Our patient representative Laura Fulcher explains how poor access to records leaves people feeling powerless, and how she hopes to see patients put at the centre of digital change in care.

“Dealing with the NHS is a full-time job for you, isn’t it?” asked my GP one day, during yet another appointment of trying to wrestle details of my health record out of the system.

I had a simple request: I needed information on how often I should be screened for my Lynch Syndrome diagnosis, a genetic condition that increases cancer risk. This information was crucial to me – I needed to feel confident that my condition was being monitored, secure in the knowledge that I didn’t need to chase scans or appointments.

Sadly, my GP did not have access to this information herself and given it had not been shared with my hospital team also, as I feared, no provider could take responsibility for my screening.

“Shall I write to the genetic team to query it?” she asked.

I foresaw the months this would take – for the GP to dictate the letter, the secretary to type it up to be sent to the hospital thirty miles up the road, only for the same process to be repeated again when the information was relayed back. And the chasing I would need to do to get it all completed – because these things always get a little lost along the way.

The burden of it all felt too much. It was a burden that weighed heavily on my shoulders since my diagnosis with bowel cancer four years earlier.

Lack of information and the consequent powerlessness were recurrent themes during the fifteen months I had to wait for my cancer diagnosis. I was very much lost in the system with no access to information that might empower me to raise concerns and to take greater responsibility for my health. Had I known how long I would need to wait for appointments, had I access to my GP notes so that I knew when to return if symptoms didn’t clear up, had I known that no information was being relayed from out of hours doctors, and had I known my attendance at A&E had not been recorded appropriately, I would have raised these as issues. Instead, I trusted in the NHS believing that someone was ultimately responsible for my care.

Yet fundamentally, the only person who can be responsible is the individual themselves and you cannot look after yourself without access to your own medical information.

Instead, I felt like a small child again, vulnerable and helpless. I’d have loved to see referral letters and communication between providers, knowing where I was in the system, where I was headed, and perhaps how long I must wait. I needed a helping hand – information on who was responsible for which aspect of my health and how to contact them – both by phone and email.

It’s not just lack of access to information that cause issues, but the content of the medical record themselves. In its current state, information focuses on diagnosis and treatments, with no room for details that are important to me – the consequences of these treatments and the long-term effects they have on my life. It is dealing with these consequences that is now the priority in my eyes. What an improvement it would make if people were able to contribute to their own record, restoring some of the eroded autonomy that ill health causes.

And it’s about validation too. When patients self-report issues, it often goes overlooked when not supported by a clinician. During my own long wait for diagnosis, when I relayed information from the out of hours doctor and the need for further tests, the GP did not take me seriously due to the absence of a clinician’s report. Since then, often clinicians do not believe me when I tell them of my bowel cancer diagnosis; ‘you’re much too young,’ they say. Wouldn’t it be wonderful for health records to be created collaboratively, changing the ethos of healthcare: patients *can* contribute usefully, their lived experience validated.

In the meantime, all this lack of empowerment breeds anxiety. It is no wonder to me that there’s a relationship between physical health issues and consequent psychological problems given how little autonomy people have. As a usually independent person, it is stressful knowing that I do not have access to information to champion myself. And while the NHS focuses on ‘care’, all I can say is, what use is better care if I am made to feel all the more powerless and vulnerable? Truly, what I need is confidence and control over my medical information helping me to lead a better, brighter, independent life.

I joined the PRSB in September as a citizen representative on the Assurance Committee and provide feedback on all kinds of exciting documents, applications, and consultation proposals from across the digital sphere, ensuring that public voice is heard. Current aims are to try to make data papers a little less jargon-tastic (so that they actually make sense to most people!); learning what other patient involvement mechanisms exist in data decisions so that public reps can work together; and supporting the PRSB in their aim to put the patient at the centre of digital strategy that seems so very distant from front-line health care.