Partners in health
How patients can take a more active role in their treatmentand how healthcare providers can help them
I'm a thirty-something television drama writer, with two small daughters with differing health issues.
Clementine was diagnosed with renal pelvic dilatation (RPD), one of the most common organ-specific fetal conditions detected antenatally.
The diagnosis was made when I was 21 weeks pregnant.
The sonographer was reassuring, scheduled another scan for me, handed us a printed leaflet, and off we went.
My husband focused on the positives the sonographer had given us.
Chances were all would be fine by the time of the next scan.
It couldn't be that rare and sinister a condition if the Trust produced leaflets on it, right?
I hit the Internet. The majority of information backed up my husband's pragmatism and the reassuring text of the hand out.
And so to the next scan; another long drive to a different hospital, a chance to see my baby again.
But it wasn't the resolution we'd banked on; the dilatation had increased.
The sonographer was matter of fact: an ultrasound of the baby post birth.
In the meantime, a prescription of prophylactic antibiotics for a person who didn't yet exist.
Finding comfort, gaining confidence
We were still in and out of hospital with my eldest daughter, who has a developmental locomotor delaymuscle biopsies, ultrasounds, tests for genetic abnormalities, and her uncertain future all weighed heavily on me. And then this.
I found it hard to be optimistic that we'd be in the majority of cases where the reflux resolved quickly.
Clementine arrived in a hurry, at home. Every day we gave her a tiny dose of antibiotic.
It felt wrong somehow, as a mother, to be syringing drugs into my newborn.
And yet I was extremely grateful for those drugs, thankful for the early diagnosis, having spoken through online forums to other mothers whose children were not diagnosed until they had suffered both the pain and the damage of recurrent urinary tract infections (UTIs).
I felt empowered and emotionally less isolated through talking to someone in the same position as us, albeit reassuringly further down the road.
Sometimes, though, anecdotes don't always bring comfort.
I believe there's a responsibility about what you share with othersand the way you share it.
Another hospital, another scan, another two-hour round trip.
Gearing up to receive the diagnosis from the consultant, we were instead met with bemusement. There had been some kind of mix-up with the results.
Sleep deprived and bitterly disappointed that we still weren't going to get any answers, I sobbed.
Put yourself in patients' shoes
And then, a breakthrough; the consultant turned into a superhero before my eyes.
He asked us what we wanted to do next and listened to our answers, using them to dictate a letter to our GP backing our request for a permanent consultant at our nearest hospital, 15 minutes from home.
I could have hugged himjoined-up thinking and someone who wanted to help us manage this in the best way for us as a family.
Buoyed by the knowledge of the system I'd gleaned from my online friends, and inspired by the rapid progress we'd made once communication had opened up between us and the medics, I had the confidence to ask our new consultant questions about Clementine's treatment, discuss side effects of the medication, the long-term prognosis.
I got some sensible answers. At the end of that first meeting, we had a timetable, a treatment plan.
We had an invasive procedure to prepare for, but we'd been taken through it step by step and so the fear of the unknown was melting away.
At last, we had a view into the future.
I think sometimes patients, or patient's representatives, are too intimidated by their perceived lack of knowledge to actively participate in their treatment.
It took me a while to realize that, actually, I did have something to offer.
I could be helpful in supplying specifics and information about my daughter's condition; medics are not mind readers.
It would be helpful, of course, if the medics could put themselves in the patients' shoes a little more.
If they could realize how terrifying it is to sit opposite a doctor discussing your own, or a loved one's, health.
Sometimes, the mind goes blank with the pressure of it all.
A little empathy, and a few well-placed questions, goes a long, long way.
Then perhaps we patients could become accustomed to taking more responsibility for the outcomes of our treatment, comfortable with working in partnership with healthcare providers.
Speaking up, because we have confidence that our voice, however unskilled our words, will be heard.