Call for a dignified benefits system for terminally ill Scots
Press release published
Marie Curie and MND Scotland, supported by 20 Scottish organisations, are calling for a fairer benefits system for terminally ill people. This is in response to a proposed amendment from Scottish Government to the Social Security (Scotland) Bill. The proposed amendment defines someone with a terminal illness as having six months or left to live.
Responding to the discussion on this at First Minister’s Questions on 19 April, Richard Meade Head of Policy and Public Affairs Scotland said:
“We have always said that we would like to see a definition of terminal illness based purely on clinical judgement. Last 6 months of life is not good enough as it means far too many people miss out. Extending the definition to last 2 years gives more terminally ill people the chance to the get the benefits they need quickly and in a dignified way. For the social security system to work we need a system that ensures that terminally ill people who need help get it as fast and as easily as possible.”
On Wednesday 25 April Scottish Parliament has the chance to make sure that more people with a terminal illness experience a more dignified social security system. We’re asking everyone to email their MSP and ask them to vote for a fairer system for terminally ill people. Find out more about this campaign and how to get involved.
Dear Editor
We support the amended new Social Security (Scotland) Bill which defines terminal illness as the last two years of life. It will allow more terminally ill people to access the benefits they need quickly and in a fair and dignified way. We now urge all of Parliament to vote against the Scottish Government’s proposed six month definition as the Bill proceeds through Stage 3 and into law.
We are deeply concerned that the current Department of Work and Pensions (DWP) system being proposed requires people to prove that they have six months or less to live in order to receive benefits under the ‘special rules’ for terminal illness. This would limit the number of terminally ill people in Scotland able to access social security quickly and easily.
The current system only works for people with some terminal diseases. Over 90 percent of people accessing the Personal Independence Payment (PIP) because of a terminal illness, have cancer. This is largely because cancer has a clearly defined disease trajectory and it is easier to predict when someone is in the last six months of life, giving clinicians confidence to sign off the benefits forms.
Six months life expectancy has no clinical meaning in most terminal illnesses, because there is no clearly defined disease trajectory. As a result, many terminally ill people, including those with Motor Neurone Disease (MND), heart failure and chronic obstructive pulmonary disease (COPD) fail to access benefits under special rules, meaning they have to wait much longer for their benefits and go through face-to-face assessments.
With this amendment Scotland is leading the way. It will allow more terminally ill people to receive benefits quickly, fairly and in a more sensitive way, moreover it will support best clinical practice by supporting clinicians to begin conversations about death, dying and bereavement earlier, and so help to support better care with greater planning.
We believe that a terminal illness definition based on clinical judgement and the need of the patient would be ideal to support the administration of social security benefits in Scotland. If, however, terminal illness must be defined in terms of life expectancy then two years would cover many more terminally ill people than the current system.
Yours sincerely
- Dr Graham Whyte, Medical Director, Marie Curie Hospice, Glasgow
- Professor Siddarthan Chandran, Director, Centre for Clinical Brain Sciences; Director, Euan MacDonald Centre for Motor Neurone Disease Research; Director, Anne Rowling Regenerative Neurology Clinic
- Dr Miles Mack, GP, Dingwall Medical Group
- Dr Deans Buchanan, Consultant in Palliative Medicine/Lead Clinician, Tayside
- Dr Elaine Stevens, Chairperson, International Association of Nurses in Palliative Care, Glasgow
- Alasdair Moonie, Acute Medicine and Renal Consultant, Clinical lead for Acute Medicine, Tayside
- Pamela Mackenzie, Director of Neurological Services and Scotland, Sue Ryder
- Dr Tom Fardon, consultant Physician in Respiratory and General Internal Medicine, Tayside
- John Duncan, Chair of the Scottish Respiratory Nurses Forum
10. Dr Karen J Hogg, Cardiology Consultant, Glasgow Royal Infirmary
11. Dr Clare L Murphy FRCP Consultant Physician and Cardiologist, Greater Glasgow & Clyde
12. Nick Hartshorne-Evans, Chief Executive, Pumping Marvellous Foundation
13. Paul Forsyth, Lead Pharmacist, Clinical Cardiology/Heart Failure Specialist, West Glasgow Ambulatory Care Hospital
14. Maureen Melvin, Advanced Nurse Practitioner - Heart Failure, Greater Glasgow & Clyde
15. John Carson, Lead Nurse, Heart Failure Service NHS Greater Glasgow & Clyde
16. Dr Ronnie Burns, lead GP Greater Glasgow & Clyde Cardiac Managed Clinical Network
17. Dr Colin Selby, Consultant Respiratory Physician
18. Dr Shona Jenkins, Consultant Cardiologist, NHS Greater Glasgow & Clyde
19. Margaret Somerville, Director of Services, Chest Heart & Stroke Scotland
20. Mary Cowan, Clinical Services Manager, Kilbryde Hospice
21. Gordon McHugh, Chief Executive Officer, Kilbryde Hospice
22. Dr Monica Doyle, Consultant Physician with a special interest in Critical Care, Tayside
23. Achyut Vallauri, Consultant in Acute Medicine - Clinical Lead for Postgraduate Training & Educational Supervision, Tayside
24. Dr Ian Morrison, Consultant Neurologist, Tayside
25. Douglas Lowdon, Consultant in Acute and Elderly Medicine, Tayside
26. Elaine Henry, Consultant Gastroenterologist, Tayside
27. Richard J Davenport DM FRCP Edinburgh, Consultant Neurologist, Chair of National Advisory Committee for Neurological Conditions
28. Dr Fiona Walker, Associate Specialist working in the Palliative Care service, Fife
29. Dr Eleonora Saturno, Consultant Neurologist, Clinical Lead for Neurophysiology, Fife
30. Dr Juliet Spiller, Consultant in Palliative Medicine, Marie Curie Hospice Edinburgh
31. Professor Scott A Murray, St Columba's Hospice Chair of Primary Palliative Care, The University of Edinburgh
32. Di Rennie, Chair of the Scottish Non-Malignant Palliative Care Forum
33. Dr Susan Chater, St Columba’s Hospice, Edinburgh
34. Dr Rachel Kemp, Medical Director, Marie Curie Hospice, Edinburgh
35. Dr Duncan Brown, Medical Director, St Columba’s Hospice, Edinburgh
36. Dot Partington, Clinical Services Director, St Columba’s Hospice, Edinburgh
37. Becky Chaddock, Head of Supportive Care, St Columba’s Hospice, Edinburgh
38. Dr David Simpson, NHS borders
39. Gill Dennes, Advanced Nurse Practitioner Pittenweem & Elie Medical Practice, Fife & Clinical Lead for Fife Respiratory MCN
40. Mark Francis, Consultant Cardiologist, NHS Fife
41. Elaine Lee, Heart Failure Nursing Team Leader, NHS Grampian
42. Joel Rose, Chief Executive, Cardiomyopathy UK
43. Professor John Cleland, University of Glasgow
44. Janet Reid, Vice-Chair Scottish Heart Failure Nurse Forum
45. Michelle Duffy, Advanced Practice Respiratory Nurse, NHS Highland
46. Barry J A Laird, Senior Lecturer in Palliative Medicine, Institute of Genetics and Molecular Medicine, University of Edinburgh
47. Katrina Flannigan, Advanced Nurse Practitioner - Respiratory Care, Lorn & Islands Hospital, Oban
48. Betty Graham, Advanced Nurse - Cardiac Care, Lorn & Islands Hospital, Oban
49. Professor D. Robin Taylor, Consultant Respiratory Physician, University Hospital, Wishaw
50. Maureen Fagan, Lead Respiratory Specialist Nurse, NHS Tayside (Angus)
51. Professor Chim C Lang M.D. FRCP FRCPE, Chair, Heart Failure Working Group, CHD Managed Clinical Network, Tayside
52. Elinor Brabin, Consultant in Palliative Medicine, Tayside
53. Dr Claire A Douglas, Consultant in Palliative Medicine / Honorary Senior Clinical Teacher, Perth
54. Dr Angela Bentley, Consultant in Palliative Medicine, Lothian
55. Gill Chadwick, Macmillan Lead Cancer Nurse and Lead Cancer Clinician, NHS Western Isles
56. Maureen Fagan, Lead Respiratory Specialist Nurse, Tayside
57. Fiona Byng, AHP Team Lead, Inverclyde Physical Disability Rehabilitation Service
58. Lorna Stewart, Community Complex Care Manager, Fife