Effective communication with patients in any healthcare context is of the utmost importance. Sadly, providers so often don’t put enough thought into this aspect of care: during my journey I have experienced a litany of communication disasters that have added further distress and upset to the worst situation any parent could possibly imagine.
The most serious of these communication disasters happened during my stay in the intensive care ward at St George’s Hospital. I had been sent to that ward after delivering my son Hugo by C-section at just 24 weeks pregnant because I had severe HELLP syndrome and severe pre-eclampsia and had been on the brink of multiple organ failure.
My very small, very sick and very premature baby was taken to the hospital’s fantastic neonatal unit, where he fought for his life. At that stage, his progress was taken hour-by-hour.
Hugo’s Story mentions that I had to wait about 30 hours to meet him, because I was recovering in intensive care. This is only part of the story: I had been recovering from the surgery and the evil illnesses that put me in that position, and was attached to all kinds of machines.
I had been given promises throughout the day after Hugo was born that I would be taken to meet my son. I hadn’t been able to meet him on the day he was born because the C-section had been done under general anaesthetic, and I had been very ill myself.
The neonatal unit had taken two photographs of Hugo for me which I treasured and couldn’t stop looking at. I couldn’t wait to meet my baby in person. My partner spent the day walking between the intensive care ward and the neonatal unit visiting us both, and giving me updates on our son.
The visit to see Hugo eventually happened at around 8.30pm that evening. I was finally being prepared to get in the wheelchair to be taken to the NNU. This was a delicate operation because of the surgery and the wires and it was the first time I had been mobilised since the C-section.
The curtains had been drawn to protect my modesty, and my partner’s head suddenly appeared between them. He told me I needed to go to the NNU immediately.
Despite him telling me not to worry, I could tell by the look in his eyes that something was very wrong. I insisted he tell me what was wrong: Hugo’s blood pressure was declining, and nothing his doctors or nurses could do seemed to be working.
They were worried they were losing Hugo.
My sense of terror at the thought of my son dying before I had a chance to meet him was indescribable. That feeling still haunts me today.
Thankfully, Hugo’s blood pressure miraculously improved the moment I arrived. I think he just wanted his Mummy.
I am incredibly proud of the NHS. I am so grateful for all the compassionate, kind, dedicated care that I received, and that was lavished on Hugo during the 35 days of his life.
Unfortunately, my stay on the intensive care ward at St George’s has left a very bitter taste. In addition to the difficulties with being taken to see Hugo, there were a range of other issues that made me feel like my care and welfare was not important to the ward.
I made a formal complaint about my experiences on that ward: I told them I would never have forgiven that ward’s staff if my son had died before I had a chance to meet him. The incident was entirely avoidable.
I received a comprehensive response yesterday. They have apologised for the distress and upset that was caused, and acknowledged there was “a failure in planning and processes” in not taking me to meet my son earlier that day.
The majority of the issues relate to problems with communication. So important to get right, so easy to solve, yet so easy to get wrong.
St George’s says a range of actions are being put in to place as a result of my experiences.
These actions are positive. Finding oneself in intensive care after delivering a baby, being literally helpless and unable to see your baby is distressing enough. There is nothing that can be done to put right what happened to me, but I am pleased that being open about my story will hopefully improve the experience for other mothers in a similar situation.
It also demonstrates that it can be worth complaining to a healthcare provider when there has been any kind of problem with your care. Complaining gives the provider an opportunity to put things right, and avoid the same thing happening to other patients.
Communication problems have also featured in dealings with primary and community services throughout my journey.
A GP’s referral letter mentioned my ‘miscarriage’. I spoke to a practice receptionist not wanting to make a complaint at that time, but just wanting to point out their mistake.
The GP, to give them their due, phoned me at what must have been their first available opportunity to apologise. Unfortunately they managed to dig themselves a further hole, trying to excuse the mistake by saying they had been busy, and implied they had been having a bit of a tough day when they wrote the letter.
A healthcare professional telling a recently-bereaved mother that they were having a tough day defies belief.
The GP who, incidentally, I have never met, also said she hadn’t been clear about my baby’s outcome. It seems she hadn’t bothered to take a moment to read my notes to check this important fact.
The loss of any baby for any reason is distressing, and getting the facts wrong is incredibly upsetting and inexcusable.
My patience has been tested by a range of other issues, many of which are just frustrating. An appointment card arrived without a letter to explain context, directions, or what would happen during the appointment. Another example is a health visitor who left a message on my phone a couple of weeks after Hugo’s birth saying they understood I was at home and would I like a visit. I wondered on what planet a 24 weeker could be at home two weeks after their birth, but most likely they hadn’t taken a moment to check the details.
The vast majority of health care professionals want to do the very best for their patients. The vast majority of my journey through the health care system since this all started back in February has been exemplary.
Even the professionals who have not demonstrated best-practice with their communication have been well-intentioned.
The poor communication hasn’t made the situation any worse – nothing could be worse than having HELLP syndrome, and losing my precious son. However, poor communication certainly doesn’t help when you are feeling angry, lost, confused and just plain sad.
The good news is, these situations are relatively easy to rectify – and cost nothing. Good communication can make a world of difference to a patient’s experience, and perception of a provider’s services.
Most of the time, it just requires health professionals to step in to a patient’s shoes for a moment, to think how they might like to be communicated with if they were in the same situation.