewed by practising doctors.
2. Take reading recs from your doc
Next time you have an appointment, ask your GP whether they can provide any useful information on a medical condition or procedure. Many GP practices also have useful resources on their websites, which often include links to trusted websites.
*Name has been changed
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