The Special Rules: how the benefit system supports people nearing the end of life

The Special Rules allow people nearing the end of life to get faster, easier access to certain benefits, to get higher payments for certain benefits, and to avoid a medical assessment.

What the special rules are for

An adult or child is nearing the end of life when they are likely to have less than 12 months to live.

If a person is likely to have less than 12 months to live, they can make a fast-tracked claim to the following benefits (for which they are eligible):

  • Personal Independence Payment (PIP)
  • Universal Credit (UC)
  • Employment Support Allowance (ESA)
  • Disability Living Allowance (DLA) for children
  • Attendance Allowance (AA)

The role of clinicians

Clinicians can be asked to provide medical evidence on an (SR1) form to support a benefit claim under the Special Rules.

The SR1 form has replaced the DS1500 form.

A clinician should complete an SR1 form promptly if they believe that their patient:

  • has a progressive disease, and
  • as a consequence of that disease, it would not be a surprise if their  patient were to die within 12 months.

A clinician may be:

  • a GP
  • a consultant
  • a specialty doctor
  • a hospice doctor or
  • a senior specialist nurse (such as a clinical nurse specialist, advanced nurse practitioner or similar)

The Special Rules apply to anyone who may be nearing the end of life due to age or illness. There are no negative consequences for the clinician or patient if a patient who claims under the Special Rules lives longer than expected.

Aligning welfare and health services

The 12-month, end of life approach used in the Special Rules means that the Department for Communities (DfC) is aligned with the NHS, where the definition of ‘end of life’ states that ‘patients are approaching the end of life when they are likely to die within the next 12 months’.

Clinicians are encouraged to identify patients who have reached the final year of their life and use a holistic approach to consider the support that their patient may require at this point. The alignment of the definition across welfare and health services allows clinicians to include conversations about financial support in wider conversations about what matters most to their patient, thus being more responsive to their needs.

Providing medical evidence using the SR1 form

It is important that you know about your patient’s condition.

It may be appropriate to complete an SR1 form:

  • as part of an assessment about current social and financial issues
  • if requested by your patient or their representative

Patients who may not know the true nature of their illness

If a patient asks for an SR1 form to be completed, please do not assume that they understand the Special Rules criteria or that these criteria may apply to them. It could be an opportunity to explore their understanding of their condition, begin a discussion about advance care planning or document what matters most to them. All claims made under Special Rules are processed in a compassionate and appropriate manner.

Completing the SR1 forms

The SR1 forms ask for:

  • diagnosis / diagnoses and other relevant conditions
  • date of diagnosis
  • whether the patient is aware of their diagnosis and prognosis
  • date your patient is thought to meet the Special Rules
  • clinical features that indicate a severe progressive condition (for example, investigation results, staging if appropriate etc.)
  • information about treatment that has been received, or is ongoing or is planned

The date that your patient was first thought to meet the Special Rules criteria may be the date of diagnosis, the date the form is being completed or some alternative date in between. Providing this information will allow DfC to ensure your patient receives payment from the correct date.

You do not need to give a specific prognosis. Please use language that you would normally use when communicating with other clinicians.

Using clinical indicators

Determining life expectancy in these circumstances is challenging.

The following indicators may suggest that a patient is eligible under the Special Rules:

  • advanced, progressive illness
  • worsening symptoms despite optimal treatment or management
  • (severe) degenerative condition
  • deterioration of incurable condition
  • rapid decline
  • metastatic disease
  • inoperable cancer
  • severe frailty
  • death is imminent, death is inevitable
  • a high risk of sudden death with an underlying deteriorating condition

Some patients may be eligible for Special Rules when receiving ongoing or palliative treatment. In some circumstances, there may not be any treatment options available that would significantly alter prognosis.

Your patient’s claim is likely to be helped if you include relevant information such as:

  • no or poor response to treatment
  • palliative treatment or palliative care in any form including palliative chemotherapy, immunotherapy or radiotherapy
  • receiving symptom control and / or psychosocial support only
  • no further treatment planned/available
  • treatment is declined
  • treatment ongoing but unlikely to alter prognosis

The Special Rules criteria do not only apply to patients with cancer. They also apply to other severe, life-limiting conditions, such as:

  • end stage respiratory disease (e.g. COPD, pulmonary fibrosis)
  • end stage heart disease
  • end stage dementia
  • severe frailty
  • end stage liver disease
  • end stage renal failure
  • end-stage neurological disease (e.g. Motor Neurone disease, multiple sclerosis, Huntington’s disease)
  • end stage cystic fibrosis

This list is not exhaustive.

You can find information about general or disease-specific indicators, palliative care initiatives and NICE guidelines on the following websites:

What we will do if we need to clarify any information

DfC relies on the judgement of clinicians when they complete an SR1 form.

However, a clinician may be contacted by a practitioner working for one of our clinical assessment providers if:

  • information provided on an SR1 form needs to be clarified to help with a decision about the claim, or
  • an individual has made a claim under the Special Rules but has not submitted an SR1 form and clinical information is required to support the claim

Because we need to deal with these claims urgently, the practitioner will usually make contact by phone.

Who can make claims on behalf of patients?

For claims to UC and ESA, only an appointee or person with power of attorney can make a third-party claim on the patient’s behalf.

For claims to DLA, PIP and AA, any person representing the patient can make a third party claim on their behalf, even if the patient is unaware that a claim is being made. In this circumstance the form should be issued to the person that requested it.

What to do with a completed SR1 form

You can return the SR1 form by post.

If you are a GP or GMC registered consultant, you can claim a fee for completing a SR1 form, which will be paid into your bank or building society account.

If you have completed a SR1 form or fee form, please ensure you sign it. Only original signed copies of these forms will be accepted by post.

There are 2 options for returning the forms to us:

  • give the SR1 form to the person (your patient or their representative for example, an appointee or a person who has power of attorney) who asked you to complete it and return the fee form separately to us, or
  • send the completed SR1 form and fee form to us

When returning SR1 forms, please ensure a separate envelope is used for each individual patient. Please do not staple documents together.

Please send the completed SR1 form to:

Disability Carers Service
PO Box 42
BT49 4AN

Tel: 0800 587 0912

How to get blank SR1 forms

GP Practices can place an order for the Blank SR1 forms via the online ordering service from the Business Service Organisation Procurement and Logistics Service (PaLS).

Should you have any queries concerning this service, please contact the PaLS Customer Helpline Team on 028 9536 1301.

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