Terminal illness
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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 or registered nurses 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 apply to Child Disability Payment, Adult Disability Payment and, when it's introduced, Pension Age Disability Payment.
Definition of terminal illness in the UK and in Scotland
If an individual is diagnosed with, or is currently living with, a terminal illness under the Scottish definition, 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 assistance that the individual is applying for.
In the UK Department for Work and Pensions (DWP) Social Security legislation, for disability assistance, a person is deemed terminally ill if they have 'a progressive disease and their death as a consequence of that disease can be reasonably expected within six months'. The UK government has made a commitment to change the time limit from six months to twelve months. This change has taken place for Universal Credit and Employment and Support Allowance from 4 April 2022, and will be implemented for Disability Living Allowance, Personal Independence Payment and Attendance Allowance in due course.
It is important to note that the DWP definitions will still apply to reserved benefits. Personal Independence Payment, Disability Living Allowance and Attendance Allowance require the completion of a DWP DS1500 form, while Universal Credit and Employment Support Allowance now require completion of a DWP SR1 form.
Unless you already have a DS 1500 or SR1 form, Scottish disability assistance requires completion of the BASRiS form, which confirms that a registered medical practitioner or registered nurse states that you meet the definition of having a terminal illness.
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 CMO guidance:
- contains realistic and workable advice on how to make a clinical judgement about the illness being terminal for the purposes of disability assistance
- is informed by evidence and ethics where possible
- takes account of existing professional guidance in this clinically complex area
- has been designed to be fit for purpose and fair and transparent for medical practitioners, patients and their carers
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 and in Adult and Child Disability Payment regulations.
To ensure the smooth implementation of the new terminal illness definition, for the purposes of accessing disability assistance in Scotland, we created The National Implementation Group.
This group draws together clinicians, individuals and organisations with the required expertise to help ensure the guidance is applied appropriately.
We will continue to work with the group to help identify and address any issues which emerge as we continue to introduce and develop disability assistance in Scotland.
Policy position papers
We have published a series of social security policy papers setting out our position on the development of the devolved benefits in Scotland.