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Terminal illness

The central principle in our approach is to ensure that terminally ill individuals are provided with the support they need, when they need it.

Terminal illness is a complex and sensitive clinical issue. A terminal illness is regarded as a progressive disease, which can reasonably be expected to cause an individual’s death. Terminal illness includes a wide range of different diseases and individuals may have a single disease or a number of conditions at any one time.

In Scotland, registered medical practitioners will use their clinical judgment to determine whether an individual is terminally ill for the purpose of accessing disability assistance under special rules. Special rules will apply to Personal Independence Payment, Disability Living Allowance and Attendance Allowance.

Definition of terminal illness in the UK and in Scotland 

If an individual is diagnosed with, or is currently living with, a terminal illness, their application for disability assistance can be processed under special rules. This allows an individual’s application to be processed differently to other individuals. The difference that these special rules make will depend upon the disability benefits that the individual is applying for. 

In the current UK DWP Social Security legislation, a person is deemed terminally ill if they suffer from “a progressive disease and their death as a consequence of that disease can be reasonably expected within 6 months”. 

After extensive engagement with medical professional bodies, key stakeholders and the public, it became clear that the current rules may be failing individuals at their most vulnerable. Following further consultation, an amendment was lodged and unanimously approved by the Parliament on 25 April 2018, which will ensure that the definition of terminal illness for the purpose of disability assistance, will be based on the clinical judgement of a registered medical professional, removing any reference to a time-restriction. 

Purpose of the Chief Medical Officer’s guidance

The Social Security (Scotland) Act 2018 sets out that the Chief Medical Officer (CMO) will provide guidance for registered medical practitioners. This guidance will enable registered medical practitioners to make a clinical judgement about whether an illness is regarded as terminal, for the purpose of accessing disability assistance. 

The expectation is that the final document will: 

  • contain realistic and workable advice on how to make a clinical judgement about the illness being terminal for the purposes of disability assistance 
  • be informed by evidence and ethics where possible
  • take account of existing professional guidance in this clinically complex area 
  • is seen to be fair and transparent by medical practitioners, patients and their carers 
  • be fit for purpose

Future work

There has been an overwhelmingly positive response from all key stakeholders to the terminal illness provision set out in the Social Security Act.

To implement this policy change, we have created two groups: Short-Life Working Group on Terminal Illness for Disability Assistance (SLWG) and Terminal Illness Stakeholder Reference Group (SHRG)

Both groups draw together individuals and organisations with the required expertise needed to deliver this work. Further consultation and additional expertise will be requested as needs arise. 

Both groups will continue in their work until the CMO guidance is finalised and agreed.