Anonymous: I wasn’t given an interpreter when my mum died, and then I was excluded from funeral arrangements

I always overcome communication barriers by using BSL interpreters and communication assistants (for translating between languages at a fluent level).

My family, who live in Europe, communicate with me by fingerspelling or using basic vocabulary signs and written language. Consequently, they lack the ability to convey information at a fluent level and I miss out on details.

I was not aware that my mother’s medical condition had developed two years before her death until I saw the death certificate that listed them.

Two months before my mother’s death, I was informed, not by my family, that my mother had been taken to hospital for unknown reasons.

Several days later, I was also unaware when my mother was admitted as an emergency to hospital on the same day as I took my partner to the airport for her flight home (overseas).

Two days later after my mum’s emergency admission, my father informed me: “Your mum has got worse and is now very ill”. Later on, he said: “I do not think she may last any longer”, so I rushed to the country where they live.

The conversation between my father and me, based in UK, was via Skype chat and via SMS text messages. The amount of information conveyed to me was very limited, with several questions raised.

I made a request via my father (being ‘next-of-kin’) for the hospital to book a Sign Language (“SL”) interpreter and my brother responded, on my father’s behalf:

“The doctors that are dealing and trying to help Mum will only talk to Dad. They would not even talk to me [calling my name]. They will not talk to any stranger either about Mum because it is an invasion of privacy and against the law.”

The role of SL interpreters are to translate / convey information at a fluent level between different languages. “The Law” referred to relevant data protection legislation, however the SL interpreters would be accepted in compliance with disability-related legislation.

That public hospital have the obligation to providie SL interpreters and has an existing contract with a deaf organisation supplying SL interpreters.

The liaison between a deaf organisation and the hospital’s ward manager confirmed that my father had to give permission. Another deaf organisation signposted me to the locally-based Social Services which was very helpful.

I delivered a long note, highlighting relevant legislation, hospital policy re SL interpreter and the permission from the ‘next-of-kin’, to my father and his response was very blunt. “No” and he repeated it: “No”. He suggested that I wrote down questions (for the doctors) and he put the note in his jacket pocket.

Next day, I discussed this with the Social Worker for Deaf People (“SW”) and, with my consent, the SW wrote a letter of invitation for my father to meet the SW so she could explain the importance for a deaf family member to be provided information within the accessible format.  The invitation was apparently not taken up.

Defying my father’s instructions, I made my own way to hospital and upon arrival, I was shocked and shaken to discover that my mother, with her bed, was not there in the multi-occupancy ward. The nurse took me to a single-occupancy ward and my father said: “What are you doing here? It is your mother’s wish not to see anyone at all.”

I was not informed about my mother’s move to a single-occupancy ward and tubes (providing drugs, food etc) being removed apart from one remaining tube. It appeared to me that a decision had apparently been made to allow my mother to die.

My auntie recognised that I had been excluded from any conversations within the family, and I wished her to have done more to allow the hospital to provide a SL interpreter.

Sitting around my mother’s bed a conversation in spoken English between family members was about my regular contacts with my Auntie Sabina. My father’s sister wrote down: “Have you told everything to Vika?”. (Vika adapted very well using alternative means for us to maintain two-ways interactive conversations).

The next day, I had my final farewell with hugs and kisses to my mother, and I slowly left her room feeling very upset.

Two days later my father texted me informing me that my mother had passed away.

My request for a SL interpreter, for the funeral service, was not well received as my father pointed out that I was able to read prayers books!

My deaf friend referred me to a friendly chaplain providing religious services in signed language. The chaplain accepted my request for providing sign language interpreting.

Worst of all, I was not invited to get involved in the funeral arrangements, although I was based in the UK at the time, my involvement could have been via remote access.

At a chapel during my mother’s reposing, I was using the ‘Notes’ app on iPad for conversation, when my father’s sister instructed me to close the iPad! The time and place was not appropriate for me to challenge her.

At the formal funeral service the chaplain provided SL interpreting, enabling me to have access to information giving proper farewells to my mother – as means of thanks to her for bringing me to the world from the date I was born.

All details and names have been changed in order to maintain the privacy of everyone involved.