Paola Brolis: A message to the NHS regarding our deaf daughter (BSL)

Our sweet daughter Everly will be 3 years old soon, and like many other deaf children, she attends hospital appointments. Some are part of the ongoing ‘deafness related’ care she receives, some are not – children are well known to scare parents with high temperature or by feeling really unwell with bugs, aren’t they?

That means we have had our fair (?) share of trips to A&E, and have met various types of medical staff that looked after us. From A&E triaging to being admitted to a paediatric ward, we have had nurses, junior doctors, consultants, medical students all caring for us.

I would like to share with you all some of the most ‘popular’ questions we have been asked or assumptions that have made about deafness, hoping people can reflect on these and learn something new. Please share as much as you can so we can reach as many people as possible!

When my daughter is unwell, I am, of course, worried. I need someone to help us make her feel better, as soon as possible. We all know A&Es are busy places, and most of the times you need to give your personal details and reason for attendance to an admin clerk at a desk before seeing a clinician.

This involve 15 minutes in the queue to get to the desk, and another 10 to share your details.

Sometime later( this can range from minutes to hours) the nurse calls you. Your child is very unwell and the nurse starts engaging with them, asking questions.

So I say: ‘my daughter is deaf’.

‘Oooh, I’m sorry’ – ‘does she have any OTHER medical conditions?’ she replies.

Dear NHS STAFF, deafness is NOT a MEDICAL CONDITION. You expect medical staff to know that. But they don’t.

(This one is a question we get asked the most, even when attending outpatient appointments)

We get sent to the paediatric A&E department, and the doctor arrives. Again, she starts engaging with my child, so I say again: ‘my daughter is deaf’.

‘Oh – is there anyone else in the family with the DISEASE’? she replies.

My jaw drops in disbelief. Have I heard correctly?

Dear NHS STAFF, deafness is NOT a DISEASE. Diseases need a cure, deafness most certainly does NOT!

I reply: Everly is the only deaf member of our family and her first language is British Sign Language (BSL.)

‘Oh, but can she speak?’ she asks.

Why are we now focussing on speech when my child is unwell and needs help? We are here to find out how to help her,right?

Dear NHS STAFF, perhaps you could have asked: ‘Can she sign where it hurts’? or ‘can she show where it hurts?’

Later in the afternoon, we get transferred to the hospital’s paediatric ward as we’re staying overnight for observation. The staff there do not know my child is deaf. So I tell them, again. I mean, why is this not stated on her medical records? It should be! This is our ‘usual’ hospital so it’s not the first time we attend this department.

This time it’s the consultant coming around, and when I say that Everly is deaf, his answer is: ‘Does she not have hearing aids?’

I reply: She has cochlear implants, but she doesn’t want them on when she’s unwell. It’s not a problem, we sign.

From his facial expression I understand he doesn’t know what cochlear implants are, so I explain briefly. He says: ‘That’s great – so she can speak!’

Oh dear, back to focusing on speech again.

Dear NHS STAFF, deaf people have their preferred communication method/s. Some choose to speak (aided by hearing technology), some choose to sign, some others choose to speak AND sign. Please understand that, DO NOT make assumptions and ask them directly what’s their preferred method of communication.

He continues….’you can translate for me then’

Ok. This is a big one. I know it’s going to take years for medical staff to understand that it’s not fair to patients to have family translating for them. It’s a matter of respect, privacy and dignity.

Dear NHS STAFF, imagine having to be the one giving your French non-english speaking family member bad or worrying health news, would you want to do that?

Your family member would panic and start asking lots of questions that you cannot answer, or answers that you can report from the doctor incorrectly or partially because you don’t know the medical terminology, leaving out important information.

Instead, please ASK if a BSL interpreter is needed – for both of you, of course! The interpreter translates for the hearing person too, let’s not forget that!

These days, there are plenty of ready-available certified BSL interpreters through apps on smartphones if there is no time to arrange a face – to -face one!

I do hope these real-life experiences are useful to understand that EMPATHY and RESPECT go a long way, especially in difficult situations when parents are worried for their child’s health.

And yes, words have a meaning and how you use them impacts on people’s feelings, so please choose your words carefully.

Everly bounced back the day after and we were discharged – by that time she won everyone’s heart and we left with staff promising they will learn BSL!

I wish the NHS would understand how important this is for deaf patients of all ages.

Paola is a hearing mum raising her Deaf daughter Everly with her hearing husband Stef. Paola is passionate about advocating for her daughter, learning BSL and spreading Deaf awareness. You can find Paola documenting her BSL journey with Everly here.