LIBRARY

CrossChannel Open Patient Information Library

1. Accessible and multilingual patient-information packs

 

The revised Accessible Information Standard, published in June 2025 and updated in March 2026, requires NHS and publicly funded adult social-care organisations to identify, record, flag, share, meet and review patients’ information and communication needs. Organisations should be able to publish evidence of compliance with the revised standard by March 2027.

National versions of the standard itself are available in Easy Read, audio, British Sign Language and electronic braille. That does not, however, mean that individual clinical leaflets are routinely available in those formats.

Materials that are commonly missing

Patient leaflets simultaneously available as:

  • standard plain English;
  • Easy Read;
  • large print;
  • screen-reader-accessible HTML or tagged PDF;
  • audio;
  • British Sign Language video;
  • translated versions;
  • communication-board or symbol-supported versions.

High-demand clinical subjects include:

  • preparing for surgery;
  • hospital discharge;
  • medication changes;
  • wound and drain care;
  • insulin administration;
  • anticoagulants;
  • inhalers and oxygen;
  • catheter care;
  • cancer treatment;
  • mental-health crisis and discharge planning;
  • maternity and neonatal care;
  • dementia and delirium;
  • learning disability and autism adjustments.

Corresponding nursing guideline

A practical nursing protocol covering:

  1. how to identify communication needs;
  2. how to record and flag them;
  3. how to obtain interpreters and accessible formats;
  4. how to confirm understanding;
  5. how to document reasonable adjustments;
  6. when and how information needs should be reviewed.

2. Procedure-specific discharge and recovery leaflets

 

NICE recommendations frequently require patients to receive information about recovery, self-care, medicines, mobility, diet, complications, work, driving and sources of help. Evidence reviewed for NICE’s perioperative-care guideline found that patients often lacked advice about symptoms, medicines, pain management, opioid reduction, nutrition, physical recovery and what constituted a normal recovery.

HSSIB has also identified continuing safety problems caused by failures in communicating critical information when patients leave hospital, particularly where follow-up is divided between hospital, primary-care, pharmacy and community-nursing teams.

Underprovided leaflets

A separate, patient-facing recovery guide for each procedure, covering:

  • what is normal during each stage of recovery;
  • pain and fatigue expectations;
  • wound, drain, catheter or stoma care;
  • eating, drinking and bowel function;
  • mobility, lifting, exercise and physiotherapy;
  • sleep and emotional effects;
  • medication changes;
  • return to work, driving, flying and sexual activity;
  • who is responsible for follow-up;
  • precise red-flag symptoms and the appropriate contact route.

Particularly valuable subjects would include:

  • thoracic surgery and lung resection;
  • colorectal and abdominal surgery;
  • orthopaedic surgery;
  • gynaecological surgery;
  • urological procedures;
  • cardiac procedures;
  • discharge after intensive care;
  • discharge with a new medical device;
  • discharge following treatment for frailty or falls.

Corresponding nursing guideline

A standardised discharge education and teach-back protocol requiring nurses to:

  • reconcile written and verbal advice;
  • demonstrate device or medicine use;
  • assess whether the patient or carer can perform the task;
  • record that competence has been demonstrated;
  • provide named follow-up contacts;
  • distinguish urgent from routine escalation;
  • document unmet social, cognitive or communication needs.

This gap is especially important because giving a leaflet is not sufficient evidence that the patient can safely manage after discharge.

3. Medication-change and high-risk-medicine discharge packs

A personalised “Your medicines after discharge” leaflet stating:

  • which medicines have started;
  • which have stopped;
  • which doses have changed;
  • why each change was made;
  • when each medicine should be taken;
  • how long treatment should continue;
  • monitoring or blood tests required;
  • important interactions;
  • what to do after a missed dose;
  • warning symptoms;
  • who will issue the next prescription.

Separate modules are particularly needed for:

  • insulin;
  • anticoagulants;
  • steroids;
  • opioids;
  • antiepileptic medicines;
  • Parkinson’s medicines;
  • immunosuppressants;
  • lithium;
  • methotrexate;
  • home intravenous antibiotics;
  • medicines requiring tapering.

Corresponding nursing guidelines

  • Competency assessment for self-administration.
  • Medicines teach-back and demonstration.
  • Time-critical medicines at admission, transfer and discharge.
  • Safe transfer to district nursing or carers.
  • Escalation where a patient cannot obtain, understand or administer medication.
  • Documentation of who assumes responsibility after discharge.

The insulin example is particularly current: HSSIB reported in May 2026 that insulin-related safety incidents remain common and persistent, especially among vulnerable people managing treatment in the community.

4. Patient-specific safety-netting leaflets

 

Safety-netting advice is often buried in generic discharge documentation or communicated verbally. A more useful resource is condition-specific and tells the patient exactly what deterioration looks like and what to do.

High-value subjects

  • suspected cancer while awaiting investigation;
  • postoperative complications;
  • worsening respiratory disease;
  • sepsis and infection after discharge;
  • head injury;
  • chest pain;
  • abdominal pain;
  • pregnancy and postpartum warning signs;
  • neonatal deterioration;
  • medication adverse effects;
  • acute mental-health deterioration;
  • self-harm or suicide risk after discharge;
  • complications of chemotherapy or immunotherapy.

Essential content

Each leaflet should state:

  • what symptoms are expected;
  • what symptoms are not expected;
  • how long symptoms may last;
  • what changes require same-day advice;
  • what requires 999 or emergency-department attendance;
  • whom to contact during and outside normal hours;
  • what to do if the patient cannot obtain a response.

Corresponding nursing guideline

A safety-netting documentation standard specifying that nurses record:

  • the risks discussed;
  • the warning signs explained;
  • the patient’s understanding;
  • the escalation contact supplied;
  • whether language, cognitive or sensory support was used.

Chemotherapy and immunotherapy complications

 

Cancer treatment can produce life-threatening complications that initially resemble relatively minor illnesses. Patients may need to recognise:

  • fever or possible neutropenic sepsis;
  • diarrhoea or colitis;
  • breathlessness or pneumonitis;
  • jaundice or hepatitis;
  • endocrine disturbance;
  • severe skin reactions;
  • neurological or cardiac symptoms;
  • dehydration;
  • line infection;
  • uncontrolled vomiting.

Immunotherapy presents a particularly strong information challenge because immune-related adverse effects can affect almost any organ, may arise after treatment has stopped, and may require urgent specialist assessment. Regulatory materials already require patient-alert information for certain immunotherapies, demonstrating the seriousness of the risk; for example, patients receiving nivolumab with ipilimumab must receive an alert card and information about treatment risks.

The information gap is not necessarily absence of oncology advice. It is inconsistency between:

  • the treatment-unit booklet;
  • manufacturer alert materials;
  • emergency-department advice;
  • telephone-triage instructions;
  • information for carers;
  • post-treatment monitoring.

Recommended pack

When to seek help during and after cancer treatment

The generic pack should then have separate modules for:

  • cytotoxic chemotherapy;
  • immunotherapy;
  • targeted therapy;
  • haematological cancer treatment;
  • central-line complications;
  • oral anticancer medicines.

Essential content

  • treatment name and most recent treatment date;
  • whether immune-related complications can occur after treatment ends;
  • the patient’s personal temperature threshold;
  • symptoms requiring immediate contact with oncology;
  • symptoms requiring 999;
  • instructions not to wait for the next clinic;
  • 24-hour oncology number;
  • what to say to emergency personnel;
  • medicines, such as corticosteroids, that must not be stopped without advice;
  • patient-alert-card instructions.

Corresponding nursing guideline

The nurse should document that:

  • treatment-specific risks were discussed;
  • the patient or carer can distinguish routine adverse effects from urgent symptoms;
  • the 24-hour number has been tested or confirmed;
  • the patient knows to identify themselves as receiving systemic anticancer treatment;
  • alert cards have been supplied;
  • language, cognition, hearing and digital-access needs have been addressed;
  • responsibility after the final treatment cycle is clear.

Commercial potential: exceptionally high, especially for immunotherapy-specific, multilingual and emergency-department versions.

5. Mental-health discharge and crisis-planning packs

 

The Parliamentary and Health Service Ombudsman has reported failures involving patient and family participation, care plans, record-keeping, communication and continuity at discharge from mental-health services. It warned that inadequate community support can contribute to repeated admission and increased suicide risk.

Underprovided patient and carer materials

A personalised discharge pack containing:

  • diagnosis and explanation of recent treatment;
  • current medication and side effects;
  • relapse signatures;
  • a collaborative safety plan;
  • crisis contacts;
  • who will follow up and when;
  • what to do if an appointment is missed;
  • physical-health needs;
  • sleep, substance use and social-support advice;
  • the role of family or carers, subject to consent;
  • housing, benefits and safeguarding contacts;
  • information about rights, advocacy and complaints.

Separate versions are needed for:

  • adults leaving an acute mental-health ward;
  • children and young people;
  • people moving from child to adult services;
  • people discharged after self-harm;
  • people with psychosis or bipolar disorder;
  • people with learning disabilities or autism;
  • carers and relatives.

Corresponding nursing guidelines

  • Collaborative discharge and safety planning.
  • Carer involvement and confidentiality.
  • Physical-health assessment before discharge.
  • Medicines supply and monitoring.
  • Follow-up after missed appointments.
  • Handover between inpatient, crisis and community teams.
  • Escalation for housing, safeguarding or substance-use risks.

6. Physical-health information for people with severe mental illness

 

HSSIB reported continuing gaps in physical healthcare for people with severe mental illness, including inconsistent health checks, inadequate emergency responses and the misattribution of physical symptoms to mental illness.

Missing or weak patient materials

  • “Your annual physical-health check”.
  • Recognising when symptoms may be physical rather than psychiatric.
  • Cardiometabolic effects of antipsychotic medicines.
  • Weight, blood pressure, diabetes and lipid monitoring.
  • Smoking cessation and respiratory health.
  • Sexual and reproductive health.
  • Dental care.
  • When to seek urgent help.
  • How to request a reasonable adjustment during physical-health care.

Corresponding nursing guideline

A protocol for mental-health nurses on:

  • baseline and continuing physical observations;
  • medication monitoring;
  • diagnostic overshadowing;
  • escalation of new physical symptoms;
  • liaison with primary care;
  • documenting missed or declined checks;
  • supporting attendance and reasonable adjustments.

7. Shared-decision-making leaflets and decision aids

 

NICE states that shared decision making should form part of routine healthcare and recommends information resources before, during and after appointments. Patient decision aids should describe options, outcomes, benefits, harms and uncertainties and help patients clarify what matters to them.

NICE produces some patient decision aids, but coverage is far from comprehensive.

Areas suitable for new decision aids

  • surgery versus surveillance;
  • treatment escalation in chronic respiratory disease;
  • cancer-treatment choices;
  • anticoagulation;
  • long-term opioid treatment;
  • antidepressant initiation, continuation or withdrawal;
  • antipsychotic choices;
  • dialysis and conservative kidney care;
  • enteral feeding;
  • place of care at the end of life;
  • preventive treatments where individual preferences matter;
  • treatment choices for frail or multimorbid patients.

Corresponding nursing guideline

A practical nursing guide covering:

  • eliciting patient priorities;
  • explaining options without directing the choice;
  • presenting uncertainty and risk;
  • checking comprehension;
  • recording the decision and unresolved questions;
  • ensuring the patient receives a copy;
  • arranging additional support where capacity or communication is affected.

This is a stronger commercial and clinical opportunity than a conventional disease leaflet because it directly supports measurable implementation of NICE NG197.

Long-term opioid treatment

 

Why the information gap remains substantial

Decisions about continuing, increasing or reducing long-term opioids involve uncertainty and difficult trade-offs between:

  • pain intensity;
  • function and daily activity;
  • adverse effects;
  • tolerance and dependence;
  • withdrawal;
  • sedation and driving;
  • interaction with other sedating medicines;
  • the possibility that higher doses may not improve long-term function.

NICE’s NG215 provides general principles for prescribing and withdrawing medicines associated with dependence, including opioids, but a locally adaptable decision aid could make these trade-offs more usable during consultations.

Recommended pack

Should I continue, change or reduce my long-term opioid medicine?

Options might include:

  • continuing the present treatment with review;
  • changing dose or formulation;
  • gradual reduction;
  • combining reduction with other pain-management support;
  • specialist pain-service assessment.

The aid should not contain a universal taper schedule.

Essential content

  • original reason for starting the opioid;
  • current benefit in terms of function as well as pain;
  • adverse effects and treatment burden;
  • tolerance, dependence and withdrawal;
  • alternatives and supportive treatments;
  • likely effects of continuing or reducing;
  • individual uncertainty;
  • what matters most to the patient;
  • an agreed monitoring or reduction plan;
  • review responsibility and urgent warning signs.

Nursing guideline

Require nurses to:

  • distinguish physical dependence from addiction without stigmatising the patient;
  • elicit the patient’s functional goals;
  • present continuation and reduction options without coercion;
  • check understanding of withdrawal and overdose risks;
  • identify interacting sedatives;
  • record whether the patient agrees, remains uncertain or declines change;
  • escalate disagreement or unsafe prescribing rather than informally directing a taper;
  • ensure the patient receives the written plan and follow-up contact.

Commercial potential: very high across pain services, general practice, orthopaedics and postoperative care.

8. “What happens next?” diagnostic-pathway leaflets

 

Patients frequently receive disease information after diagnosis but much less information while moving through an uncertain diagnostic pathway.

Particularly underserved pathways

  • suspected rare disease;
  • incidental imaging findings;
  • pulmonary nodules and ground-glass opacities;
  • abnormal blood results;
  • suspected cancer referrals;
  • genetic testing;
  • mild cognitive impairment;
  • unexplained neurological symptoms;
  • recurrent pregnancy loss;
  • persistent symptoms without a confirmed diagnosis;
  • post-COVID or other multisystem symptoms.

Content required

  • why the referral or test has been arranged;
  • the possible stages in the pathway;
  • who coordinates care;
  • likely waiting points;
  • how results will be communicated;
  • what to do if no appointment or result arrives;
  • symptom monitoring while waiting;
  • urgent warning signs;
  • emotional and practical support.

Corresponding nursing guideline

A navigation and follow-up protocol covering:

  • tracking outstanding tests and referrals;
  • communicating normal and abnormal results;
  • identifying patients at risk of being lost to follow-up;
  • responding to worsening symptoms during a wait;
  • supporting patients with limited digital access or English proficiency.

Pulmonary nodules and ground-glass opacities

 

Why the gap is particularly strong

Pulmonary nodules are common incidental findings. One NHS cancer alliance states that nodules may be found in up to 35% of people undergoing chest imaging, although most are not concerning.

The pathway can nevertheless involve:

  • risk assessment;
  • repeat computed tomography;
  • multidisciplinary review;
  • positron-emission tomography;
  • biopsy or surgery;
  • surveillance over several years.

A June 2026 NHS leaflet states that solid or subsolid nodules may require follow-up for up to two years and ground-glass nodules for up to four years. Research within University Hospitals Birmingham specifically notes evidence that patients with incidental pulmonary nodules may be lost at several stages of follow-up.

Good local leaflets already exist, so the gap is not complete absence. It is the lack of a consistent patient-held surveillance and follow-up record.

Recommended pack

A pulmonary nodule or ground-glass opacity was found: what happens next?

Supporting documents:

  • personalised nodule-surveillance record;
  • previous and planned scan table;
  • expected result dates;
  • responsible service and contact details;
  • explanation of possible pathway branches;
  • smoking-support information;
  • symptom and red-flag guide;
  • “my follow-up is overdue” action sheet;
  • anxiety and uncertainty support sheet.

Essential content

Every proposed element is needed. Particular emphasis should fall on:

  • why the finding requires surveillance;
  • the distinction between monitoring and confirmed cancer;
  • the possible sequence of repeat scans and further tests;
  • the expected duration of surveillance;
  • who owns the pathway;
  • how each scan result will be communicated;
  • what happens if the nodule is stable, smaller or larger;
  • what the patient should do if a planned scan does not arrive.

Some existing NHS services already explain that results may be communicated by letter or clinic appointment and that further testing is arranged when needed, illustrating the local variation that a template must accommodate.

Nursing/navigation guideline

The protocol should include:

  • registering every surveillance interval;
  • checking that repeat imaging has been ordered;
  • reviewing non-attendance and failed contact;
  • documenting the clinician responsible for each result;
  • communicating reassuring as well as concerning results;
  • escalating interval growth or radiological concern;
  • transferring surveillance safely when the patient moves provider;
  • ensuring patients understand that absence of symptoms does not remove the need for follow-up.

Commercial potential: exceptionally strong for trust-specific adaptation, multilingual versions and integration with lung-nodule services.

9. Carer training and competency leaflets

 

Many NHS pathways assume that relatives will manage medicines, injections, oxygen, feeding tubes, catheters, wounds or behavioural symptoms after discharge. Yet carers may receive only brief verbal instruction.

Needed resources

Patient-and-carer guides for:

  • insulin injections;
  • oxygen and inhalers;
  • enteral feeding;
  • catheter and stoma care;
  • pressure-area care;
  • seizure rescue medicines;
  • end-of-life medicines;
  • dementia-related distress;
  • delirium;
  • falls and mobility;
  • recognition of deterioration.

Corresponding nursing guideline

A carer-training protocol requiring:

  • assessment of willingness and ability;
  • demonstration and supervised practice;
  • written and accessible instructions;
  • competency documentation;
  • equipment and supply checks;
  • contingency plans;
  • respite and emergency contacts;
  • reassessment when the patient’s needs change.
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