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Maire Curie-MND Scotland – Social Security Stage One Briefing

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Maire Curie-MND Scotland – Social Security Stage One Briefing Social Security Briefing Proposed amendment to the Social Security (Scotland) Bill Our call for change 1. In 2012, the UK coalition government introduced its Welfare Reform Act. This Act requires terminally ill people to prove they have 6 months or less to live in order to receive benefits under a ‘special rules’ system, which includes ‘fast tracking’ the claimant. Since then, many terminally ill people have faced serious obstacles when trying to access urgently needed benefits. 2. Currently, to be fast tracked for benefits, terminally ill people must have a Department for Work and Pensions (DWP) DS1500 form completed by their clinician, who must confirm s/he has just 6 months or less to live. However, 6 months life expectancy has no clinical meaning in most terminal illnesses. The system only works for people with terminal cancer, because cancer has a clearly defined disease trajectory. As a result, many terminally ill people, including those with Motor Neurone Disease (MND), heart failure, dementia, and chronic obstructive pulmonary disease (COPD) fail to access the benefits under ‘special rules’, including the fast track system. 3. Launching the first Social Security Panels report, the Social Security Minister stated “This report reinforces…that the UK system does not treat people well and there is a great deal to improve on.” 4. However, in response to questions about the 6 month terminal illness definition from the Scottish Parliament’s Social Security Committee, she stated “At this point, I am not minded to move beyond what we currently have, but I am open to other representations.” 5. We are deeply concerned that the 6 month rule will be adopted in Scotland. We believe that a terminal illness definition based on need should be introduced to support the administration of social security benefits in Scotland. If, however, terminal illness must be defined in terms of life expectancy then it should be defined as 24 – 36 months. This would allow people with terminal illnesses other than cancer, such as MND, to access the support they need quickly and in a fair and dignified way. This definition should be included on the Bill. We do not believe it should be left to regulation. MND Example MND is a rapidly progressing terminal illness, for which benefits are urgently needed. However, 6 month life expectancy has no clinical manifestation in MND. Clinicians cannot confidently predict if someone with the illness has 6 months or less to live because there is no standard disease trajectory for MND. Understandably, many clinicians won’t complete the DWP DS1500 form. Those who do, find their prognosis quizzed by the Independent Assessment Service (formerly ATOS), and sometimes rejected. If a person with MND cannot obtain a DS1500 and access benefits under the DWP special rules fast track system, s/he faces up to a 9 month wait for benefits under the current system – almost half the current average life expectancy, from diagnosis, of someone with MND – and a face-to- face interview with an assessor. Average life expectancy with MND, from diagnosis, is 20 months. Defining terminal illness as 24- 36 months would be supported by MND clinicians in Scotland, and allow them to routinely fast track their patients with MND for benefits. 1 6. The Cabinet Secretary and First Minister have publicly committed to fast tracking benefits for terminally ill people. We would hope that Scotland can improve on the UK Welfare Reform ‘fast tracking’ system that fails so many people with terminally ill conditions other than cancer. The current system 7. The current definition of terminal illness used to support social security benefits is set out in the Welfare Reform Act 2012, and stipulates a person is terminally ill if they are in the last six months of life. 8. This definition is used to determine eligibility for special rules for terminal illness for Department of Work and Pensions (DWP)’s current social security benefits. 9. Under the current system if a person is eligible for social security under special rules they will not have to wait for the three month qualifying period to get Disability Living Allowance or Personal Independence Payment (PIP). And they don't have to wait for the six month qualifying period to get Attendance Allowance. 10. Under the special rules a person is asked for a DS1500 report from a clinician, which states they have a terminal illness and this goes to the DWP and if approved means that the applicant does not require any further assessment. 11. Depending on which benefit a person is claiming, they will automatically qualify for the: o highest rate of the Disability Living Allowance care component o enhanced rate of the Personal Independence Payment daily living component higher rate of Attendance Allowance 12. Under the special rules, a person will normally get their first payment within 2 weeks of applying. The special rules also mean a person will get paid weekly in advance and not monthly and in arrears. 13. If a person is not eligible for special rules a. they must apply in the normal way with the qualifying periods set out above and normal waiting times for the benefit. b. face a much more intrusive face-to-face assessment based on a person’s ability to perform 12 activities, 2 of which are mobility based. c. receive their benefits monthly and in arrears d. in practice, wait up to 9 months for their benefit. 14. Delays in accessing PIP lead directly to delays in payment of Carers Allowance, access to the Blue Badge, motability care scheme and increased premiums to means tested benefits such as housing benefit, council tax reduction benefit, income related ESA, income support and tax credits. 15. A DS1500 currently, enables a terminally ill person under 65, to access free personal care. The Evidence for Change 16. A definition of terminal illness that only includes those in the last six months of life unfairly excludes many people living with terminal conditions from accessing the benefits quickly, from the point of need. 17. At present, the system of special rules is only working for people with a terminal cancer diagnosis. Statistics from the DWP show that that 95% of people accessing PIP via the special rules for the terminally ill have terminal cancer1. This shows that there are flaws with the 1 https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/434838/pip-stats-apr-2013-apr-2015.pdf 2 current system, which Scotland has an opportunity to get right in developing its own fairer definition of terminal illness. 18. Some consultants, GPs, nurses and other health professionals are unwilling to sign a DS1500 form for a patient unless they are confident that they are in the last six months of life. 19. There are many terminal conditions where it can be difficult to predict precisely when a person has entered the last six months of life. The chart below provides examples of different trajectories, illustrating how some can be stable and predictable, but others can include episodes of decline and recovery. A person may be expected to live for two or three years with their terminal illness, but may die within six months of that prognosis being given, due to a sudden decline in their condition. Cancer Organ failure Frailty/dementia Death could also occur at any of these points 20. For those with illnesses like MND, there is no standard disease trajectory. For those diagnosed with advanced forms of heart failure, nearly 90% die within one year. Average life expectancy from diagnosis, with MND, is 20 months. These terminally ill patients should not be expected to apply for benefits under the normal route. MND Scotland states that accessing PIP without a DS1500 can take up to 9 months. 21. For a person who is terminally ill and whose condition will never improve, but only deteriorate until their death, not being able to access benefits quickly, facing a lengthy qualifying period and having to go through an intrusive face-to-face assessment process is unfair and undignified. 22. Defining terminal illness as 24 – 36 months will allow people living with a terminal illness to access the social security they need quickly in a more dignified way and at a level that will support them, as their health deteriorates. It will support them to live their life as well as possible in the time that they have left. It will also give health professionals the confidence to complete DS1500 forms for patients whose terminal prognosis is clear but actual life expectancy is difficult to predict, as well as those with longer life expectancy, but at risk of an earlier death. 3 Organisations supporting our position: Further Information Richard Meade Susan Webster Head of Policy & Public Affairs, Scotland Head of Policy & Campaigns Marie Curie MND Scotland 14 Links Place 2nd floor, 6 Eagle St Edinburgh EH6 7EB Glasgow G4 T: 0131 5613904 T: 0141 332 3903 E: [email protected] E: [email protected] 4 .
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