Simon Shemilt, founder of the Keeping The NHS Honest campaign, gives a new perspective on patient safety and the NHS.
Imagine you have an ongoing health issue. You finally reach out for help from your GP. They see there is an issue that needs a specialist review, and you are referred. Eventually, your referral hits the top of the list, and you see a consultant.
After perhaps an extended period, you finally get assessed. Then nothing. No explanation. No communication. Months pass until, by chance, you are given a copy of an internal letter stating a diagnosis. Something you don’t understand, that has never been mentioned or discussed with you.
No follow-up. No referral for treatment or support.
You would rightly question, query or even complain as to why you weren’t told or had the diagnosis explained to you. Imagine being told the consultant “didn’t know” they had to tell the patient the diagnosis. Imagine finding out about a second, different diagnosis, in the same way. Imagine never being referred for any treatment or support. Finally, imagine seeking answers for two further years, but still getting no answers.
As patients, we put our trust, health, our lives even, in the hands of healthcare professionals we have often never met before; reassured we are in “the best place”. But, unfortunately, all too often, things go wrong, and a secondary traumatic experience may be just around the corner.
Following procedure
As a patient, one would think that when things go wrong, one could rely on the NHS Trust to follow a rigorous procedure to investigate and identify where things went wrong. They would want to learn, improve and ensure the system was robust enough to ensure the cause was not repeated for future patients. What then, when the so-called investigation makes excuses to the patient and doesn’t take any responsibility for what went wrong? The brick wall appears. “Take it to the Ombudsman,” they say.
Well, the Ombudsman must see the issues here and want to help resolve this issue for the patient. But the only evidence they see is directly from the Trust they are looking at.
Often, many months pass before a case reaches the Parliamentary and Health Service Ombudsman; time in which data may be lost, go missing, or be amended in some way. By marking their own homework in the first place, Trusts have ample opportunity to ensure the right information is provided and rebalance the scales to reduce the likelihood of any further investigation.
A change in the landscape
When one patient complains and lives with the unnecessary burden of this fight to be heard for many years, it could be seen as an anomaly. Unfortunate. A one-off. Bad luck.
That’s what I thought. But I figured the system should be far more robust, and if an articulate individual with a well-written, evidence-based complaint fell foul of the system, how would others fare? And so, the campaign was borne from a disenfranchised patient, wanting to change the world, and expecting to do so on their own.
That patient, it turns out, wasn’t alone. The simple Facebook group began to grow. Ten members, then 30, then 100. Others had experienced similar problems. With little more than word of mouth, within two years the group had 400 members, and currently in excess of 520.
This was not a one-off. It affected all demographics, all locations, all home nations. And with growing numbers comes awareness, a louder voice and the real potential for change. Just look at the Post Office scandal; there is no longer a tolerance for injustice or cover-ups from big, powerful organisations.
The change that’s needed?
To overcome the hundreds of similar experiences that we became aware of, and to create a robust, reliable and efficient system, the proposal for a fully Independent NHS Complaints Service was put forward. The INCS would see the extraction of formal complaint investigations away from each NHS Trust (investigating themselves with their own staff); and their internal process of sanitising the outcome, to the new independent service. The experiences described by patients and their families all concur that the responses received after an investigation are, at best, watered down. At worst, something more serious. Patients and families should not need to spend years trying to reach the truth and find closure to what happened to themselves or their loved ones. Experience shows us, as time passes by, vital information has the potential to be lost, deleted or misplaced.
The proposal
A new service, the INCS being separate in location, staff and funding from the NHS. A national body with regional locations for access for face-to-face meetings as needed; staffed by specifically recruited and trained individuals, employed for this service.
Teams able to gather all necessary records and information efficiently, before anything is lost or deleted, as is the case for investigations undertaken by the Health, Safety, and Environment (HSE). Investigations undertaken diligently and from a neutral perspective. Findings recorded centrally, with a database collating complaints from all Trusts to enable not just individual resolutions, but identification of themes, patterns and key areas of concern.
We want to take the service one step further and ensure the insight gained from patients is not the only source of learning and improvement. Our team includes current and ex-NHS staff, and we know that the insight from staff is just as vital for learning and improving. We want to empower staff to also be able to safely speak up and share their insight.
Facilitating this through anonymous reporting structures into a specific team within the INCS, rather than through line managers, allowing their insight to be investigated and learning opportunities identified and fed into the same central learning hub, to work alongside patient complaints.
The key to learning and improvement of patient care and outcomes is truly listening and understanding the cause of problems. The benefits of this new service provide a platform for large-scale learning, tapping into the pot of gold that comes from the insight of service users and staff.
