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System frustrates terminally ill Gypsy Travellers wishing to die at home

The needs of terminally-ill Gypsy Travellers are being overlooked by hospitals and GPs in the UK, according to research carried out at the University of Warwick. 

Researchers have identified a gap in palliative care provision for English Romany Gypsy Travellers, a community which is officially classed as an ethnic minority. Dr Elouise Jesper, a General Practitioner, spent two years interviewing Gypsy Travellers and gathering data on two sites as part of her postgraduate research at Warwick Medical School at the University of Warwick. 

Current UK law means local authorities do not have a responsibility to provide official sites for Travellers and police have been given more powers to move communities on that are unlawfully camped. Dr Jesper has found this increased enforced mobility reduces access to General Practitioners and makes it difficult to organise programmes of palliative care to support Travellers who wish to die at home. 

She said: “There is a lack of planned healthcare provision for Travellers, and this includes palliative care. The lack of control over their mobility contributes to poor health and poor access to health services in addition to its indirect effects for health through availability of work and access to education". 

Dr Jesper’s research also found Gypsy Travellers preferred to die at home, but there was little support from healthcare professionals and none of the people she interviewed had actually been able to use palliative care services for their loved ones. She also found a lack of understanding of the Gypsy Traveller culture in hospitals. Poor provision for visiting family members and those with limited literacy skills all contributed to Gypsy Travellers choosing to discharge themselves from hospital early. 

Dr Jesper said: “The conflict that can arise with a hospital when a Gypsy patient has a large number of relatives was discussed at interview. The Gypsies felt such situations could be handled more tactfully or sensitively, and made suggestions such as negotiating the use of a day room for a visit.  

“The participants also described how elderly patients may feel threatened as they are unable to read and write and are sometimes reluctant to admit this. Inability to fill out menus can add to feelings of being a ‘fish out of water’”.  

Health campaigner Richard O’Neill is a Gypsy Traveller and he was keen to take part in the research. He said: “This is really useful information for Gypsy Travellers and health professionals alike who have often had to rely on information cobbled together from previous reports with further second-hand information then being shoehorned to fit an already decided agenda or outcome. This new research has got the national picture spot on.”  

Notes for editors:This research is published in Primary Health Care Research & Development, Richard O’Neill is happy to talk to press and can be contacted through Kelly Parkes, Communications Officer. 

For further information: Kelly Parkes, Communications Officer, Warwick Medical School, 02476 150483, 07824 540863 Peter Dunn, Press and Media Relations Manager, University of Warwick,, 02476 523708, 07767 655860