New guidance on terminal illness to support benefit applications

New Scottish Government guidance has been published on how doctors and nurses can help their terminally ill patients get financial help.

The guidance, from Scotland’s Chief Medical Officer, sets out the vital role doctors and nurses play, and what they should consider, in ensuring terminally ill patients get fast access to the disability benefits they are entitled to.

People who are terminally ill are entitled to the highest rates of Adult Disability Payment and Child Disability Payment.

They can apply under the “special rules” process. This fast-tracks their application as soon as we receive a ‘Benefits Assessment for Special Rules in Scotland’ form from a doctor or nurse, confirming the applicant is terminally ill.

The Department for Work and Pensions regards someone as terminally ill if they are expected to die within a year. We do not require a fixed life expectancy.

This means doctors or nurses do not need to estimate how long a patient has left to live before they can complete the forms. The different definition was brought in to ensure people who are terminally ill receive the support they are entitled to as soon as possible.

Tom McLavin, 62, is among those benefiting from the new definition. The Fife man was diagnosed with incurable cancer 18-months ago and applied for Adult Disability Payment under the special rules process. Tom said:

“Adult Disability Payment is important because having cancer is a job in itself. In an average month I’ll have blood tests at one hospital, pick up my chemotherapy pills at another and then have scans at yet another one.

“Sometimes I can take the car but sometimes I need to take the bus. If I’m suffering from nausea or having fainting spells someone has to come with me as well. It isn’t cheap.

“All credit to Social Security Scotland. Everything went through very quickly. There are forms to fill in but if you have a line from your doctor or your nurse it’s very straightforward.”

The definition of terminal illness we use was agreed after listening to organisations who support people who are terminally ill.

Amy Dalrymple, Associate Director of Policy and Public Affairs, at Marie Curie said:

“Having a terminal illness can place a huge financial burden on people and can plunge them into – or even further into - poverty simply for being too unwell to work.

“Far too often we hear harrowing stories people have faced when dealing with financial insecurity.

“We hope the publication of this new guidance will lead to greater awareness and clarity among GPs and other professionals about their role in making sure people receive financial support at end of life, and lead to more people getting the support they need.”

Background

Adult Disability Payment is extra money to help people who have a long-term illness or a disability that affects their everyday life. It replaces Personal Independence Payment people in Scotland previously delivered by the Department for Work and Pensions.

Child Disability Payment is extra money to help with the costs of caring for a child with a disability or ill-health condition. It replaces Disability Living Allowance for children in Scotland that was previously delivered by the Department for Work and Pensions.

People can apply for disability benefits online, via a paper application form or by calling Social Security Scotland free on 0800 182 2222.

People who live in Scotland and have been diagnosed with a terminal illness can apply for disability benefits under Special Rules for Terminal illness.

Under the Scottish definition of terminal illness, no time limit is set on how long a patient has left to live before their condition might be considered terminal. Registered medical practitioners and nurses use their clinical judgement to decide whether the illness is terminal. This enables their patient to apply to Social Security Scotland for disability benefits under the special rules.

To meet the Scottish definition of terminal illness the person should have an illness:

• that is advanced and progressive or with the risk of sudden death and;
• that is not amenable to curative treatment, or treatment is refused or declined by the patient for any reason and;
• that is leading to an increased need for additional care and support.

This definition of terminal illness goes beyond cancer to include all diseases and conditions that are judged to be terminal including: organ failure (respiratory disease, heart and vascular diseases, kidney disease, liver disease); neurological diseases (Parkinson’s disease, Huntington’s Disease, Motor Neurone Disease, Multiple Sclerosis); stroke; frailty with one or more co-morbid diseases; dementia; rare diseases and combinations of diseases with conditions.