It is vital for organisations to come together and develop a single, combined record for each patient, writes Luke Readman
Imagine a family - mum, dad and two sons, making their way through life, work, school, holidays, homework. Then imagine the words ‘brain tumour’ following a scan of the eldest.
At this point, as you regroup, understand the options and proceed down the rocky road of treatment, the life of the family goes into freefall.
This is a familiar story to many people, almost normal. It may not be a son, but a father a mother, partner, friend or even yourself. None of us knows what tomorrow brings.
The collective NHS view that I have heard over the years is that the care delivered in these circumstances is some of the best in the world, but let’s develop this story a little further.
As we get older we develop and live with chronic disease and, as the population ages, many people have multiple diseases.
The son has surgery to remove the tumour but unfortunately has a brain stem stroke in theatre. This leaves him with impaired speech, swallowing, eyesight, inability to walk, oh and the nerve to his right ear is damaged during surgery, right sided complete deafness.
The tumour is typed and needs radiotherapy. After a few weeks he develops swelling of the spaces in the brain-hydrocephalous and needs a shunt to drain the fluid.
Again, whilst perhaps extreme, the need for multiple services is a familiar story to many. As we get older we develop and live with chronic disease and, as the population ages, many people have multiple diseases.
It is very unlikely that all these services will be provided by one organisation. Far more likely is that several organisations will be involved.
In the story here, eldest son had a total of seven different organisations providing care. How does that work then? Who knows what is really happening? The GP with the lifelong record?
Well, that’s difficult, isn’t it? 5 minutes per patient, in-out, next! How often is the letter not there? How often is the appointment not properly communicated? How often is a test requested twice or the result not available? How many decisions made do not have all the evidence present?
In East London, organisations have come together with a vision for a single, combined record for each patient, from all involved in their care.
And so parents, well more normally mum, keep a copy of every document, letter, test, appointment and decision.
Increasingly, as we struggle with the demands of a growing population and changing workforce demographics, we are expecting patients, relatives, carers to take on more responsibility – self-care. At the next appointment mum briefs the doctor with the information from the other organisations.
In East London, organisations have come together with a vision for a single, combined record for each patient, from all involved in their care. So now, when a patient is with a GP or a consultant, test results are available, duplication is avoided and future appointments are known.
What a relief! For me, as chief information officer leading this work with Barts Health and others, this achievement is not something that should pass without recognition, thanks and acknowledgement of the transformation taking place.
If here, why not everywhere?
To have got to this point, it seems so very obvious to share records - now we are there. Bringing this back to the story of my family, of my son, I am certain as to the difference this could have made had it been in place.
As a parent, it seems inexcusable that there is any doubt about urgent national effort for this to be available in any location. Then of course is the next obvious question, what of patient’s access?
There is no going back!
Luke Readman is chief information officer at Tower Hamlets, Newham & Waltham Forest CCGs