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 some benefits, get higher payments for some benefits, and avoid a medical assessment. Clinicians, such as a GP, hospital consultant, hospice doctor or registered nurse, can be asked to provide medical evidence (SR1) for a benefit claim under the Special Rules process.

Improvement occurring to the Special Rules process in 2022

The rules are currently called the ‘Special Rules for Terminal Illness’ (SRTI) and apply to people who have 6 months or less to live.

These are changing to the ‘Special Rules for End of Life’ (SREL), which apply to people who have 12 months or less to live.

This means that from 4 April 2022 there will be a new medical evidence form, the SR1, which will replace the DS1500 form.

Patients with an estimated prognosis of less than 12 months to live

You should complete the SR1 form promptly if you believe that your patient:

  • has a progressive disease, and as a consequence of that disease you would not be surprised if your patient were to die within 12 months.

Completion of a SR1 form will support your patients’ claim to benefit.

Why DfC is making this change to the Special Rules

It is recognised that an increasing number of people are living with chronic illness and co-morbidities and that people need more support at an earlier stage when approaching the end of life. Therefore, the Department for Communities (DfC) is changing the current 6-month Special Rules criteria to a model which considers whether an individual is likely to be in their final year of life, i.e. with a 12-month time-frame.

The intent of this change to the Special Rules process is to align with the current NHS/GMC definition of ‘end of life’ which states that ‘patients are approaching the end of life when they are likely to die within the next 12 months’. One of the aims of this alignment is to bring conversations about financial support into mind when taking a holistic approach to supporting patients with advanced progressive illness, poor prognoses or terminal conditions.

Which benefits this change will affect

There is not an expectation that clinicians will know which benefit their patient is claiming.

The change will affect 5 benefits:

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

Using form SR1 to provide medical evidence

You should complete an SR1 form:

  • if requested by your patient or their representative (for example, an appointee or person with power of attorney)
  • if you would like to encourage your patient to see what financial support they may be entitled to as part of a discussion about advance care planning

It will not normally be necessary for you to examine the patient. You may use your own knowledge and the patient’s records to get the information you need.

These forms are not benefit claim forms. They are used as supporting medical evidence for a claim for benefits under the Special Rules process.

Who can complete the forms?

These forms can be completed by a registered clinician such as:

  • a GP
  • a hospital or hospice doctor
  • a registered nurse

A registered nurse needs to have acquired the expert knowledge and clinical competencies to undertake the assessment. They may be working in a role such as an advanced nurse practitioner, a Macmillan nurse, a clinical nurse specialist or a practice nurse with expertise in the management of long term conditions.

Patients who may not know the true nature of their illness

When a patient asks you for an SR1 form, please do not assume that they understand the Special Rules criteria or that these criteria may apply to them.

Third party claims

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

For 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.

We might call you if we need more information

You may be contacted by a healthcare professional working for one of our clinical assessment providers if:

  • we need clarification of some of the information on the SR1 form to help with our decision about the claim, or
  • the patient has made a claim under the Special Rules process but has not submitted an SR1 form and we need clinical information to support the claim

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

The purpose of the call is to gather more information on the patient’s prognosis and not to challenge the clinical judgement of clinicians.

Guidance for completing SR1 forms

DfC acknowledges that prognostication can be very challenging. This guidance therefore serves to assist clinicians in considering whether their patients may be eligible for benefits under the Special Rules criteria.

The SR1 forms ask for factual information and should contain details of:

  • diagnosis and other relevant conditions
  • whether the patient is aware of their diagnosis and prognosis
  • 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

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

You will not face any negative consequences, for example, if a patient who claims under the Special Rules was to live longer than expected.

Clinical indicators

Determining life expectancy in these circumstances is not an exact science. 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 whilst receiving treatment, be it ongoing or palliative treatment. In some circumstances, there may not be any treatment options available that would significantly alter prognosis. Inclusion of the relevant information on the SR1 form is likely to help your patient’s claim. Some examples can be found below:

  • no or poor response to treatment
  • best supportive care, supportive care only
  • palliative treatment or palliative care in any form including palliative chemotherapy, immunotherapy or radiotherapy
  • symptom control only
  • no further treatment planned/available
  • not amenable to curative treatment, leading to increased need for additional care and support plus decreased function and activity
  • 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
  • advanced Motor Neurone disease
  • advanced Huntington’s disease
  • end stage cystic fibrosis

This list is not exhaustive. For more general or disease-specific indicators, please refer to the following websites for more guidance:

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
Castle Court
12–56 Royal Avenue
Belfast
BT1 1HR

Tel: 028 9049 0001

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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