Imagine seeing your new baby in an incubator, covered in tubes and perhaps ventilated to help them breathe. Imagine seeing your new baby in pain and there being little you can do to make it better. Imagine being surrounded by unfamiliar machines that beep relentlessly, unfamiliar words, terrifying news, feeling constant bewilderment. Imagine not being able to hold your new baby, cuddle them, do all of the things you had expected to do with them.
For most parents, this is unimaginable. But it is the reality for parents whose babies are in neonatal care.
The results of the Picker 2014 Neonatal Survey reveal many heartening, positive results but a need for improved communication. Effective communication is at the centre of good health care and patient experience. Effective communication is my passion, and the focus of Hugo’s Legacy – the findings demonstrate just how much this work is needed.
Being a patient in hospital yourself can often present plenty of challenges: you may be in pain, uncertain of what is happening, and feel disempowered. These feelings are increased exponentially when your child is in neonatal care.
This section of the report – the areas that performed least well in all units in hospitals across the country – tells a compelling story of what most needs to be improved. Sadly, none of it is news to me.
Responses to question F2 “Were you given enough information to help you understand your baby’s condition and treatment?” are concerning, with 30% of respondent say they did not receive any written information at all. That is unacceptable.
In my view, the question is misphrased. It would be more helpful to ask “Were you given information to help you understand your baby’s condition and treatment in a way that was useful to you?” If I had completed the survey (I was excluded because my baby was not ‘discharged alive’ – more of that later) I would have said I had more than enough information – too much, in fact to the point it was not useful to me because I was so overwhelmed by it, I didn’t read it.
There is, of course, no one size fits all for communication. Different people need information presented in different ways. Happily, there are many alternatives and units need to make sure they are being proactive to make sure parents know about them all:
– The Bliss guide (this is what I was given: beautifully researched and presented, but far too much for me to take in)
– Tommy’s handbook, which is now available as an app
– Best Beginnings DVDs (Hugo’s Legacy helped fundraise for DVD players to show these films to parents at St George’s)
– Simplified generic and unit-specific information available in communal parents’ areas (I designed a poster for St George’s, where Hugo was cared for).
The information that is offered to neonatal parents needs to reflect the diversity in their understanding, literacy, and the fact that when you are exhausted and terrified information is not always absorbed effectively.
As mentioned above, surveys were sent only to parents whose babies were ‘discharged alive’. I completely understand why this would be the case: there are so many complex and sensitive considerations surrounding bereavement. However, this means a vital piece of the puzzle is missing from the survey: bereavement care and information. For parents whose babies die, this is as vital a part of the journey and experience as any, and it needs to be considered in order to give a full picture.
For example, question C11 “Did staff give you conflicting information about your baby’s condition or care?” The last week of Hugo’s life was fraught with ecstatic highs of hope, and the deepest lows of despair. The effectiveness of the steroids Hugo had been given to help his lungs had reduced along with the dosage. Frustratingly, we received differing opinions from different doctors: one told us Hugo may need more doses while he grew bigger and stronger on the ventilator, while another told us unless Hugo reached a certain point by a certain day to enable him to be taken off the ventilator “there was no point.”
There are no prizes for guessing which version I chose to give most credence to. Ultimately, the second doctor was correct. Sadly, the first doctor’s view made the news that there was no more hope for Hugo a terrible shock – I was not expecting any such news that day – not to mention the insensitive way such devastating news was delivered.
Bereaved parents will have just as much to say about their baby’s care as parents who took their babies home. There are so many ethical considerations surrounding surveys, but a way needs to be found to make sure bereaved parents’ voices are heard.
Consider, for a moment, the point about 30% of respondents saying they were not given any information. This is bad enough – just like any new parent, those early days and weeks with your baby are precious, and you cannot get them back. We cannot know how bereaved parents would have responded to this question because we were not asked – but consider, for a moment, the devastation and heartbreak of a bereaved parent. How do you think they might feel if they discover, after their baby’s death there was information that could have helped them better understand their baby’s care, or how to better get involved with their baby?
There really can be no more effective motivation to ensure neonatal communication is effective.
St George’s has been brilliant in listening to my feedback, and implementing changes where necessary. I hope other units follow their example.
To give credit where it is due, I do have more positive responses to some of the questions in the excerpt above. The night before Hugo was born, staff visited me to tell me what to expect after he was born (A2); I was given two photographs of Hugo so I could admire my son before I was able to see him (B2); we were able to speak to a doctor as much as we wanted (C7), even if the information was inconsistent; I was offered counselling from the unit’s counsellor while Hugo was in the unit, although it would have been useful to have known earlier it was available for bereavement, too (F4); we were very fortunate to stay in the Ronald McDonald House on site (F5), which was invaluable because we were a two hour drive away from home. Anecdotal evidence from other parents suggests differing levels of help and support in these vital areas.
I was cared for in the same postnatal ward as women who had their babies with them (B3), which was not ideal but I was fortunate to have my own room. I understand other women have not been so fortunate. Connected to this point, there needs to be better communication between postnatal wards and the neonatal unit, and a better understanding by maternity staff of the needs of women who do not have their babies with them.
My hope is that as a result of the survey results, improvements are implemented where appropriate for the benefit of all neonatal parents and their babies.