St Christopher’s Hospice has launched a toolkit to support people at the end of life who have no recourse to public funds (NRPF).

With funding from Hospice UK via St James’s Place Charitable Foundation, the guide has been published to better prepare migrant centre workers, social workers and welfare teams to support people with end of life or palliative care needs with NRPF status, which means they may not be able to access NHS hospital treatment and welfare such as Universal Credit and Disability Living Allowance.

People can find themselves with no recourse to public finds when their immigration status is unsettled, such as when their visa expires, or when their claim for asylum is rejected. Recent research from Citizens Advice reports a 91 per cent year-on-year increase in NRPF issues since the pandemic began.

Unmet need

“There is a completely unmet need to support many vulnerable people who have little support from the welfare state and are struggling to cope with dying, either for themselves or a loved one” Heather Richardson, joint CEO of St Christopher’s Hospice said.

“How we treat the dying is a reflection on our society. All dying people and those close to them should have access to the care and support they need, whenever and wherever they need it, and whatever their background.”

Sadly this is not always the case. ‘J’, a survivor of torture in her country of origin, had been refused asylum several times, and after being evicted from her accommodation, found herself sleeping rough at a bus station in London.

After being referred to the Helen Bamber Foundation, a charity that supports survivors of torture, she was diagnosed with cancer that had spread to her lung, spine, bowel and both legs.

This diagnosis had a devastating effect on her mental health, and her first thought was that she wanted to die.

For the 8 months that followed, J was in and out of hospital while living in temporary accommodation. The Helen Bamber Foundation supported her to find more adequate housing via the Adult Social Care Act, to meet with a Reverend to support her spiritual care needs, and to find legal representation to prepare a fresh claim for asylum, but sadly she died before this could take place.

Gaps in care

Zoe Dexter, Welfare and Housing Officer at Helen Bamber Foundation, explained that this case highlighted how severe the gaps in end of life care for people with NRPF are.

“People who have been refused asylum have no way of being able to access accommodation, and very limited financial support means that many very vulnerable people have no recourse but street homelessness and destitution, or relying on the goodwill of their community and charities” she said.  

“In J’s case, she received a bill for treatment of pneumonia when she was diagnosed with metastatic breast cancer, whilst she lay in hospital. Even if they are exempt from being charged, we know that many overseas visitors’ managers in hospitals may interpret the rules incorrectly or be unaware of all of the exemptions. This can cause huge amounts of stress and anxiety on top of an already very distressing situation.”

In the separate case of Mary and her family, their local hospice was able to help with their needs. Mary, husband Emmanuel and five-year-old son Alexander had arrived from Kenya; shortly afterwards Emmanuel was diagnosed with a brain tumour. Their asylum application was refused, leaving them with no access to many benefits.

Thankfully, the family was referred to a hospice where the social worker recognised their physical, emotional and financial needs, and helped resolve them.

The importance of partnership working

The new toolkit was put together after 18 months of research, including listening to the experiences of people living with NRPF, and collaborating with partners and specialists working in migrant centres.

In their introduction to the guide, Heather Richardson and Project Lead Claire Henry MBE emphasise the importance of partnership working between people with expertise in end of life care and those who feel confident working with people with no recourse to public funds.  

“Neither can help this group of people adequately on their own – each need the other to attend to the double disadvantage facing carers and those they care for. For this reason, the resources are written in a way that brings their two worlds together, with the person who is dying, their families and carers at the centre. This is the essence of the very best of end of life care and we hope it will encourage all involved to emulate it in their practice.”