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 

  1. Dr Graham Whyte, Medical Director, Marie Curie Hospice, Glasgow
  2. Professor Siddarthan Chandran, Director, Centre for Clinical Brain Sciences; Director, Euan MacDonald Centre for Motor Neurone Disease Research; Director, Anne Rowling Regenerative Neurology Clinic
  3. Dr Miles Mack, GP, Dingwall Medical Group
  4. Dr Deans Buchanan, Consultant in Palliative Medicine/Lead Clinician, Tayside
  5. Dr Elaine Stevens, Chairperson, International Association of Nurses in Palliative Care, Glasgow
    1. Alasdair Moonie, Acute Medicine and Renal Consultant, Clinical lead for Acute Medicine, Tayside
    2. Pamela Mackenzie, Director of Neurological Services and Scotland, Sue Ryder
    3. Dr Tom Fardon, consultant Physician in Respiratory and General Internal Medicine, Tayside
    4. 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

 

Online chat Chat is closed
Reopens tomorrow at 8AM