Good communication with patients waiting for care

October 2023, Version 3


Good patient communication is key, particularly when a patient is waiting for planned care or treatment. From referral by a primary care clinician through to discharge from secondary care – clear, accessible communication is vital throughout.

The Elective Recovery Delivery Plan commits to providing better information and support to patients. As we begin to implement new, innovative ways of delivering healthcare, it is more important than ever that patients feel confident they are supported throughout their journey.

Prolonged periods of industrial action and continuing pressures have inevitably had an impact on planned care. In this context, it is important that integrated care boards (ICBs) and providers do all they can to offer support to those affected by delays, including with patient communications.

This guide sets out key communication principles to help providers deliver personalised, patient-centred communications. It includes considerations for communicating to patients about new models of care as well as helpful information and resources.

Communicating with patients waiting for planned care – key principles

Good patient communication should start from the first point of contact with the NHS. The following principles should be applied to all communication with patients, particularly those on an elective care pathway. We also need to be mindful of the specific communications and support needs of those who are waiting to receive a diagnosis.

Providers and their boards must ensure these are applied consistently and equitably across their services and populations. Helpful resources are provided in Appendix A.

You can also download a version of these principles here.


Your communications should give clear, easy to understand steps for the patient’s care, including likely and honest appointment timescales, and what they can expect to happen and when. It is also important that patients fully understand their diagnosis and the department they are in contact with. This will help reduce anxiety and enable the patient to have an informed discussion about their treatment.

Patients need to fully understand how their care and treatment will be delivered and the implications of any of their decisions on this; providers should welcome and encourage questions from patients. When communicating with patients, you should consider the differing needs of your population including:

  • health inequalities, e.g., factors that will influence a patient’s need for care and their ability to access it
  • needs of people with protected characteristics in line with the Equalities Act 2010 (this includes their preferred means of communication)
  • their capacity to make a decision based on part one of the two-stage test of capacity under the Mental Capacity Act
  • the accessibility and understandability of information for patients – medical terminology may need to be explained in every day terms
  • literacy levels
  • language translation – both written and spoken
  • reasonable adjustment requirements such as easy read appointment letters

Patients should be signposted to resources that will help prepare them for conversations about their care and any additional support they may require. This could be leaflets sent out with appointment letters, links to charity or partner websites, or signposting the information available on My Planned Care. Patients who are digitally excluded should be identified and provided with support to help make informed decisions. Patients should also be informed on what information they will need to bring to their appointments, i.e. appointment letters, details of medicines etc.

Some patients may qualify for help with their health costs. Information should be made available in alternative formats i.e., easy read and in different languages upon request.

Information and communications must comply with the Equality Act 2010 and reflect the accessible information standard. This includes making sure that advice for patients on preparing for appointments/treatment is accessible in several different formats.

Reasonable adjustments

People with disabilities have a right to ask for reasonable adjustments to their care. Every person is different and will need different changes. Some common examples of reasonable adjustments include:

  • staff using accessible language
  • flexibility in appointment times
  • longer appointments
  • a hospital and care passport so that the person can share information about their needs and wishes
  • easy read and plain English written information
  • enabling carers to accompany people at their appointments

All organisations that provide NHS or adult social care must follow the Accessible Information Standard. The standard aims to make sure that people who have a disability, impairment or sensory loss are provided with information that they can easily read or understand, so they can communicate effectively with health and social care services. You should try to be ‘anticipatory’, meaning you should think about what is likely to be needed in advance and plan accordingly.

Clear language

Language should be clear, accessible, and easy to understand. This should apply to written and verbal communication with patients. Simple tools like the Flesch Reading Ease Score, available on Microsoft Word, can help with this.

Acronyms and technical terms should be avoided. If they are needed, they should be explained. Try to avoid language that may put patients off from discussing their care.

It is good to consider different ways to receive feedback, i.e. via patient experience surveys, to see if patients find the information they are given accessible or if it can be improved.

Shared decision making (SDM)

Patients should be supported to understand their care, treatment and support options and risks, benefits and outcomes of these options. It is important they have access to the relevant information so they can make informed decisions that are right for them. Decision support tools are available to support shared decision making for a number of conditions and procedures.

Patient initiated follow up (PIFU) is an example of when patients are moved on to a pathway where they are in control of next steps, so it is important they understand how the process works.

Contact point for patients

You should make it easy for patients to quickly get information about their upcoming care and to raise any questions. Reasonable adjustments and inequalities should be considered, including alternative options for any patients with specific language or communication needs.

Providers may approach this using various solutions. You may direct patients to the Patient Advice and Liaison Service (PALS), have a dedicated contact centre, or assign individual healthcare professionals as a contact.

For all these options, patients should be clear on the department they are in contact with, opening hours for the service and they should be able to leave a message out of hours. An alternative email should also be available, and this inbox should be regularly checked to ensure patients receive a timely response, i.e., within 48 hours.

Patient groups strongly support the creation of a Single Point of Contact (SPOC) and would like to see every trust working towards this.

Managing appointments, delays and cancellations

As part of the shared decision making process, if treatment is subject to delay, withdrawn or the patient decides not to go ahead, then alternative options should be discussed.

When an appointment needs to be rescheduled it is important to be clear about why the decision was made. Ideally a new appointment will be communicated at the same time, however, the NHS constitution states a new appointment date should be communicated within 28 days.

If the next steps are uncertain or there is likely to be a long delay, open and honest communications will help manage expectations.

The patient should always be clear on which part of the organisation is contacting them to change their appointment. Some patients may be in touch with various departments for multiple conditions, so we need to make it as easy as possible for them to contact the right place if they have any concerns.

We know any delay to a patient’s appointment can impact their physical and mental wellbeing. It is helpful to acknowledge this delay in communications and, where appropriate, you should signpost to materials that can help the patient manage their condition as well as highlight mental health support. Many providers will have developed this information as part of their trust specific pages on the My Planned Care website It should be clear to patients who they should contact if their condition deteriorates.

Interim information and services

While a patient waits for an appointment, diagnosis or care, you should provide them with supportive, accessible information to them to help them manage their symptoms or condition. This includes signposting helpful information and resources available from voluntary, community and social enterprise sector organisations.

The health and wellbeing pages on the My Planned Care website include information and resources for patients on a wide range of topics including: preparing for your operation, looking after yourself and your mental health while you are waiting, and how you can check and manage risks relating to existing conditions that might affect your planned treatment and care.

Providing information to patients about the practical steps they can take to be as fit and healthy as possible before a planned procedure or operation and signposting them to relevant support can help patients to be active partners in their own health while they are waiting.

Communicating appointment type

We are moving away from delivering care in traditional ways. We now offer virtual and group outpatient appointments, and PIFU allows patients to book an appointment when they feel it is required. The patient should be aware of the pathway they are on and understand how it works.

Clear, concise information should be provided on how to prepare for the appointment, particularly where this will take place remotely. For phone appointments, the patient’s phone number should be confirmed. Patients should know how to update this if they change numbers. For video appointments, patients should be advised what equipment they will need and how to set this up to get the most out of the appointment. A guide for patients, including translated versions, is available. You can also tailor these FAQs for your patients.

Further resources including a video consultation toolkit, patient leaflets and animations are available here.

Patient Initiated Follow Up (PIFU)

PIFU allows patients to arrange their follow up appointments as and when they need them, rather than at routine intervals.

Shared decision-making must be used to ensure that patients are fully involved in the decision to be moved onto a PIFU pathway. PIFU must not be used to move people off the waiting list without a shared decision-making conversation. During this discussion the patient should be advised of the purpose and benefits of PIFU and when, and how, to get back in touch with the service if they need an appointment.

The decision to place a patient on a PIFU pathway should be confirmed to the patient in writing in a way they understand (in accordance with the Accessible Information Standard). This should clearly state the duration they will remain on PIFU, how to arrange an appointment if they need one and include contact details in line with the principles set out above.

The patient should be reminded at regular intervals when their PIFU is due to expire, and confirmation sent once their PIFU has ended advising them to return to their GP if they need further care and support. Template patient letters and other practical patient facing resources are available here.

It is a good idea to socialise PIFU on other communications channels such as on your website. This provides patients with somewhere to find out more information if they need it. Draft web content, and other editable communications materials are available in the PIFU campaign toolkit.

Specialist Advice (including Advice and Guidance)

Specialist advice enables GPs to seek the opinion of a subject matter expert, ahead of, or as well as making a referral to secondary care.

Patients have told us they would like clearer information about specialist advice. It should be clearly explained to the patient by the primary care clinician when specialist advice is being sought and what that means for the patient. To support interactions between the clinician and patient, further information should be shared e.g. in the form of a patient leaflet, FAQs or on relevant webpages. Example patient information and resources are available in the Specialist Advice Toolkit.

Patient choice

In many cases patients have the right to choose their healthcare provider when being referred for treatment into secondary care.

At the point of referral, the referring clinician should discuss with the patient what matters most to them. This could be going to a hospital with the shortest waiting times, a provider close to family and friends or looking at ratings from the Care Quality Commission (CQC). The patient should then be offered a minimum of five, clinically appropriate, options. They can make their decision during the appointment or can decide to take time to consider their options.

If you know they have access to online services, the patient should be sent a link and log in details to the e-referral website and encouraged to visit the My Planned Care website to carry out more research if they require.

Once they have made their decision, the patient should use the link to ERS to make their choice. They can also call the national referral helpline (0345 608 8888).

Alternative choice

Hospitals are now contacting patients who have waited longer than 40 weeks for treatment and do not have an appointment within the next eight weeks to give them the opportunity to consider travelling to a different hospital if one can be found with a shorter waiting time.

Those eligible will be contacted by the hospital they are currently under the care of and will be made aware of the offer and will be given details on how to progress. Template communications have been shared with operational teams to support this.  

If a patient opts to request to move, they submit their details online or over the phone and will also share how far they are willing to travel (50 miles, 100 miles or nationally). The patient will then be clinically validated by their current hospital and, if approved, it is then the role of the ICB to make every effort to identify an appropriate alternative hospital.

If an alternative isn’t found locally and the patient is willing to travel nationally, their details will be uploaded to the digital mutual aid system (DMAS) and other hospitals will be able to offer to treat the patient if appropriate.

If an alternative hospital is identified the patient should be contacted and asked if they would like to proceed. If one isn’t found the patient will be informed and will remain with their current provider and will receive an appointment as soon as one becomes available.

Patients who choose to exercise their choice both at the point of referral and over 40 weeks may be eligible for the Healthcare Travel Costs Scheme and should be made aware of how to make a claim for help. If a patient has questions about help with health costs, they can contact the NHS Business Services Authority online or call 0300 330 1343. As part of alternative choice, ICBs have been asked to ensure that the longest waiting patients who are prepared to travel beyond their local hospitals to receive earlier treatment are not disadvantaged based on their personal circumstances. Each individual will be reviewed on a case-by-case basis.

Reducing missed appointments (Did Not Attend or Was Not Brought)

Patients miss appointments for a range of reasons. These are often outside of their control and could relate to the quality of communications they received.  

As a minimum, all providers should use appointment reminders such as letters, SMS and phone calls and offer patients an accessible option to cancel and rearrange appointments if they need to.

Capturing patients’ preferred means of communication, appointment times and appointment types as well as providing appointment information in a way that suits the patient e.g., available in different languages and in accessible formats will improve both patient experience and outcomes.

If a patient misses an appointment, you should be inquisitive to find out why the patient did not attend and to put measures in place to help patients attend future appointments. Patients who did not attend should not be moved or discharged to a PIFU pathway instead of being assessed appropriately.

When cancellations are made it is important to understand the reasons, and support where possible. More detail is available in the reducing did not attends (DNAs) in outpatient services guidance. Template appointment letters and reminders are also available.

Further guidance and support materials are available on the Outpatient Recovery and Transformation FutureNHS workspace


Validation ensures healthcare providers are prioritising patients based on their individual needs, resulting in accurate waiting lists. The process enables patients to be more involved while they way for care, providing a better patient experience.

Patients on a waiting list should be regularly contacted as per the guidance. This provides patients with a touch point with their healthcare provider where they will be able to discuss changes to their condition, so teams can sure they are on the right pathway to receive the best care and treatment for their needs.

While a patient is waiting, they should be provided with information and support to help them manage their condition. This includes highlighting helpful information and resources available from voluntary, community and social enterprise sector organisations.

As per the guidance, validation can be undertaken using a digital solution such as text messages, an online patient form or an automated chatbot. If a digital solution is not suitable for a patient or they don’t respond, they should be contacted through other communication methods such as a letter or phone call.

During any communication with patients, it is important they are aware of the purpose of the contact and feel empowered to give open, honest updates on their condition. Where a patient’s condition has changed resulting in a possible change to their pathway, a clinical assessment should take place and any changes clearly communicated with the patient. Where this is done through a letter, key information should be included, and a point of contact should be given so the patient can raise questions.

Appendix A: resources

Good communication with patients: core principles – a downloadable version of the communication principles.

Shared decision-making

Help with travel costs

Template letters

Patient support

Reasonable Adjustments

Accessible information standard

Publication reference: PRN00626