Guidance

Severe Disability Group test: information for clinicians

Updated 17 April 2024

What is the Severe Disability Group?

The Severe Disability Group (SDG) is a set of criteria to identify claimants with the most severe and permanently disabling conditions in order to fast track them to the higher rate of disability benefit without having to go through the usual application and assessment process. It is also anticipated that introduction of the criteria will result in a decrease in the number of people needing to undergo reassessment and a reduction in bureaucracy for clinicians.

The criteria were developed by the Department for Work and Pensions (DWP) in conjunction and agreed with an expert group of clinicians in 2021 to 2022.

The government announced the intention to test the criteria in the Health and Disability green paper. Testing at small scale started in autumn 2022 as referenced in the subsequent white paper.

Transforming support: The Health and Disability white paper - GOV.UK (www.gov.uk)

Testing is now being expanded to include a larger number of claimants.  

The SDG criteria 

In order to meet the SDG criteria, patients must :

• have an irreversible or progressive condition, confirmed or managed by a secondary care specialist, with no realistic prospect of improvement  

• have had no significant response to treatment, or treatment will not improve function, or no further treatment is planned 

• have a severe impairment of physical or mental function (or likely to develop this within 6 months) such that they need assistance from another person to complete two or more activities of daily living

• The Secretary of State is satisfied that, for the individual patient the criteria have been fulfilled for:  

  • enhanced Personal Independence Payment (PIP) daily living or mobility components   

  • functional limited capacity for work-related activity (LCWRA) or support group

Examples of social and everyday functioning that might be affected

Requires assistance from another person to:

• get in and out of bed
• rise, sit and stand
• prepare and cook food
• eat and drink
• take medication
• wash and bathe
• toilet
• dress and undress
• communicate and engage with others
• manage finances and shop
• leave the house and get around outdoors
• maintain hygiene
• plan and complete activities
• cope with change
• be aware of danger

Examples of conditions that are likely to meet the criteria (for illustrative purposes only and not to be regarded as a comprehensive list)

Cardiorespiratory conditions

• 3-vessel coronary artery disease with ongoing limiting symptoms, no revascularisation options and on maximum tolerated medical therapy
• heart failure with reduced ejection fraction on maximal possible tolerated medical therapy and cardiac resynchronisation therapy if indicated, with ongoing limiting symptoms, New York Heart Association (NYHA) 4 and not a candidate for cardiac transplant
• pulmonary arterial hypertension on optimal medical therapy with limiting symptoms NYHA IV
• severe chronic respiratory condition (e.g. chronic obstructive pulmonary disease (COPD), fibrotic interstitial lung disease, diffuse pleural thickening) with grade 5 MRC breathlessness (too breathless to leave the house or breathless when dressing or undressing)

Neurological conditions

• severe spinal cord injury with irreversible disability leading to significantly reduced mobility, bladder dysfunction and impairment of upper limb function
• severe acquired brain injury, advanced dementia or any other condition causing cognitive impairment where the person is in residential care or long-term hospital care or lives at home and assessed as requiring 12 to 24 hour supervision and unable to initiate, plan or complete simple activities of daily living such as washing, dressing or following simple instructions without assistance from another person
• motor neurone disease
• advanced Parkinson’s disease with bilateral symptoms of tremor, rigidity and bradykinesia and impairment of balance, a Unified Parkinson’s Disease Rating Scale (UPDRS) score of 21 to 30 and requiring assistance from another person with most activities of daily living
• advanced multiple sclerosis scoring more than 6 on the Expanded Disability Status Scale (EDSS)
• myasthenia gravis, which is refractory to immunosuppressive therapy, with frequent relapses requiring hospital treatment
• intractable epilepsy with associated cognitive impairment and incapacitating seizures at least once per week despite optimal medical therapy
• stroke, for example where the person requires assistance from another person to mobilise, dress and feed themselves
• any rare condition which is progressive, for example where the person needs assistance in dressing or feeding from another person

Musculoskeletal or rheumatological conditions

• late or poorly controlled systemic connective tissue diseases
• late or poorly controlled inflammatory arthritis

Cancer

• incurable cancer diagnosis, highly symptomatic where patient’s Eastern Cooperative Oncology Group (ECOG) performance status is greater than or equal to 2 with no prospect of treatment improving this significantly (that is, to performance status 0 or 1)
• incurable cancer diagnosis where no suitable active treatment options exist or remain
• permanent sequelae of cancer treated with curative intent, highly symptomatic, optimally treated by the relevant specialist team with no prospect of significant improvement where patient’s ECOG performance status is greater than or equal to 2 with no prospect of treatment improving this significantly (that is, to performance status 0 or 1)

Gastrointestinal or hepatic conditions

• treatment resistant inflammatory bowel disease
• end stage liver disease with complications, highly symptomatic, reduced functional status and unsuitable for transplant

Renal conditions

• stage 4 or 5 chronic kidney disease (CKD), highly symptomatic and reduced functional status despite or unsuitable for replacement renal therapy and unsuitable for transplant

Immune or haematological conditions

• immune deficiency, highly symptomatic despite therapy, reduced functional status
• aplastic anaemia unsuitable for transplant

Skin conditions

• severe treatment-resistant inflammatory skin disease
• genetic skin disease such as xeroderma pigmentosa or epidermolysis bullosa dystrophica

Syndromes characterised by chronic pain and fatigue

• syndromes characterised by chronic pain and fatigue where symptoms are longstanding, affect multiple activities of daily living (ADLs) and confirmation that all treatment options provided by specialist pain and fatigue services have been exhausted

Sensory conditions

• presence of combined severe hearing loss (more than 71 decibel loss) and certified as severely sight impaired (deafblind)

Multiple physical conditions

• multiple impairments, for example combinations of COPD, coronary artery disease, diabetes and obesity that would not meet the criteria as single conditions but may do so if present in combination

Mental, cognitive and intellectual impairment

• intellectual disability - meet the Diagnostic and Statistical Manual of Mental Disorders (DSM) 5 criteria for profound or severe intellectual disability (annex 1)

• autism spectrum disorders - meet the DSM 5 level 2 or level 3 criteria - requiring substantial or very substantial support (annex 2)
• longstanding schizophrenia, failing to significantly respond to all treatment or rehabilitative options, under the care of specialist psychiatric or support services, significant continuing symptoms and poor self-care requiring ongoing high levels of care and or supervision
• long term severe depression or bipolar disorder failing to significantly respond to treatment, under the care of specialist psychiatric services, indicators of unstable mood and worsening functioning requiring ongoing high levels of care or supervision including history of recurrent admissions or crisis team treatment, decreasing intervals between episodes of relapse or rapid cycling
• long term alcohol or drug dependency, despite repeated unsuccessful withdrawal attempts and treatment by specialist alcohol or substance misuse services (or lack of engagement with these services), perhaps using multiple drugs, with psychiatric symptoms and associated physical sequelae, resulting in social isolation, chaotic lifestyle, persistent self-neglect and homelessness or long term supported or residential care
• borderline or severe personality disorder with longstanding and continued engagement with psychiatric or support services, failure to significantly respond to all treatment options, history of frequent hospital admissions, episodes of repeated self-harm, comorbid drug or alcohol abuse or psychiatric illness, resulting in social isolation, chaotic lifestyle, episodes of homelessness or long term supported or residential care
• longstanding obsessive-compulsive disorder (OCD), failing to respond to treatment by intensive specialist treatment services, with severe ongoing symptoms resulting in significant difficulties with ADLs

Annex 1 DSM 5 intellectual disability severity levels

	Conceptual domain	Social domain	Practical domain
Severe	Attainment of conceptual skills is limited. The individual generally has little understanding of written language or of concepts involving numbers, quantity time and money. Caretakers provide extensive supports for problem solving throughout life.	Spoken language is quite limited in terms of vocabulary and grammar. Speech may be single words or phrases and may be supplemented through augmentative means. Speech and communication are focused on the here and now within everyday events. Language is used for social communication more than for explication. Individuals understand simple speech and gestural communication. Relationships with family members and familiar others are a source of pleasure and help.	The individual requires support for all activities of daily living, including meals, dressing, bathing and elimination. The individual requires supervision at all times. The individual cannot make responsible decisions regarding well-being of self or others. In adulthood, participation in tasks at home, recreation and work requires ongoing support and assistance. Skill acquisition in all domains involves long term teaching and ongoing support. Maladaptive behaviour, including self-injury, is present in a significant minority.
Profound	Conceptual skills generally involve the physical world rather than symbolic processes. The individual may use objects in goal directed fashion for self-care, work and recreation. Certain visuospatial skills, such as matching and sorting based on physical characteristics may be acquired. However, co- occurring motor and sensory impairments may prevent functional use of objects.	The individual has very limited understanding of symbolic communication in speech or gesture. He or she may understand some simple instructions or gestures. The individual expresses his or her own desires and emotions largely through nonverbal, nonsymbolic communication. The individual enjoys relationships with well-known family members, caretakers and familiar others and initiates and responds to social interactions through gestural and emotional cues. Co-occurring sensory and physical impairments may prevent many social activities.	The individual is dependent on others for all aspects of daily physical care, health and safety, although he or she may be able to participate in some of these activities as well. Individuals without severe physical impairments ma assist with some daily work tasks at home like carrying dishes to the table. Simple actions with objects may be the basis of participation in some vocational activities with high levels of ongoing support. Recreational activities may involve, for example, enjoyment in listening to music, watching movies, going out for walks, or participating in water activities, all with the support of others. Co-occurring physical and sensory impairments are frequent barriers to participation (beyond watching) in home, recreational and vocational activities. Maladaptive behaviour is present in a significant minority.

Annex 2 DSM 5 autism spectrum severity levels

Severity level	Social communication	Restricted, repetitive behaviours
Level 3 “Requiring very substantial support”	Severe deficits in verbal and nonverbal social communication skills cause severe impairments in functioning, very limited initiation of social interactions, and minimal response to social overtures from others. For example, a person with few words of intelligible speech who rarely initiates interaction and, when he or she does, makes unusual approaches to meet needs only and responds to only very direct social approaches.	Inflexibility of behaviour, extreme difficulty coping with change, or other restricted or repetitive behaviours markedly interfere with functioning in all spheres. Great distress or difficulty changing focus or action.
Level 2 “Requiring substantial support”	Marked deficits in verbal and nonverbal social communication skills, social impairments apparent even with supports in place, limited initiation of social interactions, and reduced or abnormal responses to social overtures from others. For example, a person who speaks simple sentences, whose interaction is limited to narrow special interests, and who has markedly odd nonverbal communication.	Inflexibility of behaviour, difficulty coping with change, or other restricted or repetitive behaviours appear frequently enough to be obvious to the casual observer and interfere with functioning in a variety of contexts. Distress or difficulty changing focus or action.

Additional notes

Balance of probability

Clinicians should base their advice on the balance of probability as to whether the patient meets the criteria for inclusion in the SDG.

Note relating to the criteria for enhanced rate of the PIP mobility component

People who have a physical condition alone affecting their ability to mobilise:

• to be eligible for the enhanced rate of the mobility component of PIP a person must be unable to move more than 20 metres reliably, either aided or unaided (including with the use of a prosthesis)
• people with bilateral lower limb amputations will always satisfy the criteria for enhanced mobility

People who have a mental health, cognitive, or developmental condition alone affecting their ability to plan and follow journeys:

• to be eligible for the enhanced rate of the mobility component of PIP a person will need to be accompanied by another person on both familiar and unfamiliar journeys on the majority of days. This may be for safety reasons (to avoid harm to the patient or another person), or to avoid overwhelming psychological distress to the patient, or because their impairment means they cannot work out where to go, follow directions or deal with unexpected changes in their journey

The role of clinicians

The current phase applies to people claiming PIP. We have developed a new, short form, similar to those used for palliative care (SR1/DS1500 form) that will be simple and quick for clinicians to complete. We need to test this form and if the testing is successful, we will aim to roll out the new simplified approach.

The test has two strands:

Clinician led

Clinicians will identify suitable patients. This is currently being tested in conjunction with Blackpool NHS Trust and the British Society of Physical Rehabilitation Medicine (BSPRM).

Department led

DWP will identify claimants who potentially meet the criteria and those who volunteer to take part in the test will be asked to provide consent to obtain medical evidence from their treating clinician.

The department led test

Process

1. DWP will identify suitable claimants from their existing caseload. That is, DWP will contact those who are likely to meet the criteria, provide details of the test, and subject to them agreeing to take part, will obtain consent to request information from their treating clinician.

2. DWP will send an SDG form to the clinician for completion. The timescale for completion is 15 working days and it would be appreciated if the form could be returned within this timescale.

3. Forms should be returned to the inbox provided on the referral form

4. The information in the SDG form will be reviewed by DWP. If the information confirms that the SDG criteria have been met, we will be able to make a longer enhanced PIP award.

Key points

For clinicians

• Clinicians may be doctors, nurses, allied health professionals (AHPs) or clinical attached social workers.

• Clinicians in either primary or secondary care may be asked to complete an SDG form although the majority of requests are likely to be to secondary care.

• SDG forms will initially be clerical and can either be returned by email (as above) or by post using the pre-paid envelope provided.

• The test will initially be at small scale and only a few clinicians will be asked to complete an SDG form.

• In a small number of cases clinicians may be contacted by DWP for additional information if required.

For claimants

• Claimants must be under 65.

• Claimant participation in the test is entirely voluntary. DWP will contact claimants and obtain their consent to take part and request further evidence from clinicians. Claimants can withdraw from the test at any time if they change their minds.

• Claimants will not be financially disadvantaged by taking part.