Version 2, September 2025

Introduction

Patient initiated follow-up (PIFU) gives patients control over their follow-up care, allowing them to be seen quickly when they need to, while avoiding the inconvenience of appointments that are of low clinical value. This is a key part of the focus on empowering patients and delivering personalised care in the NHS.  

The 2024/25 Elective reform plan asks systems and providers to: 

• ensure PIFU is offered as standard in all appropriate pathways by March 2026

This means offering PIFU to patients who will likely need follow-up appointments in all appropriate specialities as the standard model of care. This requires clinical input and patient understanding and acceptance, it is not solely an administrative process.

• significantly increase the uptake of PIFU to at least 5% of all outpatient appointments, including through the enhanced identification of suitable patients using AI and automation by March 2029

This updated guidance reflects the increased confidence, safety principles and scope of clinical practice in the use of PIFU. It supports the identification of patients through waiting list validation and clinical review of patients awaiting follow up appointments.

As most organisations have implemented PIFU, how to start PIFU implementation guidance can be found on the FutureNHS pages (login required). PIFU remains key to delivering a personalised outpatient model and further guidance is available on the NHS England website.

Implementation of PIFU in outpatient services should always be locally led, supported by strong system and provider leadership.

This guidance supports NHS providers to do this. It sets out the main considerations and best practice for implementation, drawn from learning from people, clinicians, services, providers and systems across England.

What is patient initiated follow-up?

Follow-up appointments have traditionally been offered at routine intervals depending on a person’s condition.

Some people might need to be seen sooner than their scheduled next appointment but do not know to get in touch with their clinical team, and even if they do, they may not be seen for several weeks.

Others may be invited to attend appointments at a time when their condition is stable, potentially causing them unnecessary inconvenience and anxiety.

PIFU describes when a patient, or carer, can initiate follow-up appointments when they need one. PIFU gives patients or their carers control over their follow-up care.

By allowing them to be the ones who initiate follow-up appointments, patients can be seen quickly when they need to be, such as when their symptoms or circumstances change, and otherwise avoid the inconvenience of appointments of low clinical value.

This is a key part of the focus on empowering patients and delivering personalised care in the NHS.  

PIFU can be used in a wide variety of specialties, for people of any age, with short and long-term conditions, and for single and multiple conditions.

This is not a new concept, and PIFU commonly goes by a number of other names, including:

• open access follow-up
• patient led follow-up
• patient triggered follow-up
• patient-initiated appointments
• supported self-managed follow-up
• self-managed follow-up, see on symptom
• open appointments
• open self-referral appointments
• patient activated care

In the context of cancer, this is often part of personalised stratified follow-up.

Within the above definition, PIFU must meet 3 minimum quality standards:

1. All patients and/or carers should be provided with appropriate and detailed information on PIFU, including condition specific information such as what symptoms to look out for that would trigger an appointment. They should be advised how, why or when to request an appointment and should easily be able to ask any questions they have. Clinicians are encouraged, where possible and appropriate, to hold a shared decision making conversation, providing patients with the opportunity to have PIFU explained to them and to ask questions.
2. A standard operating procedure (SOP) that includes patient safety nets should be in place.
3. All patients moved to a PIFU pathway should be logged and tracked on the organisation’s IT system, and the service able to report on key metrics (found in the P-EROC guidance) including the number of patients who are on a PIFU pathway.

Benefits of patient initiated follow-up

Benefits to patients

Benefits to clinicians

Benefits to providers and systems

Who is patient initiated follow-up suitable for? 

PIFU can be used for patients of any age and demographic. In some cases, it may be appropriate for the patient to share the responsibility for initiating appointments with a carer or guardian.

PIFU can be used alongside routine timed appointments if the patient requires appointments at regular intervals, but would still benefit from being able to book an appointment between these if they experience a change in symptoms. 

Individual services should develop their own guidance, criteria and protocols on when to use PIFU and be clear that it should not be used as a substitute for the appropriate timely discharge of patients.

Please see the NHS England website, GIRFT and our FutureNHS pages for speciality-specific best practice guides on patient selection and other considerations for implementing PIFU.

Below we give general guidance on patient selection. For PIFU to be able to benefit them, patients must:

• be at low risk of urgent follow-up care and satisfy criteria established by the specialty
• have the health literacy and knowledge, skills and confidence to manage their follow-up care (patient activation); if they do not, the patients may benefit from support to improve these areas in line with the personalised care approach
• be confident and able to take responsibility for their care for the time they will be on the PIFU pathway; for example, they do not have rapidly progressing dementia, severe memory loss or a severe learning disability
• understand which changes in their symptoms or indicators mean they should get in touch with the service, and how to do so
• have the devices, leaflets and apps they need to understand the status of their condition, and understand how to use them
• understand how to book follow-up appointments directly with the service, and how long they will be responsible for doing this
  • for some patients who are unable to book their appointments directly, administrative staff at their care home or GP surgery may be able to help

If the patient meets any of the following conditions, the appropriateness of PIFU for them needs to be carefully considered:

• The patient’s health issues are particularly complex.
• There are clinical requirements to see the patient on a fixed timescale (timed follow-ups), although it is important to note that a blend of PIFU and timed follow-ups can be offered (for example, for cancer pathways).
• The clinician has safeguarding concerns.
• The patient takes medicines that require regular and robust monitoring in secondary care.
• The patient is unable to contact the service easily (for example, lacks access to a telephone or internet access).

Specialties patient initiated follow-up is suitable for

PIFU is suitable across a wide range of specialities; it should be offered as the standard model of care across all that are appropriate.

From engagement and data from the Provider elective recovery outpatient collection (EROC),we know that PIFU is already in used across a high number of specialities, with 92% of PIFU activity coming from 40 treatment function codes (TFCs).

Some specialties where PIFU is being used effectively are listed below, and we know that there is increasing confidence in its use. It is particularly popular in trauma and orthopaedics and physiotherapy; these specialties nationally put nearly 600,00 and 515,000 people respectively on a PIFU pathway in across 2024/25.

Specialities with increasing usage of PIFU include:

Ensuring patient safety

Safety, effectiveness and patient experience standards must be met while PIFU is being implemented. There is no evidence to date that PIFU increases patient risk or affects service quality.

Providers and systems should adopt the following measures for selecting patients, tracking patients and safety netting.

Those that have already introduced PIFU should review their existing practice against these measures and address any identified gaps.

These should be embedded as part of the service SOP and clinical protocols.

As a minimum, providers should:

• ensure they have locally developed or adapted clinical guidance in place in each specialty where PIFU is used
  • embed sharing decision making wherever possible in their local processes to ensure that patients are fully involved in the decision on whether or not to move onto a PIFU pathway
• where decisions are made to place patients onto a PIFU pathway outside of an appointment, services must ensure they share information on what PIFU is, condition specific information including what symptoms to look out for, and contact details for patients to use to get in touch if they have any questions
  • this also requires staff to be adequately equipped to respond to queries from patients about PIFU

• embed consideration of patients’ knowledge, skills and confidence (patient activation) into the PIFU decision-making process, ensuring only patients with sufficient activation are moved onto a PIFU pathway
• ensure that patients who are on a PIFU pathway can return to a traditional timed follow-up pathway if PIFU is not working for them

Inviting appropriate patients

Historically, patients have been invited to continue their care on a PIFU pathway during a follow-up appointment.

This gives the opportunity for clinicians to explain what this means and for a shared-decision making conversation to take place.

This is the preferred process, providing patients with the opportunity to ask any questions they have and ensuring they understand how and when to request an appointment.

Patients can also be invited to a PIFU pathway without the need of a formal appointment; that is, where the patient is not present (‘asynchronously’). This may happen through validation of the waiting list of a clinical review of patients awaiting a follow up appointment.

This will release capacity, allowing clinicians to do more first appointments, reducing clinical risk and supporting patients being treated within the 18 week timeframe.

Patients who are deemed appropriate by a clinician for being on a PIFU pathway, can arrange their appointments in this way.

If services choose to invite patients to a PIFU pathway outside of an appointment the following standards must be met:

• There must be clinical approval or oversight to ensure that the patient is appropriate to be on a PIFU pathway.
• Information on PIFU, including what it is and how to arrange an appointment if needed, must be shared with the patient. This can be, for example, via a paper-based leaflet, or a link to online information. This must be written in an accessible format with health literacy in mind to ensure widespread understanding. Template patient letters are available.
• Contact details for the service must be included to enable patients to ask questions. Staff must be equipped to respond to queries and know where to escalate them if they are unsure. Questions can be answered by any trained staff; for example, administrators, nurses, etc.
• Appropriate standard operating procedures (SOPs) must be developed locally, including information on defaulting patients who do not respond or engage, back to a regular pathway.

It is recommended that services have a process to collect a response from the patient stating that they understand the new pathway and are happy to progress with that new process of care. For example, via two-way messaging or using an online form.

Tracking patients and safety nets

Tracking patients at all stages of the pathway helps ensure a safe service as well as good patient experience. It is essential that providers:

• ensure robust processes are in place to log patients who are on a PIFU pathway
  • this should include logging the review or end date for their PIFU window, so that regularly generated reports will identify those patients whose PIFU requires a review or is about to expire

Providers must ensure:

• clinicians identify patients who will need a review at the end of their PIFU window, and a process is in place to ensure that necessary reviews take place
  • patients who have been clinically assessed at their last appointment, or who have reached the end of their outlined PIFU period without activating, can be discharged without a review (an example process map is available in the SOP template)
  • GPs must be informed of the patient’s discharge
• patients on a PIFU pathway are seen at a frequency that complies with clinical guidance (for example, annual reviews for patients with some long-term conditions)
  • if patients do not initiate an appointment within that timeframe, they should be contacted and offered an appointment or be discharged where appropriate

• patients who contact the service while on a PIFU pathway have their PIFU end date reviewed and updated if necessary
• high risk patients who do not attend appointments are contacted to rebook their appointment
  • a process is in place to ensure that tests (for example, bloods, scans) are reviewed in a timely way for patients on a PIFU pathway, even if that patient does not initiate an appointment
• any incidents or near misses related to a patient on the PIFU pathway failing to initiate an appointment at the appropriate time and having poor outcomes as a result should be reported and investigated through established incident reporting mechanisms
  • learning from the outcome of such incidents should be shared across PIFU services, so any patient for whom PIFU is not appropriate is not put on this pathway

Risks to quality of care and their mitigation

Risk:

People may be moved to PIFU without having the required knowledge, skills and confidence to manage their follow-up care, leading to poor outcomes

Mitigation measures:

• Local service guidelines should include patient suitability criteria for PIFU and process to involve families or carers where appropriate; for example, when the patient has diminished mental capacity.
• The decision to go on the PIFU pathway should be, where possible, a shared decision with the patient.
• If inviting patients to a PIFU pathway outside of an appointment, detailed information on PIFU, what it is, how to activate and what to look out for (condition specific) must be shared.
• Patients should be given the option to go back to the traditional timed follow-up pathway if PIFU is not working for them.
• Staff are encouraged to check, where possible, that patients understand when and how to initiate an appointment when they are moved to PIFU.
• Report and investigate any patients who had poor outcomes when on a PIFU pathway through established incident reporting mechanisms. Learning to be shared across services.

Resources available to support:

• This guidance lists reasons why PIFU may not be suitable for a patient.
• Training available to clinicians through the Personalised Care Institute on shared decision-making and patient activation, etc.

Risk:

Patients may forget when and how to get in touch during the time they are on PIFU or they may not want to ‘bother’ services, leading to worse outcomes or added pressure on primary care

Mitigation measures:

• Send information both digitally (for example, via the NHS App, PEP, email, SMS) and hard copy.
• Monitor whether people have opened links on emails or SMS and re-send as required.
• Develop good communication resources such as patient information leaflets and videos so patients understand the PIFU process and its objectives. Include PIFU service details and contact information on provider websites.
• Keep patients’ GPs informed so they can signpost the patient to the service if required, and so that they understand when they should inform secondary care about risks; for example, if a patient is diagnosed with a new condition such as dementia.

Resources available to support:

• Rheumatology direct access information available on the United Hospitals Plymouth NHS Trust website
• Patient information leaflets and personal PIFU plans by Northern Lincolnshire and Goole NHS Foundation Trust
• GP letter template in toolkit

Risk:

Poor outcomes if people are moved to PIFU when they require timed follow-ups.

Mitigation measures:

• Local service guidelines should state which conditions PIFU can be used with, including whether PIFU can be used on its own or if it should be used in conjunction with timed appointments.
• SOPs should include processes to ensure patients on a PIFU pathway are seen at a frequency that complies with clinical guidance, e.g. annual reviews for some patients. If patients do not initiate an appointment within that timeframe, they should be offered an appointment.
• SOPs should include processes to ensure that tests (e.g. bloods, scans) are reviewed in a timely way for patients on a PIFU pathway, even if a patient does not initiate an appointment.
• High-risk patients who do not attend appointments are contacted to re-book their appointment.

Resources available to support:

• Specialty-specific guidance lists conditions suitable for PIFU and when to use it along with timed follow-up pathways; for example, rheumatology PIFU guidance, the dermatology guidance and GIRFT guidance
• SOP template, for example from Royal Surrey NHS Foundation Trust
• Locally developed clinical protocols, for example diabetes and continence from Sheffield Teaching

Risk:

Services may find it difficult to identify patients on a PIFU pathway, resulting in patients who contact the service having to wait for an appointment.

Mitigation measures:

• Record patients on the PIFU pathway on IT systems; include a date on which action needs to be taken for the patient (for example, a date to contact patient, book appointment, discharge if clinically appropriate).
• Ensure administrative teams are trained in how to identify patients on PIFU.

Resources available to support:

• SOP template includes an example of what needs to be recorded for each patient

Risk:

Patients may become disengaged with PIFU if it takes too long for them to access an appointment with the service

Mitigation measures:

• Put in place target wait times for patients on a PIFU pathway, including capacity and demand management and processes to ensure quick access for urgent PIFU appointments where slots may be difficult to find
• Record and share patient and staff experience of PIFU, including on whether they were seen in a timely manner if they made contact

Resources available to support:

• Self-assessment framework
• SOP template
• Provider SOPs, for example:
  • Royal Surrey NHS Foundation Trust
  • Walton Centre
• Patient experience guidance

Health inequalities

PIFU is likely to confer benefit on all suitable patients, including those with protected characteristics and from other vulnerable groups.

However, PIFU is not a ‘one size fits all’ approach; and if it is not implemented well – like for any intervention – there is a risk it could exacerbate health inequalities for some individuals or groups.

All groups should be given equal opportunity to be offered PIFU if it is clinically appropriate. 

Systems and providers need to consider 2 main areas when thinking about health inequalities and PIFU:

1. Selecting patients for PIFU and shared decision-making: that all groups are given equal opportunity to be offered a PIFU if it is a clinically relevant and a safe option for them taking into consideration the patient’s (or carer’s) knowledge, skills and confidence.
   • Patients moved to a PIFU pathway outside of an appointment, must be provided information on PIFU and any condition-specific information, and contact details that patients can use to get in touch and ask questions etc in an accessible format for them.
2. Ability to access service as required: that is, all groups have an easy and convenient way to access the service if they have any symptoms or concerns.

If some people are likely to struggle to contact a service, for example, because they do not have a phone or internet access, clinical teams should consider whether suitable mitigation can be put in place so that they can still be offered a PIFU.

Some people may need to be empowered and supported to increase their knowledge, skills and confidence, so that they are able to initiate an appointment if their symptoms change. 

If and when implementing digital PIFU, it is important to note patient communications needs and preferences – such as paper, telephone – and ensure these are acted on appropriately to reduce the risk of digitally excluding these patients.

Key actions for systems and providers to take to address health inequalities appropriately can be found on FutureNHS.

National and regional support

Whatever stage you are at with implementation, we recommend you contact your regional PIFU leads so that they can include you in their local support offer and connect you to organisations that have already implemented PIFU in your chosen specialties.

They can also make you aware of further guidance and support materials for PIFU. 

The National Elective Care Programme can also provide support; they run support webinars, and signpost to specialty-specific guides for PIFU, clinical advisers, investment and advice on appropriate technology, and analytical insight on existing and potential PIFU activity.

In addition, we recommend you use our practical resources on the Outpatient Recovery and Transformation FutureNHS and GIRFT pages. You will need to request access to the workspace:

• PIFU implementation plan and pre–implementation checklist
• PIFU standard operating procedure template
• Equality health impact assessment for PIFU.

You may also find it helpful to ask other providers using PIFU questions through our national PIFU forum.

Publication reference: PRN02169_i