Current rules on deciding benefits eligibility for terminally ill are unfair and need to be reviewed
WE are deeply concerned about the impact of the current definition of terminal illness used for eligibility for benefits, including Personal Independence Payments (PIP) in Northern Ireland.
PIP has special rules for applicants with terminal illnesses, which allow people to access payments quicker and without a face-to-face assessment.
However, this avenue is only open to those who have been given a prognosis of six months or less. This restriction is unfairly excluding many people with terminal illnesses. Over 90% of people accessing PIP via the terminal illness rules have cancer, despite the condition accounting for less than a third of deaths in Northern Ireland.
This is largely because cancer has a more easily defined disease trajectory and it is easier to predict when someone is in the last six months of life, giving clinicians more confidence to sign off the benefit forms.
Many other terminal illnesses have more unpredictable trajectories and life expectancy is harder to predict accurately. Many terminally ill people, including those with Motor Neurone Disease (MND), chronic heart failure and COPD, fail to access PIP under the special rules, meaning they have to wait much longer for their payments and undergo face-to-face assessments.
This is unfair and denies people the best quality of life during the time they have left. The Scottish government has adopted a definition of terminal illness based on clinical judgment, rather than a time-bound estimation of life expectancy. We believe the situation should also be reviewed in Northern Ireland with a view to aligning with the Scottish approach.
This compassionate model will allow many more with terminal illnesses to get the help they need when they need it.
DR JOAN REGAN (medical director, Marie Curie), PHIL HUGHES MBE (director of community care, Northern Health and Social Care Trust), PROFESSOR MAX WATSON (director of project ECHO, Hospice UK), DR IAN WARWICK (executive committee member, Association of Palliative Medicine and Consultant in Palliative Medicine).
Full list of signatories
Heather Weir, Chief Executive, Northern Ireland Hospice
Dr Paul McIvor, Medical Director, Foyle Hospice
Dr Conn Haughey, Consultant in Palliative Medicine, Western Health and Social Care Trust
Professor Hugh McKenna, Dean of Medical School Development, Ulster University
Dr Chris Leggett, Chair and GP Lead, Down Integrated Care Partnership
Heather Monteverde, Head of Services in Northern Ireland, Macmillan Cancer Support
Dr Bernie Corcoran, Consultant in Palliative Medicine, Belfast Health and Social Care Trust
Dr Aine Abbott, GP and palliative medicine specialist
Anne Marie Marley, Respiratory Nurse Consultant, Belfast Health and Social Care Trust
Dr Gavin McDonnell, Consultant Neurologist, Belfast Health and Social Care Trust
Fidelma Carter, Public Health Director, Northern Ireland Chest Heart and Stroke
Cherry Ewing, Macmillan Palliative Care Clinical Nurse Specialist, Western Health and Social Care Trust
Creea Convery, Regional Care Development Advisor, MND Association Northern Ireland
Dr Jennifer Doherty, Medical Director, Marie Curie
Sandra Aitcheson, Nurse Consultant, Public Health Agency
Sue Patchett, Nurse Education Consultant, HSC Clinical Education Centre
Dr Carol Stone, Consultant in Palliative Medicine, Marie Curie
Dr Stephen Todd, Consultant Geriatrician, Western Health and Social Care Trust
Professor Sonja McIlfatrick, Head of School of Nursing, Ulster University
Dr Orla Gray, Consultant Neurologist, South Eastern Health and Social Care Trust
Dr Michael Crawford, GP, Hillsborough Medical Practice
Miriam McKeown, Hospice Manager, Marie Curie Belfast Hospice
Tara Collins, Programme Manager, Dementia NI
Dr Pauline Wilkinson, Consultant in Palliative Medicine, Marie Curie
Joyce Shaw, Service Manager Neurorehabilitation, Belfast Health and Social Care Trust
Dr Joan Fyvie, Consultant in Palliative Medicine, Marie Curie
Emma King, Macmillan Specialist Palliative Care Team Manager, Western Health and Social Care Trust
Dr Gillian Mullan, Consultant Lead Clinical Psychologist for Older People, Western Health and Social Care Trust
Dr Felicity Hasson, Senior Lecturer, Institute of Nursing Research, Ulster University
Deirdre McKenna, Senior Social Work Practitioner in Palliative Care, Southern Health and Social Care Trust
Dr Gareth Hiscocks, GP, Donagheadee Health Centre
Dr Simon Goldring, GP, Brook Street Surgery
Dr Karen Harkin, GP, Draperstown Surgery
Ria Malone, MND Specialist Nurse, Belfast Health and Social Care Trust
Dr Sheila Kelly, Consultant in Palliative Medicine (retired)
Lynn O’Hara, Community Heart Failure Nurse, Belfast Health and Social Care Trust
Dr Amy Doherty, GP, Eglinton Medical Practice
Dr Neil McKeon, GP Partner, Aberfoyle Surgery
Dr Sara Graham, GP, Brook Street Surgery
Lesley McCorry, Community Specialist Multi-disciplinary Palliative Care Team, Southern Health and Social Care Trust
Marie Morrissey, Day Hospice and Outpatient Services Manager, Marie Curie
Fiona Patterson, Community Specialist Multidisciplinary Palliative Care Team, Southern Health and Social Care Trust
Dr Joanna McCreery, GP, Brook Street Surgery
Dr Katharine Crowe, GP, Donaghadee Health Centre
Gillian Thomas, Macmillan Specialist Palliative Care Social Worker, Western Health and Social Care Trust
Noreen Watts, Community Palliative Care Sister, Belfast Health and Social Care Trust
Dr Graeme Crawford, GP, Bangor Health Centre
Dr Joanne Davis, GP, Donaghadee Health Centre
Dr Ann Donnelly, Speciality Doctor in Palliative Medicine
Colette McCullagh, Occupational Therapist, Specialist Palliative Care Team, Western Health and Social Care Trust
Dr Alyson McVeigh, GP, Donaghadee Health Centre
Ann McSorley, Macmillan Specialist Palliative Care Team, Western Health and Social Care Trust
Dr Jenny Gingles, Consultant in Public Health (retired)
Lydia Scholes, Senior Social Worker, Southern Health and Social Care Trust
Suzi Hughes, Social Worker, Southern Health and Social Care Trust
laura Millar, Social Worker, Southern Health and Social Care Trust