Sipho Sibanda, a Belfast-based activist, writes about the recent loss of her infant daughter, and the huge funeral costs that followed. As people seeking asylum in the UK cannot access financial help with funerals, she argues that urgent change is needed.

A few weeks ago a buried a part of me, my daughter. She was 6 months old. My daughter was born with Trisomy 18, a condition that was life shortening.

Four days after my girl was born, she was diagnosed with a condition I had never heard of. I dived into the internet. Read everything I could find, finding hopeful and hopeless stories.

Doctors gave me their scary version. I prayed to God for a miracle. I prayed for more time with her, I needed to spend Christmas with her…I needed to see her smile at me.

My baby was 1.4kgs (3lbs) she could not feed on her own, could not breathe on her own. She was completely dependent on doctors and I just felt helpless. All I could do was love and pray for her.

First miracle happened and we went home for Christmas, then I saw my baby grow, long story short…we had 6 memorable months filled with love and smiles and lots of hospital visits.

My daughter passed away in my arms in hospital and I woke up needing to prepare for a funeral. A friend reminded me that all I needed to do was grieve, my daughter’s burial was financially taken care of. In all the madness, my friends managed to put together some money for my child’s funeral. This was a weight off my shoulders. I buried my baby. Then I saw the bill, I almost fell off my chair. There was no way on earth I would have raised that kind of money. I owe the people that put it all together for life really.

But this got me thinking, if I didn’t have any friends, if wasn’t part of the groups that I had previously campaigned with, what would have happened? What will happen to the next asylum seeker that finds themselves in the same position?

This just deepened my grief and made me realise that we need to have more conversations around death and burying our loved ones when you have “no recourse to public funds”. During the asylum process, we are not allowed to work and only give £38 a week to live on from the Home Office. But they don’t offer you any financial aid when you loose a loved one, and we are barred from accessing mainstream benefits grants that would be available to any Northern Irish person in the same situation. I guess asylum seekers are presumed to be immortal to some extent till they get status and work and afford funerals.

Last week, Derry & Strabane Council voted to has voted to waive some of the burial costs for children. The council will now cover the £52 cost of opening a grave at all council-owned cemeteries. The vote follows motions in other local councils such as Belfast, and wider moves in England and Wales. While this development is welcome, in practice the cost of a funeral is a lot more than £52 – as evidence, we see that the funeral payment from the benefits office is £700. The average cost of a funeral in the UK is £3,700.

The first council motion in Northern Ireland was proposed by Ulster Unionist Julie Flaherty, who lost her two-year-old son in 2015. She acknowledged that the £52 fee only constitutes a relatively minor reduction in the total cost, but hopes it is a small step towards much greater financial help for bereaved parents.

Across the UK, the Children’s Society notes that refugee and asylum-seeking women make up 12% of all maternal deaths, despite being only 0.3% of the population in the UK. Therefore we are more likely to need help with funeral costs, and are least able to afford them. The government created a Children’s Funeral Fund this March, but again asylum seekers cant access it. Northern Ireland needs its own fund, but one that all who live here can access.