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Suspected cancer recognition and referral

About

What is covered

This NICE Pathway covers the recognition and selection for referral or investigation in primary care of people of all ages, including children (aged from birth to 15 years) and young people (aged 16 to 24), who may have cancer. Although the terms 'men' (aged over 16) and 'women' (aged over 16) are used for recommendations on gender-related cancers, these recommendations also extend to people who have changed or are in the process of changing gender, and who retain the relevant organs.
The recommendations aim to help people understand what to expect if they have symptoms that may suggest cancer. They should also help those in secondary care to understand which services should be provided for people with suspected cancer. Finally, these recommendations are recommendations, not requirements, and they are not intended to override clinical judgement.

Updates

Updates to this NICE Pathway

7 December 2021 Brain tumours (primary) and brain metastases in adults (NICE quality standard 203) added.
29 January 2021 Amended recommendation on suspected colorectal cancer to include the full list of criteria for faecal testing.
11 September 2020 Recommendation on when to offer faecal testing for colorectal cancer to adults without rectal bleeding amended in gastrointestinal tract (lower) cancers, and in the tables in abdominal and gastrointestinal symptoms and signs, non-specific features of cancer and blood tests.
25 July 2017 Quantitative faecal immunochemical tests to guide referral for colorectal cancer in primary care (NICE diagnostics guidance 30) added to gastrointestinal tract (lower) cancers.
20 September 2016 Skin cancer (NICE quality standard 130) added.
29 June 2016 Suspected cancer (NICE quality standard 124) added.
22 July 2015 Dyspepsia and gastro‑oesophageal reflux disease in adults (NICE quality standard 96) added.

Person-centred care

People have the right to be involved in discussions and make informed decisions about their care, as described in your care.
Making decisions using NICE guidelines explains how we use words to show the strength (or certainty) of our recommendations, and has information about prescribing medicines (including off label use), professional guidelines, standards and laws (including on consent and mental capacity), and safeguarding.

Your responsibility

Guidelines

The recommendations in this guideline represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, professionals and practitioners are expected to take this guideline fully into account, alongside the individual needs, preferences and values of their patients or the people using their service. It is not mandatory to apply the recommendations, and the guideline does not override the responsibility to make decisions appropriate to the circumstances of the individual, in consultation with them and their families and carers or guardian.
Local commissioners and providers of healthcare have a responsibility to enable the guideline to be applied when individual professionals and people using services wish to use it. They should do so in the context of local and national priorities for funding and developing services, and in light of their duties to have due regard to the need to eliminate unlawful discrimination, to advance equality of opportunity and to reduce health inequalities. Nothing in this guideline should be interpreted in a way that would be inconsistent with complying with those duties.
Commissioners and providers have a responsibility to promote an environmentally sustainable health and care system and should assess and reduce the environmental impact of implementing NICE recommendations wherever possible.

Technology appraisals

The recommendations in this interactive flowchart represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, health professionals are expected to take these recommendations fully into account, alongside the individual needs, preferences and values of their patients. The application of the recommendations in this interactive flowchart is at the discretion of health professionals and their individual patients and do not override the responsibility of healthcare professionals to make decisions appropriate to the circumstances of the individual patient, in consultation with the patient and/or their carer or guardian.
Commissioners and/or providers have a responsibility to provide the funding required to enable the recommendations to be applied when individual health professionals and their patients wish to use it, in accordance with the NHS Constitution. They should do so in light of their duties to have due regard to the need to eliminate unlawful discrimination, to advance equality of opportunity and to reduce health inequalities.
Commissioners and providers have a responsibility to promote an environmentally sustainable health and care system and should assess and reduce the environmental impact of implementing NICE recommendations wherever possible.

Medical technologies guidance, diagnostics guidance and interventional procedures guidance

The recommendations in this interactive flowchart represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, healthcare professionals are expected to take these recommendations fully into account. However, the interactive flowchart does not override the individual responsibility of healthcare professionals to make decisions appropriate to the circumstances of the individual patient, in consultation with the patient and/or guardian or carer.
Commissioners and/or providers have a responsibility to implement the recommendations, in their local context, in light of their duties to have due regard to the need to eliminate unlawful discrimination, advance equality of opportunity, and foster good relations. Nothing in this interactive flowchart should be interpreted in a way that would be inconsistent with compliance with those duties.
Commissioners and providers have a responsibility to promote an environmentally sustainable health and care system and should assess and reduce the environmental impact of implementing NICE recommendations wherever possible.

Short Text

Everything NICE has said on suspected cancer, recognition and selection for referral or investigation in primary care in an interactive flowchart

What is covered

This NICE Pathway covers the recognition and selection for referral or investigation in primary care of people of all ages, including children (aged from birth to 15 years) and young people (aged 16 to 24), who may have cancer. Although the terms 'men' (aged over 16) and 'women' (aged over 16) are used for recommendations on gender-related cancers, these recommendations also extend to people who have changed or are in the process of changing gender, and who retain the relevant organs.
The recommendations aim to help people understand what to expect if they have symptoms that may suggest cancer. They should also help those in secondary care to understand which services should be provided for people with suspected cancer. Finally, these recommendations are recommendations, not requirements, and they are not intended to override clinical judgement.

Updates

Updates to this NICE Pathway

7 December 2021 Brain tumours (primary) and brain metastases in adults (NICE quality standard 203) added.
29 January 2021 Amended recommendation on suspected colorectal cancer to include the full list of criteria for faecal testing.
11 September 2020 Recommendation on when to offer faecal testing for colorectal cancer to adults without rectal bleeding amended in gastrointestinal tract (lower) cancers, and in the tables in abdominal and gastrointestinal symptoms and signs, non-specific features of cancer and blood tests.
25 July 2017 Quantitative faecal immunochemical tests to guide referral for colorectal cancer in primary care (NICE diagnostics guidance 30) added to gastrointestinal tract (lower) cancers.
20 September 2016 Skin cancer (NICE quality standard 130) added.
29 June 2016 Suspected cancer (NICE quality standard 124) added.
22 July 2015 Dyspepsia and gastro‑oesophageal reflux disease in adults (NICE quality standard 96) added.

Sources

NICE guidance and other sources used to create this interactive flowchart.
Suspected cancer: recognition and referral (2015, updated 2020) NICE guideline NG12
Skin cancer (2016) NICE quality standard 130
Suspected cancer (2016 updated 2017) NICE quality standard 124
Cytosponge for detecting abnormal cells in the oesophagus (2020) NICE medtech innovation briefing 240

Quality standards

Dyspepsia and gastro-oesophageal reflux disease in adults

These quality statements are taken from the dyspepsia and gastro-oesophageal reflux disease in adults quality standard. The quality standard defines clinical best practice for dyspepsia and gastro-oesophageal reflux disease in adults and should be read in full.

Suspected cancer

These quality statements are taken from the suspected cancer quality standard. The quality standard defines clinical best practice for suspected cancer and should be read in full.

Brain tumours (primary) and brain metastases in adults

These quality statements are taken from the brain tumours (primary) and brain metastases in adults quality standard. The quality standard defines clinical best practice for brain tumours (primary) and brain metastases in adults and should be read in full.

Quality statements

Advice to support self-management

This quality statement is taken from the dyspepsia and gastro-oesophageal reflux disease in adults quality standard. The quality standard defines clinical best practice for dyspepsia and gastro-oesophageal reflux disease in adults and should be read in full.

Quality statement

Adults with dyspepsia or reflux symptoms who present to community pharmacists are given advice about making lifestyle changes, using over-the-counter medicines and when to consult their GP.

Rationale

Adults with dyspepsia or reflux symptoms who present to their community pharmacist may be able to alleviate and manage their symptoms by making changes to their lifestyle (eating healthily, losing weight if they are overweight, not smoking) and using over-the-counter medicines. It is also important that adults receive advice about when they should consult their GP to ensure that symptoms are investigated and managed appropriately.

Quality measures

Structure
Evidence of local arrangements to ensure that adults with dyspepsia or reflux symptoms who present to their community pharmacist are given advice about making lifestyle changes, using over-the-counter medicines and when to consult their GP.
Data source: Local data collection.
Process
Proportion of presentations of adults with dyspepsia or reflux symptoms to community pharmacists in which advice is received about making lifestyle changes, using over-the-counter medicines and when to consult a GP.
Numerator – the number in the denominator in which advice is received about making lifestyle changes, using over-the-counter medicines and when to consult a GP.
Denominator – the number of presentations of adults with dyspepsia or reflux symptoms to community pharmacists.
Data source: Local data collection.
Outcome
Adults with dyspepsia or reflux symptoms are satisfied that they are able to self-manage their condition.
Data source: Local data collection.
Patient-reported health outcomes for adults with dyspepsia or gastro-oesophageal reflux disease.
Data source: Local data collection.

What the quality statement means for service providers, healthcare professionals and commissioners

Service providers (community pharmacists) ensure that processes are in place so that adults presenting with dyspepsia or reflux symptoms receive advice about making lifestyle changes, using over-the-counter medicines and when to consult their GP. This may include providing information leaflets when over-the-counter medicines are purchased.
Community pharmacists advise adults presenting with dyspepsia or reflux symptoms about making lifestyle changes, using over-the-counter medicines and when to consult their GP.
Commissioners (NHS England area teams and clinical commissioning groups) commission services that ensure community pharmacists advise people presenting with dyspepsia or reflux symptoms about making lifestyle changes, using over-the-counter medicines and when to consult their GP. Commissioners should work collaboratively with available minor ailment schemes to ensure that advice to adults with dyspepsia or reflux symptoms is included in any relevant service specifications.

What the quality statement means for patients, service users and carers

Adults with indigestion or heartburn receive advice from their pharmacist about what they can do to relieve their symptoms. This should include advice about eating healthily, losing weight if they are overweight and not smoking. They should also receive information about medicines that can be bought ‘over-the-counter’ without a prescription and when people should make an appointment to see their GP. This information will help adults with indigestion or heartburn to manage their condition themselves.

Source guidance

Definitions of terms used in this quality statement

Advice about lifestyle changes
Adults presenting with dyspepsia or reflux symptoms should be given simple lifestyle advice including:
  • Healthy eating, weight loss for people who are overweight and smoking cessation for people who smoke.
  • Avoiding known causes that may be associated with symptoms, including smoking, alcohol, coffee, chocolate, fatty foods and being overweight.
  • Other factors that might help, such as raising the head of the bed and having a main meal at least 3 hours before going to bed.
[Dyspepsia and gastro-oesophageal reflux disease (NICE guideline CG184) recommendations 1.2.1, 1.2.2 and information for the public]
Advice about using over-the-counter medication
Adults presenting with dyspepsia or reflux symptoms should be advised to avoid long-term, frequent dose, continuous antacid therapy, because it only relieves symptoms in the short-term rather than preventing them. Adults with these symptoms should also be advised that non-steroidal anti-inflammatory drugs (NSAIDs) can be a potential cause.
[Adapted from Dyspepsia and gastro-oesophageal reflux disease (NICE guideline CG184) recommendations 1.3.2 and 1.8.7]
Advice about when to consult their GP
Adults presenting with dyspepsia or reflux symptoms should be advised to see their GP if their symptoms have persisted for several weeks, get worse over time, or do not improve with medication. They should be advised to see their GP urgently if they have dysphagia or if they are aged 55 and over with additional symptoms that may be a cause for concern including weight loss, haematemesis, nausea or vomiting, or upper abdominal pain.
[Adapted from Dyspepsia and gastro-oesophageal reflux disease (NICE full guideline CG184) section 4.1.2.1, Suspected cancer (NICE guideline NG12) recommendations 1.2.1, 1.2.2, 1.2.3, 1.2.7, 1.2.8, 1.2.9, and expert opinion]

Equality and diversity considerations

Healthcare professionals should offer prescriptions to socially disadvantaged adults for over-the-counter medicines for dyspepsia or reflux symptoms if needed.
Community pharmacists should take into account cultural and communication needs when providing advice and educational materials.
Not all adults will want to self-manage their dyspepsia or reflux symptoms, or be able to do so, and community pharmacists should identify any vulnerable people who may need additional support.

Urgent endoscopy

This quality statement is taken from the dyspepsia and gastro-oesophageal reflux disease in adults quality standard. The quality standard defines clinical best practice for dyspepsia and gastro-oesophageal reflux disease in adults and should be read in full.

Quality statement

Adults presenting with dyspepsia or reflux symptoms are referred for urgent direct access endoscopy to take place within 2 weeks if they have dysphagia, or are aged 55 and over with weight loss.

Rationale

There is currently wide geographical variation in referral rates for endoscopy for adults with dyspepsia or reflux symptoms. Although many adults presenting with dyspepsia or reflux symptoms will not need an endoscopy, it is important that those with additional symptoms that indicate a higher risk of oesophagogastric cancer are referred urgently for investigation. Direct access endoscopy will ensure that referrals from primary care to the suspected cancer pathway are focused on people with symptoms of suspected cancer.

Quality measures

Structure
Evidence of local arrangements to ensure that adults presenting with dyspepsia or reflux symptoms are referred for urgent direct access endoscopy to take place within 2 weeks if they have dysphagia, or are aged 55 and over with weight loss.
Data source: Local data collection.
Process
a) Proportion of adults presenting with dyspepsia or reflux symptoms and dysphagia who are referred for urgent direct access endoscopy.
Numerator – the number in the denominator who are referred for urgent direct access endoscopy.
Denominator – the number of adults presenting with dyspepsia or reflux symptoms and dysphagia.
Data source: Local data collection. Hospital Episode Statistics collects data on upper gastrointestinal endoscopies.
b) Proportion of referrals for adults presenting with dyspepsia or reflux symptoms and dysphagia who receive urgent direct access endoscopy within 2 weeks.
Numerator – the number in the denominator who receive endoscopy within 2 weeks.
Denominator – the number of referrals for urgent direct access endoscopy for adults presenting with dyspepsia or reflux symptoms and dysphagia.
Data source: Local data collection. Hospital Episode Statistics collects data on upper gastrointestinal endoscopies.
c) Proportion of adults aged 55 and over presenting with dyspepsia or reflux symptoms and weight loss who are referred for urgent direct access endoscopy.
Numerator – the number in the denominator who are referred for urgent direct access endoscopy.
Denominator – the number of adults aged 55 and over presenting with dyspepsia or reflux symptoms and weight loss.
Data source: Local data collection. Hospital Episode Statistics collects data on upper gastrointestinal endoscopies.
d) Proportion of referrals for adults aged 55 and over presenting with dyspepsia or reflux symptoms and weight loss who receive urgent direct access endoscopy within 2 weeks.
Numerator – the number in the denominator who receive endoscopy within 2 weeks.
Denominator – the number of referrals for urgent direct access endoscopy for adults aged 55 and over presenting with dyspepsia or reflux symptoms and weight loss.
Data source: Local data collection. Hospital Episode Statistics collects data on upper gastrointestinal endoscopies.
Outcome
a) Incidence of oesophagogastric cancer.
Data source: Local data collection. Cancer Registration Statistics collects data on the incidence of cancer.
b) Oesophagogastric cancer survival rates.
Data source: Local data collection. Geographic patterns of cancer survival in England provide data on 1- and 5-year survival rates.
c) Patient satisfaction with investigation of dyspepsia and reflux symptoms.
Data source: Local data collection.

What the quality statement means for service providers, healthcare professionals and commissioners

Service providers (general practices and community healthcare providers) ensure that processes and resources are in place so that adults presenting with dyspepsia or reflux symptoms are referred for urgent direct access endoscopy to take place within 2 weeks if they have dysphagia or are aged 55 and over with weight loss. Endoscopy services should record and report inappropriate urgent direct access referrals for adults with dyspepsia or reflux symptoms.
Healthcare professionals refer adults presenting with dyspepsia or reflux symptoms for urgent direct access endoscopy to take place within 2 weeks if they have dysphagia or are aged 55 and over with weight loss.
Commissioners (clinical commissioning groups and NHS England area teams) ensure that they commission services that refer adults presenting with dyspepsia or reflux symptoms for urgent direct access endoscopy to take place within 2 weeks if they have dysphagia or are aged 55 and over with weight loss. Commissioners should monitor inappropriate urgent direct access referrals for endoscopy for adults with dyspepsia or reflux symptoms as well as investigate particularly low rates of referral.

What the quality statement means for patients, service users and carers

Adults with indigestion or heartburn will be referred for an endoscopy if they have additional symptoms that need to be investigated, such as pain or difficulty swallowing or weight loss when they are over 55. An endoscopy is a procedure that is sometimes carried out to investigate indigestion symptoms and find out what is causing them. It involves using an endoscope (a narrow, flexible tube with a camera at its tip), to see inside the oesophagus and stomach. The person may be offered sedation before the procedure or given a local anaesthetic to numb the throat. The endoscope is then guided down the person's throat and into their stomach. Not everyone with indigestion or heartburn will need an endoscopy.

Source guidance

Definitions of terms used in this quality statement

Urgent direct access endoscopy
Primary care arranges for an endoscopy to be carried out within 2 weeks and retains clinical responsibility throughout, including acting on the result.
[Suspected cancer (NICE guideline NG12)]

Equality and diversity considerations

Healthcare professionals should take into account cultural and communication needs when arranging and explaining a referral for direct access endoscopy.
Healthcare professionals should respect an adult’s choice to refuse an endoscopy if they consider themselves to be too frail due to age.

Testing conditions for Helicobacter pylori

This quality statement is taken from the dyspepsia and gastro-oesophageal reflux disease in adults quality standard. The quality standard defines clinical best practice for dyspepsia and gastro-oesophageal reflux disease in adults and should be read in full.

Quality statement

Adults with dyspepsia or reflux symptoms have a 2-week washout period before a test for Helicobacter pylori if they are receiving proton pump inhibitor therapy.

Rationale

To improve the accuracy of Helicobacter pylori (H pylori) testing it is important to have a 2-week washout period after using a proton pump inhibitor (PPI). Improving the accuracy of the test will ensure that treatment for H pylori infection is given only if needed. Treatment for H pylori infection is complex and there is concern that treatment without an accurate diagnosis may lead to increasing antimicrobial resistance. In addition, treatment for H pylori can be unpleasant for the patient and has an increased risk of antibiotic-associated diarrhoea and enteric infections such as Clostridium difficile.

Quality measures

Structure
Evidence of local arrangements to ensure that adults with dyspepsia or reflux symptoms have a 2-week washout period before a test for H pylori if they are receiving PPI therapy.
Data source: Local data collection.
Process
Proportion of adults with dyspepsia or reflux symptoms receiving PPI therapy who are tested for H pylori who had a 2-week washout period before the test.
Numerator – the number in the denominator who had a 2-week washout period before the test.
Denominator – the number of adults with dyspepsia or reflux symptoms receiving PPI therapy who are tested for H pylori.
Data source: Local data collection.
Outcome
H pylori antimicrobial resistance rate.
Data source: Local data collection.

What the quality statement means for service providers, healthcare professionals and commissioners

Service providers (general practices and hospitals) ensure that adults with dyspepsia or reflux symptoms have a 2-week washout period before a test for H pylori if they are receiving PPI therapy.
Healthcare professionals ensure that adults with dyspepsia or reflux symptoms have a 2-week washout period before testing for H pylori if they are receiving PPI therapy.
Commissioners (clinical commissioning groups and NHS England area teams) commission services that ensure that adults with dyspepsia or reflux symptoms have a 2-week washout period before a test for H pylori if they are receiving PPI therapy.

What the quality statement means for patients, service users and carers

Adults with indigestion or heartburn may need to have a test for an infection called Helicobacter pylori (H pylori for short), which can cause stomach and duodenal ulcers (the duodenum is the section of intestine immediately after the stomach). H pylori infection is detected using a breath or stool test, or sometimes a blood test. If the person is taking a medicine called a proton pump inhibitor (PPI) for their indigestion or heartburn symptoms, their GP will tell them if they need to stop taking the PPI or any other medicine before the H pylori test.

Source guidance

Definitions of terms used in this quality statement

Proton pump inhibitor (PPI)
Proton pump inhibitors inhibit gastric acid secretion by blocking the hydrogen-potassium adenosine triphosphatase enzyme system (the ‘proton pump’) of the gastric parietal cell. PPIs include esomeprazole, lansoprazole, omeprazole, pantoprazole, and rabeprazole.
Test for H pylori
Use a carbon-13 urea breath test, a stool antigen test or laboratory-based serology where its performance has been locally validated to test for H pylori. Ensure that no antibiotics have been taken for any infection in the 4 weeks before the test.
If laboratory-based serology is to be used, its performance should be locally validated to test for H pylori. The serology test should have high positive predictive value in the intended population, or positives should be confirmed with a second test. Validation is an evidence-based assessment of how a test performs in the laboratory, and demonstrates suitability for intended purpose. Local validation will provide documentary evidence that a commercial serology kit is performing within the manufacturer’s specifications. This will include results of experiments to determine its accuracy, sensitivity, reliability and reproducibility. Local validation should meet the requirements set out in the UK Standards for Microbiology Investigations.
[Adapted from Dyspepsia and gastro-oesophageal reflux disease (2014) NICE guideline CG184 recommendations 1.4.2 and 1.9.1, UK Standards for Microbiology Investigations – SMI Q1: Commercial and in-house diagnostic tests: evaluations and validations (2014) Public Health England Quality Guidance, and expert opinion]

Equality and diversity considerations

Serological tests are less reliable in older people and therefore, where laboratory-based serology tests are used, their suitability for people over 65 should be carefully considered.
It is important to use an accurate test for H pylori for people from ethnic minority groups because resistance rates are higher than in the general population. Where laboratory-based serology tests are used, their suitability for people from ethnic minority groups should be carefully considered.

Discussion about referral for non-urgent endoscopy

This quality statement is taken from the dyspepsia and gastro-oesophageal reflux disease in adults quality standard. The quality standard defines clinical best practice for dyspepsia and gastro-oesophageal reflux disease in adults and should be read in full.

Quality statement

Adults aged 55 and over with dyspepsia or reflux symptoms that have not responded to treatment have a discussion with their GP about referral for non-urgent direct access endoscopy.

Rationale

There is currently wide geographical variation in referral rates for endoscopy for adults with dyspepsia or reflux symptoms. Although many adults with dyspepsia or reflux symptoms will not need an endoscopy, it is important that those with an increased risk of oesophagogastric cancer have a discussion with their GP about referral for endoscopy to investigate the cause.

Quality measures

Structure
Evidence of local arrangements to ensure that adults aged 55 and over with dyspepsia or reflux symptoms that have not responded to treatment have a discussion with their GP about referral for non-urgent direct access endoscopy.
Data source: Local data collection.
Process
Proportion of adults aged 55 and over with dyspepsia or reflux symptoms that have not responded to treatment who have a recorded discussion with their GP about referral for non-urgent direct access endoscopy.
Numerator – the number in the denominator who have a recorded discussion with their GP about referral for non-urgent direct access endoscopy.
Denominator – the number of adults aged 55 and over with dyspepsia or reflux symptoms that have not responded to treatment.
Data source: Local data collection.
Outcome
a) Incidence of oesophagogastric cancer.
Data source: Local data collection. Cancer Registration Statistics collect data on the incidence of cancer.
b) Oesophagogastric cancer survival rate.
Data source: Local data collection. Geographic patterns of cancer survival in England provide data on 1- and 5-year survival rates.
c) Patient satisfaction with investigation of dyspepsia and reflux symptoms.
Data source: Local data collection.

What the quality statement means for service providers, healthcare professionals and commissioners

Service providers (general practices) ensure that processes are in place so that adults aged 55 and over with dyspepsia or reflux symptoms that have not responded to treatment have a discussion with their GP about referral for non-urgent direct access endoscopy.
Healthcare professionals (GPs) discuss referral for non-urgent direct access endoscopy with adults aged 55 and over with dyspepsia or reflux symptoms that have not responded to treatment.
Commissioners (NHS England area teams) commission services that ensure adults aged 55 and over with dyspepsia or reflux symptoms that have not responded to treatment have a discussion with their GP about referral for non-urgent direct access endoscopy.

What the quality statement means for patients, service users and carers

Adults with indigestion or heartburn whose symptoms do not respond to treatment should have a discussion with their GP about referral for an endoscopy. An endoscopy is a procedure that is sometimes carried out to investigate indigestion symptoms and find out what is causing them. It involves using an endoscope (a narrow, flexible tube with a camera at its tip), to see inside the oesophagus and stomach. The person may be offered sedation before the procedure or given a local anaesthetic to numb the throat. The endoscope is then guided down the person's throat and into their stomach. Not everyone with indigestion or heartburn will need an endoscopy.

Source guidance

Definitions of terms used in this quality statement

Not responded to treatment
Adults with uninvestigated dyspepsia or reflux symptoms should try a full dose proton pump inhibitor (PPI) for a month and, if there is an inadequate response, H2 receptor antagonist (H2RA) therapy for a month, in order to manage their symptoms. If there is no improvement in symptoms after 8 weeks of treatment and testing for Helicobacter pylori is negative, it should be concluded that the condition has not responded to treatment.
[Adapted from Dyspepsia and gastro-oesophageal reflux disease (NICE guideline CG184) recommendations 1.4.3, 1.4.4 and 1.4.6]
Discussion about referral for endoscopy
Endoscopy should not routinely be offered to diagnose Barrett’s oesophagus. If endoscopy is considered, the discussion should focus on the person’s preferences and their individual risk factors (long duration of symptoms, increased frequency of symptoms, previous oesophagitis, previous hiatus hernia, oesophageal stricture or oesophageal ulcers, or male gender)BOB CAT: a large-scale review and Delphi consensus for management of Barrett’s Esophagus with no dysplasia, indefinite for, or low-grade dysplasia. Bennett et al, The American Journal of Gastronenterology 2015 . If people have had a previous endoscopy and there is no change in symptoms, discuss continuing management according to previous endoscopic findings.
[Dyspepsia and gastro-oesophageal reflux disease (NICE guideline CG184) recommendations 1.3.4 and 1.6.11]
Non-urgent direct access endoscopy
Primary care arranges for a non-urgent endoscopy to be carried out and retains clinical responsibility throughout, including acting on the result.
[Suspected cancer (NICE guideline NG12)]

Equality and diversity considerations

Healthcare professionals should take into account cultural and communication needs when discussing a referral for non-urgent direct access endoscopy.
Healthcare professionals should respect a person’s choice to refuse an endoscopy if they consider themselves to be too frail due to age.

Referral to a specialist service

This quality statement is taken from the dyspepsia and gastro-oesophageal reflux disease in adults quality standard. The quality standard defines clinical best practice for dyspepsia and gastro-oesophageal reflux disease in adults and should be read in full.

Quality statement

Adults with persistent, unexplained dyspepsia or reflux symptoms have a discussion with their GP about referral to a specialist service.

Rationale

Long-term symptoms can negatively affect an adult’s quality of life, so they should have a discussion with their healthcare professional about possible referral to a specialist service based on their individual risk factors and preferences. A referral to a specialist service will enable treatment and potential causes to be reviewed in order to reduce symptom burden. It could also reduce the risk of further complications developing, such as scarring of the oesophagus and pylorus, oesophageal stricture, pyloric stenosis and Barrett’s oesophagus, which is a risk factor for cancer.

Quality measures

Structure
Evidence of local arrangements to ensure that adults with persistent, unexplained dyspepsia or reflux symptoms have a discussion with their GP about referral to a specialist service.
Data source: Local data collection.
Process
Proportion of adults presenting with persistent, unexplained dyspepsia or reflux symptoms with a recorded discussion with their GP about referral to a specialist service.
Numerator – the number in the denominator with a recorded discussion with their GP about referral to a specialist service.
Denominator – the number of adults presenting with persistent, unexplained dyspepsia or reflux symptoms.
Data source: Local data collection.
Outcome
a) Incidence of Barrett’s oesophagus.
Data source: Local data collection.
b) Incidence of oesophageal stricture.
Data source: Local data collection.
c) Incidence of pyloric stenosis in adults.
Data source: Local data collection.
d) Patient-reported health outcomes for people with dyspepsia or reflux symptoms.
Data source: Local data collection.

What the quality statement means for service providers, healthcare professionals and commissioners

Service providers (general practices) ensure that processes are in place so that adults with persistent, unexplained dyspepsia or reflux symptoms discuss referral to a specialist service.
Healthcare professionals (GPs) discuss referral to a specialist service with adults with persistent, unexplained dyspepsia or reflux symptoms.
Commissioners (NHS England area teams) ensure that they commission services that ensure that GPs discuss referral to a specialist service with adults with persistent, unexplained dyspepsia or reflux symptoms. Commissioners should also ensure that a suitable specialist service is available.

What the quality statement means for patients, service users and carers

Adults with unexplained indigestion or heartburn that does not go away should talk to their GP about the possibility of being referred to see a specialist.

Source guidance

Definitions of terms used in this quality statement

Persistent unexplained dyspepsia or reflux symptoms
Symptoms that have not led to a diagnosis being made by the healthcare professional in primary care after initial assessment (including history, examination and any appropriate primary care investigations such as endoscopy or Helicobacter pylori test). Symptoms have continued beyond a period that would normally be associated with self-limiting problems.
[Suspected cancer (NICE guideline NG12) and expert opinion]
Discussion about referral to a specialist service
The discussion should focus on the person’s preferences and their individual risk factors (long duration of symptoms, increased frequency of symptoms, previous oesophagitis, previous hiatus hernia, oesophageal stricture or oesophageal ulcers, or male gender). If people have had a previous endoscopy and there is no change in symptoms, discuss continuing management according to previous endoscopic findings.
[Dyspepsia and gastro-oesophageal reflux disease (NICE guideline CG184) recommendations 1.3.4 and 1.6.11]
Specialist service
A consultant-led medical or surgical service. [Adapted from Dyspepsia and gastro-oesophageal reflux disease (NICE full guideline CG184) review question 4.9.1]

Equality and diversity considerations

Healthcare professionals should take into account cultural and communication needs when discussing referral to a specialist service.

Direct access to diagnostic tests

This quality statement is taken from the suspected cancer quality standard. The quality standard defines clinical best practice in suspected cancer and should be read in full.

Quality statement

GPs have direct access to diagnostic endoscopy, ultrasound, MRI, X-ray and CT for people with suspected cancer.

Rationale

People who visit their GP with symptoms that may suggest cancer are sent for diagnostic tests to confirm or refute a cancer diagnosis. Enabling GPs to use direct access for specific tests is cost effective and will reduce the time to reach a diagnosis.

Quality measures

The following measures can be used to assess the quality of care or service provision specified in the statement. They are examples of how the statement can be measured and can be adapted and used flexibly.
Structure
Evidence of local arrangements to give GPs direct access to diagnostic endoscopy, ultrasound, MRI, X-ray and CT for people with suspected cancer.
Data source: Local data collection.
Outcome
a) Time to diagnostic test for suspected cancer.
Data source: Local data collection.
b) Time from presentation at GP to cancer diagnosis.
Data source: Local data collection.

What the quality statement means for different audiences

Service providers (primary care, secondary care and community imaging services) ensure that systems are in place for GPs to send people with suspected cancer directly for diagnostic endoscopy, ultrasound, MRI, X-ray or CT.
Healthcare professionals (GPs or practice nurses) send people with suspected cancer, when appropriate, directly for diagnostic tests such as endoscopy, ultrasound, MRI, X-ray or CT.
Commissioners (clinical commissioning groups and NHS England) ensure services use direct access pathways to send people with suspected cancer directly to diagnostic endoscopy, ultrasound, MRI, X-ray or CT.
People with symptoms that may suggest cancer sometimes need a test, such as an X-ray or scan. These tests will find out whether or not the person’s symptoms are caused by cancer. People who are sent for these tests directly by their GP will find out whether or not they have cancer faster than if they were referred using a cancer pathway.

Source guidance

Suspected cancer: recognition and referral. NICE guideline NG12 (2015, updated 2021), recommendations 1.2.1 and 1.2.7

Definitions of terms used in this quality statement

Direct access
When a person is referred directly by their GP for a test in a specialist service and the GP retains responsibility for the person’s care, including following up and acting on the results. [Adapted from NICE’s guideline on suspected cancer]

Urgent direct access endoscopy for oesophageal or stomach cancer

This quality statement is taken from the suspected cancer quality standard. The quality standard defines clinical best practice in suspected cancer and should be read in full.

Quality statement

People presenting in primary care with symptoms that suggest oesophageal or stomach cancer have an urgent direct access upper gastrointestinal endoscopy.

Rationale

Urgent direct access for upper gastrointestinal endoscopy is cost effective and can lead to faster diagnosis of oesophageal or stomach cancer. Early detection and diagnosis is important to successfully treat and survive cancer, and to improve the quality of life for people with oesophageal or stomach cancer.

Quality measures

The following measures can be used to assess the quality of care or service provision specified in the statement. They are examples of how the statement can be measured and can be adapted and used flexibly.
Structure
Evidence of local direct access pathways to ensure that people presenting in primary care with symptoms that suggest oesophageal or stomach cancer have an urgent direct access upper gastrointestinal endoscopy.
Data source: Local data collection.
Process
Proportion of people with symptoms that suggest oesophageal or stomach cancer who have an urgent direct access upper gastrointestinal endoscopy.
Numerator – the number in the denominator who have an urgent direct access upper gastrointestinal endoscopy.
Denominator – the number of people with symptoms that suggest oesophageal or stomach cancer sent for an urgent direct access upper gastrointestinal endoscopy at the time of presentation at their GP.
Data source: Local data collection.
Outcome
a) Time to oesophageal cancer diagnosis.
Data source: Local data collection.
b) Time to stomach cancer diagnosis.
Data source: Local data collection.

What the quality statement means for different audiences

Service providers (primary care services and endoscopy services) ensure that systems are in place for GPs to send people who present at primary care with symptoms that suggest oesophageal or stomach cancer for an urgent direct access upper gastrointestinal endoscopy.
Healthcare professionals (GPs or practice nurses) send people with symptoms that suggest oesophageal or stomach cancer for an urgent direct access upper gastrointestinal endoscopy.
Commissioners (clinical commissioning groups and NHS England) ensure services use urgent direct access to send people who present in primary care with symptoms that suggest oesophageal or stomach cancer for an urgent direct access upper gastrointestinal endoscopy.
People who have certain symptoms that might be caused by cancer of the oesophagus (the throat) or stomach and who go to their GP are offered a hospital procedure to look inside the throat and stomach (called an endoscopy). This is carried out and the results sent back within 2 weeks of seeing their GP.

Source guidance

Suspected cancer: recognition and referral. NICE guideline NG12 (2015, updated 2021), recommendations 1.2.1 and 1.2.7

Definitions of terms used in this quality statement

Direct access
When a person is sent directly by their GP for a test in a specialist service, such as imaging or endoscopy, and the GP retains responsibility for the person’s care, including following up and acting on the results. [Adapted from NICE’s guideline on suspected cancer]
Urgent
The test should be performed and results returned within 2 weeks. When a person is sent for an urgent direct access test by their GP, the test (for example, an endoscopy) is performed and results returned within 2 weeks. [Adapted from NICE’s guideline on suspected cancer]
Symptoms that suggest oesophageal or stomach cancer
People should be referred for an urgent direct access upper gastrointestinal endoscopy (performed within 2 weeks) to assess for oesophageal or stomach cancer if they:
  • have dysphagia or
  • are aged 55 and over with weight loss and any of the following:
    • upper abdominal pain
    • reflux
    • dyspepsia.
[Adapted from NICE’s guideline on suspected cancer, recommendations 1.2.1 and 1.2.7]

Testing for blood in faeces

This quality statement is taken from the suspected cancer quality standard. The quality standard defines clinical best practice in suspected cancer and should be read in full.

Quality statement

Adults presenting in primary care with symptoms that suggest colorectal cancer, who do not meet the referral pathway criteria, have a test for blood in their faeces.

Rationale

Many colorectal cancers leak blood into the bowel intermittently. Tests for the presence of blood in faeces are relatively easy, inexpensive and safe, and help to identify people at higher risk of having colorectal cancer. People at higher risk can then receive definitive investigation sooner, resulting in earlier treatment for those diagnosed with cancer.

Quality measures

The following measures can be used to assess the quality of care or service provision specified in the statement. They are examples of how the statement can be measured and can be adapted and used flexibly.
Structure
Evidence of local arrangements and written clinical protocols to ensure that adults presenting in primary care with symptoms that suggest colorectal cancer who do not meet the referral pathway criteria, have a test for blood in faeces.
Data source: Local data collection.
Process
Proportion of presentations of adults with symptoms that suggest colorectal cancer, without visible rectal bleeding, in which the person has a test for blood in faeces.
Numerator – the number in the denominator resulting in a test for blood in faeces.
Denominator – the number of presentations of adults with symptoms that suggest colorectal cancer who do not meet the referral pathway criteria.
Data source: Local data collection.
Outcome
a) Stage of colorectal cancer at diagnosis.
Data source: Local data collection.
b) Colorectal cancer-related mortality.
Data source: Local data collection.

What the quality statement means for different audiences

Service providers (primary care services) ensure that systems are in place for adults with symptoms that suggest colorectal cancer, who do not meet the referral pathway criteria, to have a test for blood in their faeces.
Healthcare professionals (GPs, specialists and practice nurses) ensure they offer a test for blood in their faeces to adults presenting in primary care with symptoms that suggest colorectal cancer who do not meet the referral pathway criteria.
Commissioners (clinical commissioning groups and NHS England) ensure that they commission services in which people presenting in primary care with symptoms that suggest colorectal cancer, who do not meet the referral pathway criteria, have a test for blood in their faeces.
Adults who have certain symptoms that might be caused by cancer of the colon or rectum, should be offered a test to check for traces of blood in their faeces. This will check if the person is at risk of cancer, and may help to diagnose it early.

Source guidance

Definitions of terms used in this quality statement

Adults with symptoms that suggest colorectal cancer who do not need an urgent referral
Adults with unexplained symptoms of colorectal cancer (for example, weight loss, abdominal pain, iron-deficiency anaemia and changes in bowel habit) who do not have rectal bleeding and do not meet the criteria for a suspected cancer pathway referral outlined in NICE's guideline on suspected cancer (recommendations 1.3.1 to 1.3.3). [Adapted from NICE diagnostics guidance on quantitative faecal immunochemical tests to guide referral for colorectal cancer in primary care and NICE's guideline on suspected cancer: recognition and referral, recommendations 1.3.4]
Test for blood in faeces
A chemical test that can pick up the presence of tiny traces of blood in faeces. NICE recommends OC Sensor, HM‑JACKarc and FOB Gold quantitative faecal immunochemical tests for adoption in primary care [NICE diagnostics guidance on quantitative faecal immunochemical tests to guide referral for colorectal cancer in primary care]

Encouraging attendance at cancer services

This quality statement is taken from the suspected cancer quality standard. The quality standard defines clinical best practice in suspected cancer and should be read in full.

Quality statement

People with suspected cancer who are referred to a cancer service are given written information encouraging them to attend.

Rationale

Providing information to help people with suspected cancer to understand the importance of attending their appointment is critical to avoid delay due to missed appointments and ensure early diagnosis. People should be reassured that most people who are referred will not be diagnosed with cancer. This should help to alleviate any fears or concerns people may have about the referral.

Quality measures

The following measures can be used to assess the quality of care or service provision specified in the statement. They are examples of how the statement can be measured and can be adapted and used flexibly.
Structure
Evidence of local arrangements to ensure that people with suspected cancer who are referred to a cancer service are given written information to encourage them to attend.
Data source: Local data collection.
Process
Proportion of referrals of people with suspected cancer to a cancer service for which there is a recorded discussion when they are offered the referral about information to encourage attendance.
Numerator – the number in the denominator for which there is a record of a discussion when the referral was offered about information to encourage attendance.
Denominator – the number of referrals of people with suspected cancer to a cancer service.
Data source: Local data collection.
Outcome
a) Number of missed appointments.
Data source: Local data collection.
b) Patient satisfaction with information provided.
Data source: Local data collection.
c) Time to cancer diagnosis.
Data source: Local data collection.

What the quality statement means for different audiences

Service providers (primary care, secondary care and cancer services) ensure that systems are in place for people with suspected cancer who are referred to a cancer service to be given written information to encourage attendance when they are offered the referral.
Healthcare professionals (such as GPs or practice nurses) give people with suspected cancer written information when they are referred to a cancer service, to encourage them to attend and understand the need to do so.
Commissioners (clinical commissioning groups and NHS England) ensure that they commission services that provide written information to encourage attendance when referrals to cancer services are made for people with suspected cancer.
People with suspected cancer are given written information when they are offered an appointment with a cancer specialist that explains what the appointment is for, what tests they might have and why, and what the results could mean. Giving people information will help to reassure them and encourage them to attend their appointment.

Source guidance

Suspected cancer: recognition and referral (2015, updated 2021) NICE guideline NG12, recommendations 1.14.1, 1.14.3 and 1.14.5

Definitions of terms used in this quality statement

Information to encourage attendance to cancer services
People who are given a referral are provided with information about:
  • where they are being referred
  • how to get further information about the type of cancer
  • potential test outcomes
  • alternative diagnoses
  • how long it will take to get a diagnosis or test results
  • whether they can take someone with them to the appointment
  • who to contact if they do not receive confirmation of an appointment
  • other sources of support.
[Adapted from NICE’s guideline on on suspected cancer: recognition and referral, recommendations 1.14.1, 1.14.3 and 1.14.5]

Equality and diversity considerations

Information given to a person with suspected cancer should be appropriate in terms of language and culture, because there may be different cultural meanings associated with the possibility of cancer.

Local health promotion activities

This quality statement is taken from the skin cancer quality standard. The quality standard defines clinical best practice in skin cancer and should be read in full.

Quality statement

Local authority health promotion activities on preventing skin cancer and recognising early signs are consistent with the messages in any national campaigns.

Rationale

Skin cancer is the most common form of cancer and, even though most types are preventable, its incidence has been increasing. People can recognise changes to their skin in early stages of the disease but some are still seeking help too late. Local health promotion activities, with messages consistent with any national campaigns, should minimise public confusion and increase the likelihood of behaviour change.

Quality measures

Structure
Evidence that the local authority health promotion activities on preventing skin cancer and recognising early signs are consistent with the messages in any national campaigns.
Data source: Local data collection.
Outcome
a) Incidence of skin cancer.
Data source: Public Health England National Cancer Registration and Analysis Service.
b) Proportion of melanoma diagnosed at stage 1 or 2.
Data source: Public Health England National Cancer Registration and Analysis Service.
c) Proportion of non-melanoma skin cancer diagnosed at stage 1 or 2.
Data source: Local data collection.

What the quality statement means for public health practitioners and commissioners

Public health practitioners ensure that they implement local authority health promotion activities on preventing skin cancer and recognising early signs using messages consistent with those in any national campaigns.
Commissioners (local authorities) ensure that local authority health promotion activities on preventing skin cancer and recognising early signs are consistent with the messages in any national campaigns.

What the quality statement means for people in the community

People in the community are given advice about how to prevent skin cancer, and how to recognise early signs, through local authority health promotion activities that reinforce the messages in any national skin cancer campaigns.

Source guidance

GPs managing low-risk basal cell carcinoma

This quality statement is taken from the skin cancer quality standard. The quality standard defines clinical best practice in skin cancer and should be read in full.

Quality statement

GPs who manage low risk basal cell carcinoma, including GPs with a special interest (GPwSI), maintain and audit records of their caseload.

Rationale

Low-risk basal cell carcinoma can sometimes be managed by GPs in the community, which can be more convenient for patients. Treatment in the community can also frequently be provided at a lower cost and free up capacity in hospitals. However, it is essential that this is balanced with ensuring that care offered in the community is as safe and effective as that in hospital. Maintaining and auditing records of their caseload can help in demonstrating competence.

Quality measures

Structure
Evidence of local arrangements to ensure that GPs who manage low risk basal cell carcinoma, including GPwSI, maintain and audit records of their caseload.
Data source: Local data collection.
Process
Proportion of GPs managing low risk basal cell carcinoma, including GPwSI, who audited their caseload within the past 12 months.
Numerator – number in the denominator who audited their caseload within the past 12 months.
Denominator – number of GPs managing low risk basal cell carcinoma, including GPwSI.
Data source: Local data collection.
Outcome
a) Proportion of skin lesions excised by GPs and GPwSI in dermatology and skin surgery that are subsequently confirmed as low risk basal cell carcinomas.
Data source: Local data collection.
b) Patient safety incidents reported related to removal of basal cell carcinomas in primary care.
Data source: Local data collection.

What the quality statement means for service providers, healthcare professionals and commissioners

Service providers (GP practices) ensure that GPs managing low risk basal cell carcinoma, including GPwSI, maintain and audit records of their caseload.
Healthcare professionals (GPs and GPwSI) managing low risk basal cell carcinoma maintain and audit records of their caseload.
Commissioners (NHS England and clinical commissioning groups) ensure that GPs who manage low risk basal cell carcinoma, including GPwSI, maintain and audit records of their caseload.

What the quality statement means for patients and carers

People who are having treatment from a GP for a type of skin cancer called low risk basal cell carcinoma receive treatment that is safe and effective.

Source guidance

Definitions of terms used in this quality statement

Low-risk basal cell carcinoma
Low-risk basal cell carcinoma is defined as set out in ‘Models of care’ in NICE’s guidance on improving outcomes for people with skin tumours including melanoma.
Competence in managing low-risk basal cell carcinoma
NICE’s guidance on improving outcomes for people with skin tumours including melanoma outlines criteria for assessing competence and accrediting practitioners.

Suspected cancer pathway referrals

This quality statement is taken from the skin cancer quality standard. The quality standard defines clinical best practice in skin cancer and should be read in full.

Quality statement

People with suspected malignant melanoma are referred using a suspected cancer pathway for an appointment within 2 weeks.

Rationale

Timely referral to a specialist is important for a quick and accurate diagnosis of skin cancer. The specialist will usually be working as part of the local hospital skin cancer multidisciplinary team and can provide rapid diagnosis, treatment, management and follow up for most people with skin cancer. Some squamous cell carcinomas, basal cell carcinomas and less common skin cancers may also need urgent referrals, in line with clinical judgement.

Quality measures

Structure
Evidence of local arrangements and clinical protocols ensuring that a suspected cancer pathway is in place for suspected malignant melanoma.
Data source: Local data collection.
Process
Proportion of confirmed malignant melanomas that were referred using a suspected cancer pathway for an appointment within 2 weeks.
Numerator – number in the denominator that were referred using a suspected cancer pathway for an appointment within 2 weeks.
Denominator – number of confirmed malignant melanomas.
Data source: NHS England Cancer waiting times.
Outcome
a) Time between GP referral for suspected skin cancer and specialist assessment.
Data source: NHS England Cancer waiting times.
b) Time from GP referral for suspected skin cancer to first definitive treatment.
Data source: NHS England Cancer waiting times.

What the quality statement means for service providers, healthcare professionals and commissioners

Service providers (GP practices and secondary care providers) ensure that systems are in place for people presenting with suspected malignant melanoma to be referred using a suspected cancer pathway for an appointment within 2 weeks.
Healthcare professionals (such as GPs or secondary care clinicians) ensure that they refer people with suspected malignant melanoma using a suspected cancer pathway for an appointment within 2 weeks.
Commissioners (NHS England, clinical commissioning groups) ensure that services they commission refer people with suspected malignant melanoma using a suspected cancer pathway for an appointment within 2 weeks.

What the quality statement means for patients and carers

People who have skin lesions, such as damaged or injured patches of skin or new, large, changing or unusual looking moles, and whose GP thinks it is a type of skin cancer called malignant melanoma, are referred for an appointment to see a specialist within 2 weeks.

Source guidance

Definitions of terms used in this quality statement

Suspected cancer pathway referral
The patient is seen within the national target for cancer referrals. This was 2 weeks at the time of publication of the NICE guideline on suspected cancer: recognition and referral.

Dermoscopy

This quality statement is taken from the skin cancer quality standard. The quality standard defines clinical best practice in skin cancer and should be read in full.

Quality statement

People with pigmented skin lesions undergoing a specialist assessment have the lesions examined using dermoscopy.

Rationale

Dermoscopy performed by suitably trained specialists is more sensitive and more specific in classifying skin lesions than clinical examination with the naked eye. It lessens the chance of missing a diagnosis of melanoma and reduces the number of unnecessary surgical procedures to remove benign lesions.

Quality measures

Structure
Evidence of local arrangements and clinical protocols to ensure that people undergoing specialist assessment of pigmented skin lesions are examined using dermoscopy.
Data source: Local data collection.
Process
Proportion of pigmented skin lesions undergoing specialist assessment that are examined using dermoscopy.
Numerator – number in the denominator examined using dermoscopy.
Denominator – number of pigmented skin lesions undergoing specialist assessment.
Data source: Local data collection.
Outcome
a) Pigmented skin lesions not selected for biopsy that are subsequently confirmed as melanoma
Data source: Public Health England Cancer stats tool and local data collection.
b) Proportion of melanoma diagnosed at stage 1 or 2.
Data source: Public Health England, National Cancer Registration and Analysis Service.

What the quality statement means for service providers, healthcare professionals and commissioners

Service providers (local hospital skin cancer multidisciplinary teams and specialist skin cancer multidisciplinary teams) ensure that systems are in place for using dermoscopy during specialist assessment of pigmented skin lesions. Service providers should also ensure that those using dermoscopy have formal training.
Healthcare professionals (members of local hospital skin cancer multidisciplinary teams or specialist skin cancer multidisciplinary teams) undertaking specialist assessment of pigmented skin lesions ensure that they examine the lesions using dermoscopy. They should include formal training as part of their continuing professional development.
Commissioners (clinical commissioning groups and NHS England) ensure that the specialist services they commission have trained specialists who use dermoscopy to examine pigmented skin lesions.

What the quality statement means for patients and carers

People with skin lesions (such as damaged or injured patches of skin or new, large, changing or unusual looking moles) that are being assessed by a specialist have the lesions examined using a magnifying tool called a dermatoscope, which gives a more accurate view of the lesion.

Source guidance

Definitions of terms used in this quality statement

Specialist assessment
An assessment carried out by a doctor trained in the diagnosis of skin malignancy, normally a dermatologist, who is a member of either a local hospital skin cancer multidisciplinary team or a specialist skin cancer multidisciplinary team.
[Adapted from NICE’s guideline on improving outcomes for people with skin tumours including melanoma, key recommendations (page 8).]

Skin cancer clinical nurse specialist

This quality statement is taken from the skin cancer quality standard. The quality standard defines clinical best practice in skin cancer and should be read in full.

Quality statement

People with malignant melanoma or squamous cell carcinoma have access to a skin cancer clinical nurse specialist.

Rationale

Skin cancer clinical nurse specialists can provide specialist guidance and support at all stages of care and treatment, including follow up. They can act as a source of information (including about local support groups), psychological support and palliative care if needed. People with other forms of skin cancer may also need support from a skin cancer clinical nurse specialist, depending on their individual needs and the impact of their disease.

Quality measures

Structure
Evidence of local arrangements and clinical protocols to ensure that skin cancer clinical nurse specialists are available for people with malignant melanoma or squamous cell carcinoma.
Data source: Local data collection.
Process
Proportion of people with malignant melanoma or squamous cell carcinoma who have a skin cancer clinical nurse specialist.
Numerator – number in the denominator who have a skin cancer clinical nurse specialist.
Denominator – number of people with malignant melanoma or squamous cell carcinoma.
Data source: (Quality Health National Cancer Patient Experience Survey and National Cancer Intelligence Network Cancer Outcomes and Services Dataset.
Outcome
a) Quality of life among people with malignant melanoma or squamous cell carcinoma.
Data source: Quality Health National Cancer Patient Experience Survey.
b) Satisfaction with support received from skin cancer clinical nurse specialist, reported by people with skin cancer.
Data source: Quality Health National Cancer Patient Experience Survey.

What the quality statement means for service providers, healthcare professionals and commissioners

Service providers (secondary and tertiary care) ensure that skin cancer multidisciplinary teams have a skin cancer clinical nurse specialist to support people with malignant melanoma or squamous cell carcinoma under their care.
Healthcare professionals (members of local hospital skin cancer multidisciplinary teams or specialist skin cancer multidisciplinary teams) ensure that people with malignant melanoma or squamous cell carcinoma have access to a skin cancer clinical nurse specialist.
Commissioners (clinical commissioning groups and NHS England) ensure that there are enough skin cancer clinical nurse specialists to support all people with malignant melanoma or squamous cell carcinoma.

What the quality statement means for patients and carers

People with a type of skin cancer called malignant melanoma or squamous cell carcinoma have a skin cancer nurse specialist who can provide information, advice and support.

Source guidance

Sentinel lymph node biopsy

This quality statement is taken from the skin cancer quality standard. The quality standard defines clinical best practice in skin cancer and should be read in full.

Quality statement

People with stage IB–IIC melanoma with a Breslow thickness of more than 1 mm have a discussion about the advantages and disadvantages of sentinel lymph node biopsy as a staging procedure.

Rationale

Sentinel lymph node biopsy helps to find out whether cancer has spread to the lymph nodes. It is better than ultrasound scans at finding very small deposits of cancers in the lymph nodes. However, it is not a form of treatment and, as with all invasive procedures, it has associated risks and complications that should be discussed with the person to enable shared decision making.

Quality measures

Structure
Evidence of local arrangements and clinical protocols to ensure that the advantages and disadvantages of sentinel lymph node biopsy as a staging procedure are discussed with people with stage IB–IIC melanoma with a Breslow thickness of more than 1 mm.
Data source: Local data collection.
Process
Proportion of people with stage IB–IIC melanoma with a Breslow thickness of more than 1 mm who have a discussion about the advantages and disadvantages of sentinel lymph node biopsy as a staging procedure.
Numerator – number in the denominator who have a discussion about the advantages and disadvantages of sentinel lymph node biopsy as a staging procedure.
Denominator – number of people with stage IB–IIC melanoma with a Breslow thickness of more than 1 mm.
Data source: Local data collection.
Outcome
Satisfaction with support received when deciding the best treatment, reported by people with skin cancer.
Data source: Quality Health National Cancer Patient Experience Survey.

What the quality statement means for service providers, healthcare professionals and commissioners

Service providers (secondary and tertiary care) ensure that systems are in place for people with stage IB–IIC melanoma with a Breslow thickness of more than 1 mm to have a discussion about the advantages and disadvantages of sentinel lymph node biopsy as a staging procedure.
Healthcare professionals (members of local hospital skin cancer multidisciplinary teams or specialist skin cancer multidisciplinary teams) discuss the advantages and disadvantages of sentinel lymph node biopsy as a staging procedure with people who have stage IB–IIC melanoma with a Breslow thickness of more than 1 mm.
Commissioners (clinical commissioning groups and NHS England) ensure that in the services they commission the advantages and disadvantages of sentinel lymph node biopsy as a staging procedure are discussed with people who have stage IB–IIC melanoma with a Breslow thickness of more than 1 mm.

What the quality statement means for patients and carers

People with a type of skin cancer called malignant melanoma that is classified as stage 1B or stage 2 discuss the pros and cons of a procedure called sentinel lymph node biopsy with their healthcare professional. In this procedure, 1 or 2 lymph nodes near the cancer are removed and checked to see whether there is melanoma in them. Sentinel lymph node biopsy does not cure melanoma, but it can help to find out whether it has spread and may lead to other treatment options.

Source guidance

Genetic testing

This quality statement is taken from the skin cancer quality standard. The quality standard defines clinical best practice in skin cancer and should be read in full.

Quality statement

People with unresectable or metastatic melanoma are offered genetic testing of the tumour.

Rationale

Genetic testing of tumour tissue can help with choosing more targeted and effective treatment for people with unresectable or metastatic melanoma.

Quality measures

Structure
Evidence of local arrangements and clinical protocols to provide genetic testing of the tumours for people with unresectable or metastatic melanoma.
Data source: Local data collection.
Process
Proportion of people with unresectable or metastatic melanoma who receive genetic testing of the tumour.
Numerator – number in the denominator who receive genetic testing of the tumour.
Denominator – number of people with unresectable or metastatic melanoma.
Data source: Local data collection.
Outcome
1-year survival rates in people with diagnosed with unresectable or metastatic melanoma.

What the quality statement means for service providers, healthcare professionals and commissioners

Service providers (secondary and tertiary care) ensure that systems are in place to provide genetic testing of the tumour for people with unresectable or metastatic melanoma.
Healthcare professionals (specialist skin cancer multidisciplinary teams) offer people with unresectable or metastatic melanoma genetic testing of the tumour.
Commissioners (clinical commissioning groups and NHS England) ensure that they commission services that offer genetic testing of the tumour to people with unresectable or metastatic melanoma.

What the quality statement means for patients and carers

People with a type of skin cancer called unresectable or metastatic melanoma are offered genetic testing of their tumour to help find out whether a type of drug treatment called targeted systemic therapy might be suitable for them.

Source guidance

GP direct access to MRI

This quality statement is taken from the brain tumours (primary) and brain metastases in adults quality standard. The quality standard defines clinical best practice for brain tumours (primary) and brain metastases in adults and should be read in full.

Quality statement

GPs have direct access to MRI for adults with suspected brain tumour.

Rationale

Enabling GPs to use direct access for MRI will speed up the diagnosis process for adults with suspected brain tumour and may reduce the number of outpatient appointments needed. If MRI is contraindicated, GPs should use a CT scan.

Quality measures

The following measures can be used to assess the quality of care or service provision specified in the statement. They are examples of how the statement can be measured and can be adapted and used flexibly.
Structure
Evidence of local arrangements to give GPs direct access to MRI for adults with suspected brain tumour.
Data source: Data can be collected from information recorded locally by provider organisations, for example, service protocols that may be developed to support NHS England’s Neurosurgery Transformation Programme.
Process
Proportion of referrals for brain MRI that are GP direct referrals.
Numerator – the number in the denominator that are GP direct referrals.
Denominator – the number of referrals for brain MRI.
Data source: NHS England’s Diagnostic imaging dataset includes details of GP direct referrals for brain MRI.
Outcome
Time from presentation at GP to brain tumour diagnosis.
Data source: No routinely collected national data for this measure has been identified. Data can be collected from information recorded locally by healthcare professionals and provider organisations, for example, from patient records.

What the quality statement means for different audiences

Service providers (primary care, secondary care and community imaging services) ensure that direct access referral pathways are in place for GPs to refer adults with suspected brain tumour for MRI. These may be developed to support NHS England’s Neurosurgery Transformation Programme. Providers ensure imaging results are clear to inform GP decision making.
Healthcare professionals (GPs) can refer adults with suspected brain tumour directly for MRI.
Commissioners (such as integrated care systems, clinical commissioning groups and NHS England) ensure GP services can use direct access pathways to refer adults with suspected brain tumour directly for MRI. These may be developed to support NHS England’s Neurosurgery transformation programme.
Adults with symptoms that may suggest brain tumour can be referred directly by their GP for an MRI scan to find out if their symptoms are caused by brain tumour. This will ensure that brain tumours can be diagnosed as quickly as possible.

Source guidance

Suspected cancer: recognition and referral. NICE guideline NG12 (2015, updated 2021), recommendation 1.9.1

Definitions of terms used in this quality statement

Direct access
When a person is referred directly by their GP for a test in a specialist service and the GP retains responsibility for the person's care, including following up and acting on the results. [Adapted from NICE's guideline on suspected cancer, terms used in this guideline]
Adults with suspected brain tumour
Adults with progressive, sub-acute loss of central neurological function. [NICE's guideline on suspected cancer, recommendation 1.9.1]

Named healthcare professional

This quality statement is taken from the brain tumours (primary) and brain metastases in adults quality standard. The quality standard defines clinical best practice for brain tumours (primary) and brain metastases in adults and should be read in full.

Quality statement

Adults with brain tumours have a named healthcare professional who coordinates their health and social care support.

Rationale

Adults with any type of brain tumour may have complex needs, and support is provided by different health and social care services. Having a named healthcare professional to coordinate support will provide continuity of care, including making sure individual needs are assessed and care plans are in place. It will enable adults with brain tumours and their family and carers to access advice and support when they need it. This will improve their experience and quality of life throughout the whole care pathway.

Quality measures

The following measures can be used to assess the quality of care or service provision specified in the statement. They are examples of how the statement can be measured and can be adapted and used flexibly.
Structure
Evidence of local processes to ensure that adults with brain tumours are assigned a named healthcare professional who coordinates their health and social care support at all stages of the care pathway.
Data source: Data can be collected from information recorded locally by provider organisations, for example from service protocols.
Process
Proportion of adults with brain tumours who have the name and contact details of a healthcare professional who coordinates their health and social care support.
Numerator – the number in the denominator who have the name and contact details of a healthcare professional who coordinates their health and social care support.
Denominator – the number of adults with brain tumours.
Data source: No routinely collected national data for this measure has been identified. Data can be collected from information recorded locally by healthcare professionals and provider organisations, for example, audit of patient records. Providers may wish to check if some groups are less likely to have a named healthcare professional, such as those with a non-malignant tumour or those diagnosed following an emergency presentation. NHS England’s National Cancer Patient Experience Survey includes data for part of the pathway for adults with brain tumours admitted to hospital for treatment who were given the name of a clinical nurse specialist who would support them during treatment.
Outcome
Proportion of adults with brain tumours who are satisfied with the coordination of their health and social care support by their named healthcare professional.
Numerator – the number in the denominator who are satisfied with the coordination of their health and social care support by their named healthcare professional.
Denominator – the number of adults with brain tumours.
Data source: No routinely collected national data for this measure has been identified. Data could be collected from a local survey of adults with brain tumours and their family and carers. NHS England’s National Cancer Patient Experience Survey includes data on ease of contacting a clinical nurse specialist for adults with brain tumours receiving hospital treatment.

What the quality statement means for different audiences

Service providers (such as primary, secondary and tertiary care services) ensure that healthcare professionals with the necessary skills are available to support adults with any type of brain tumour. Providers ensure that protocols are in place with local partners for a named healthcare professional to coordinate health and social care support for adults with any type of brain tumour during all stages of their care.
Healthcare professionals (such as members of the multidisciplinary team) ensure that adults with any type of brain tumour and their family and carers know how to contact the healthcare professional who coordinates their health and social care support. Healthcare professionals share information with the named healthcare professional to allow them to coordinate care for adults with brain tumours. Named healthcare professionals provide support and information to adults with brain tumours and their family and carers, carry out assessments at key points of care and make referrals when needed.
Commissioners (such as integrated care systems, clinical commissioning groups and NHS England) ensure that the services they commission have enough capacity to provide named healthcare professionals who coordinate health and social care support for adults with any type of brain tumour throughout all stages of care.
Adults with any type of brain tumour can contact a healthcare professional who coordinates their health and social care support for information, advice and support throughout their care.

Source guidance

Definitions of terms used in this quality statement

Named healthcare professional who coordinates health and social care support
The named healthcare professional should promote continuity of care and manage transitions of care. This is done by assessing the person’s needs, ensuring care plans have been agreed with the person receiving care and that findings from assessments and care plans are communicated to others involved in the person’s care. Coordination of care across the patient pathway also includes ensuring people are referred to the appropriate multidisciplinary services at any time. The named healthcare professional ensures that adults with any type of brain tumour, their family and carers know who to contact when help and advice is needed.
The named healthcare professional could be a key worker and will have expertise in the care of adults with brain tumours. The named healthcare professional is likely to be the clinical nurse specialist or allied healthcare professional most closely involved with a person’s care. The role should be transferred to the most appropriate healthcare professional as the person’s needs change or at transitional points in the care pathway. [Adapted from NICE’s cancer service guideline on improving outcomes for people with brain and other central nervous system tumours, section 2 recommendations]

Equality and diversity considerations

Named healthcare professionals should ensure that adults with any type of brain tumour are provided with information that they can easily read and understand themselves, or with support, so that they can communicate effectively with health and care services. Information should be in a format that suits their needs and preferences. Adults with cognitive impairment may need support and more time to process information. Information should be accessible to people who do not speak or read English, and it should be culturally appropriate. People should have access to an interpreter (including British Sign Language) or advocate if needed. For people with additional needs related to a disability, impairment or sensory loss (including any disability that develops because of the tumour and the treatment received), information should be provided as set out in NHS England's Accessible Information Standard.

5-aminolevulinic acid-guided-resection

This quality statement is taken from the brain tumours (primary) and brain metastases in adults quality standard. The quality standard defines clinical best practice for brain tumours (primary) and brain metastases in adults and should be read in full.

Quality statement

Adults with radiologically enhancing suspected high-grade gliomas that are suitable for resection of all enhancing tumour have 5-aminolevulinic acid (5-ALA)-guided resection.

Rationale

Neurological resection is the first treatment for many gliomas (a type of brain tumour). But it can be very difficult to remove all the tumour. Although it is not possible to cure high-grade gliomas, 5-ALA-guided resection is more likely to result in complete or near-complete removal of the tumour and improves progression-free survival.

Quality measures

The following measures can be used to assess the quality of care or service provision specified in the statement. They are examples of how the statement can be measured and can be adapted and used flexibly.
Structure
Evidence that 5-ALA-guided resection is available for adults with radiologically enhancing suspected high-grade gliomas that are suitable for resection of all enhancing tumour.
Data source: Data can be collected from implementation plans including access to a fluorescence-detecting microscope and specialist skills to undertake 5-ALA-guided resection.
Process
Proportion of adults with radiologically enhancing suspected high-grade gliomas that are suitable for resection of all enhancing tumour who received 5-ALA-guided resection.
Numerator – the number in the denominator who received 5-ALA-guided resection.
Denominator – the number of adults with radiologically enhancing suspected high-grade gliomas that are suitable for resection of all enhancing tumour.
Data source: No routinely collected national data for this measure has been identified. Data can be collected from information recorded locally by healthcare professionals and provider organisations, for example, from patient records.
Outcome
a) Proportion of adults with radiologically enhancing high-grade gliomas that are suitable for resection of all enhancing tumour who underwent resection where a 95% or greater reduction in tumour volume was achieved.
Numerator – the number in the denominator who underwent resection where a 95% or greater reduction in tumour volume was achieved.
Denominator – the number of adults with radiologically enhancing high-grade gliomas that are suitable for resection of all enhancing tumour.
Data source: No routinely collected national data for this measure has been identified. Data can be collected from information recorded locally by healthcare professionals and provider organisations, for example, from patient records.
b) Progression-free survival in adults with radiologically enhancing high-grade gliomas that are suitable for resection of all enhancing tumour who had 5-ALA-guided resection.
Data source: No routinely collected national data for this measure has been identified. Data can be collected from information recorded locally by healthcare professionals and provider organisations, for example, from patient records.

What the quality statement means for different audiences

Service providers (such as specialist regional centres) ensure that specialist resources, processes and pathways are in place for adults with radiologically enhancing suspected high-grade gliomas that are suitable for resection of all enhancing tumour to have 5-ALA-guided resection.
Healthcare professionals (such as neurosurgeons) are aware of the local pathways for adults with radiologically enhancing suspected high-grade gliomas that are suitable for resection of all enhancing tumour and ensure that they receive 5-ALA-guided resection from a specialist.
Commissioners (NHS England) commission services that have the capacity and expertise to provide 5-ALA-guided resection to adults with radiologically enhancing suspected high-grade gliomas that are suitable for resection of all enhancing tumour.
Adults with a suspected high-grade glioma (a type of brain tumour) that is suitable for surgery to remove the tumour have an operation that ensures as much of the tumour as possible is removed.

Source guidance

Risk of late effects of treatment

This quality statement is taken from the brain tumours (primary) and brain metastases in adults quality standard. The quality standard defines clinical best practice for brain tumours (primary) and brain metastases in adults and should be read in full.

Quality statement

Adults who finish treatment for brain tumours have an assessment and discussion about their risk of late effects of treatment at their first follow-up appointment.

Rationale

The risk of late effects of treatment will be discussed with adults with brain tumours as part of the consent process before treatment. This discussion should be revisited when treatment is finished (at the first follow-up appointment after finishing treatment) so that the person’s individual risk can be assessed based on the treatment they received. Early identification of a person’s potential late effects of treatment for a brain tumour, which can occur months or years later, may allow the risk to be modified and the effect to be quickly identified through ongoing monitoring and treated. This can increase the length and quality of life for people who finish treatment.

Quality measures

The following measures can be used to assess the quality of care or service provision specified in the statement. They are examples of how the statement can be measured and can be adapted and used flexibly.
Structure
Evidence of local protocol to assess and discuss the risk of late effects of treatment with adults who finish treatment for brain tumours, at their first follow-up appointment.
Data source: Data could be collected from information recorded locally by healthcare professionals and provider organisations, for example, from service protocol and written treatment summaries.
Process
a) Proportion of adults who finish treatment for brain tumours who have an assessment for their risk of late effects of treatment at their first follow-up appointment.
Numerator – the number in the denominator who have an assessment for their risk of late effects of treatment at their first follow-up appointment.
Denominator – the number of adults who finish treatment for brain tumours.
Data source: Data could be collected from information recorded locally by healthcare professionals and provider organisations, for example, from patient records.
b) Proportion of adults who finish treatment for brain tumours who have a documented discussion about their risk of late effects of treatment at their first follow-up appointment.
Numerator – the number in the denominator who have a documented discussion about their risk of late effects of treatment at their first follow-up appointment.
Denominator – the number of adults who finish treatment for brain tumours.
Data source: Data could be collected from information recorded locally by healthcare professionals and provider organisations, for example, from patient records.
Outcome
Adults who finish treatment for brain tumours feel informed about their risk of late effects of treatment.
Data source: Data could be collected from a local survey of adults who finish treatment for brain tumours and their family and carers.

What the quality statement means for different audiences

Service providers (such as secondary and tertiary care services and specialist regional centres) ensure that processes are in place to assess adults who finish treatment for brain tumours for the risk of late effects of treatment at their first follow-up appointment and to record any risks in their written treatment summary. Providers ensure that staff can explain and discuss any risk of late effects of treatment with the person and their family and carers (if appropriate). Providers ensure that referral pathways are in place for ongoing monitoring for late effects of treatment.
Healthcare professionals (such as clinical oncologists and therapeutic radiographers) assess adults who finish treatment for brain tumours for the risk of late effects of treatment at their first follow-up appointment and record any risks in their written treatment summary. Healthcare professionals explain and discuss any risk of late effects of treatment with the person and their family and carers (if appropriate). Healthcare professionals refer adults who finish treatment for brain tumours for monitoring of potential late effects of treatment if needed.
Commissioners (NHS England) commission services that carry out assessments for adults who finish treatment for brain tumours for the risk of late effects of treatment at their first follow-up appointment and discuss any risks with the person and their family and carers (if appropriate). Commissioners work with providers to ensure referral pathways are in place for ongoing monitoring for late effects of treatment.
Adults who finish treatment for brain tumours have an assessment at their first follow-up appointment to find out if they might develop side effects after their treatment. Their healthcare professional will explain any risks to them and their family and carers (if appropriate) and discuss how the risks will be managed.

Source guidance

Definitions of terms used in this quality statement

Late effects of treatment
People with brain tumours can develop side effects of treatment months or years after treatment. The side effects can include:
  • cataracts
  • cavernoma
  • cognitive decline
  • epilepsy
  • hearing loss
  • hypopituitarism
  • infertility
  • neuropathy (for example, nerve damage causing visual loss, numbness, pain or weakness)
  • radionecrosis
  • secondary tumours
  • SMART (stroke-like migraine attacks after radiotherapy)
  • speech, language and communication difficulties
  • stroke.

Equality and diversity considerations

It is important for providers to make reasonable adjustments to ensure that adults with additional needs, such as physical, sensory and learning disabilities or cognitive impairment, and people who do not speak or read English, or who have communication difficulties, can have an assessment and discussion about potential late effects of treatment that is accessible and takes account of their needs. Healthcare professionals should be aware that adults with brain tumours can develop a disability because of their tumour, the treatment they receive and potential late effects of their treatment. People should have access to an interpreter (including British Sign Language) or advocate if needed. Adults with cognitive impairment may need support and more time to process information.

Neurological rehabilitation

This quality statement is taken from the brain tumours (primary) and brain metastases in adults quality standard. The quality standard defines clinical best practice for brain tumours (primary) and brain metastases in adults and should be read in full.

Quality statement

Adults with brain tumours have access to neurological rehabilitation in the community and as an outpatient or inpatient.

Rationale

Adults with any type of brain tumour often have complex physical, cognitive and psychological needs. Providing access to neurological rehabilitation locally in the community and in hospital, in a setting that can meet their individual needs, will give people the support they might need to have the best quality of life. Access to neurological rehabilitation should be available at every stage of treatment and follow up.

Quality measures

The following measures can be used to assess the quality of care or service provision specified in the statement. They are examples of how the statement can be measured and can be adapted and used flexibly.
Structure
Evidence of local arrangements to provide neurological rehabilitation in the community and as an outpatient or inpatient, for adults with brain tumours.
Data source: Data can be collected from information recorded locally by healthcare professionals and provider organisations, for example, from referral criteria and pathways to neurological rehabilitation services.
Outcome
Health-related quality of life for adults with brain tumours.
Data source: No routinely collected national data for this measure has been identified. Data could be collected from a local quality-of-life survey of adults with brain tumours and their family and carers including patient-reported outcome measures.

What the quality statement means for different audiences

Service providers (such as primary and secondary care services) ensure that there are recognised referral pathways for adults with brain tumours to neurological rehabilitation in the community and as an outpatient or inpatient, at all stages of their care.
Healthcare professionals (such as oncologists, neurosurgeons and keyworkers) are aware of referral pathways to neurological rehabilitation in the community and as an outpatient or inpatient, for adults with brain tumours. Healthcare professionals support adults with brain tumours to access neurological rehabilitation if they need to.
Commissioners (such as integrated care systems and clinical commissioning groups) commission services with sufficient capacity to provide neurological rehabilitation in the community and as an outpatient or inpatient, for adults with brain tumours at all stages of their care.
Adults with brain tumours can get support from neurological rehabilitation services in the community or in hospital to improve any physical, emotional or psychological problems they experience at any stage of their care.

Source guidance

Definitions of terms used in this quality statement

Neurological rehabilitation
Rehabilitation is defined by the World Health Organization as ‘a set of interventions designed to optimise functioning and reduce disability in individuals with health conditions in interaction with their environment’. Functioning and disability are broad terms which are further conceptualised in the International Classification of Functioning, Disability and Health. This framework highlights the relationships and interplay between the following domains:
  • health condition
  • body structure and function
  • activity
  • participation
  • environmental factors
  • personal factors.
Rehabilitation is an overall process composed of individual interventions. These interventions range from the relatively simple, acting at one or a few domains, to complex interventions that may act across several domains. Rehabilitation is not a ‘one size fits all’ process and aims and goals should be identified and agreed with each person to fully inform personalised treatment and therapy programmes.
Inpatient rehabilitation is delivered through a range of services based within the NHS, the private sector and the voluntary sector. Referral criteria for these services are often specific for disease or condition, symptoms, locality or age group.
In the longer term, rehabilitation may be delivered through hospital or community services, including education-based services. It may also be provided by the private or voluntary sectors. Rehabilitation can involve impairment-focused approaches, for example, to improve mobility, or a less impairment-specific focus towards functional goals (such as managing personal care or preparing a meal). Referral criteria may include diagnosis, age, or time since injury, or may depend on the purpose or setting of the intervention (for example, vocational rehabilitation). [NICE’s guideline on rehabilitation for chronic neurological disorders including traumatic brain injury, final scope]

Equality and diversity considerations

Neurological rehabilitation should be available for all adults with brain tumours, including those who may be house-bound or in a nursing home. To ensure equality of access to rehabilitation, measures such as providing transport for people to attend sessions and holding the sessions in different locations should be considered. Rehabilitation should be provided in centres that have access for disabled people.
It is important for providers to make reasonable adjustments to ensure that adults with additional needs, such as physical, sensory and learning disabilities or cognitive impairment, and people who do not speak or read English, or who have communication difficulties, can access neurological rehabilitation services. Healthcare professionals should be aware that adults with brain tumours can develop a disability because of their tumour, the treatment they receive and potential late effects of their treatment. People should have access to an interpreter (including British Sign Language) or advocate if needed. Adults with cognitive impairment may need support and more time to process information.

Effective interventions library

Effective interventions library

Successful effective interventions library details

Implementation

Information for the public

NICE has written information for the public on each of the following topics.

Pathway information

Person-centred care

People have the right to be involved in discussions and make informed decisions about their care, as described in your care.
Making decisions using NICE guidelines explains how we use words to show the strength (or certainty) of our recommendations, and has information about prescribing medicines (including off label use), professional guidelines, standards and laws (including on consent and mental capacity), and safeguarding.

Your responsibility

Guidelines

The recommendations in this guideline represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, professionals and practitioners are expected to take this guideline fully into account, alongside the individual needs, preferences and values of their patients or the people using their service. It is not mandatory to apply the recommendations, and the guideline does not override the responsibility to make decisions appropriate to the circumstances of the individual, in consultation with them and their families and carers or guardian.
Local commissioners and providers of healthcare have a responsibility to enable the guideline to be applied when individual professionals and people using services wish to use it. They should do so in the context of local and national priorities for funding and developing services, and in light of their duties to have due regard to the need to eliminate unlawful discrimination, to advance equality of opportunity and to reduce health inequalities. Nothing in this guideline should be interpreted in a way that would be inconsistent with complying with those duties.
Commissioners and providers have a responsibility to promote an environmentally sustainable health and care system and should assess and reduce the environmental impact of implementing NICE recommendations wherever possible.

Technology appraisals

The recommendations in this interactive flowchart represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, health professionals are expected to take these recommendations fully into account, alongside the individual needs, preferences and values of their patients. The application of the recommendations in this interactive flowchart is at the discretion of health professionals and their individual patients and do not override the responsibility of healthcare professionals to make decisions appropriate to the circumstances of the individual patient, in consultation with the patient and/or their carer or guardian.
Commissioners and/or providers have a responsibility to provide the funding required to enable the recommendations to be applied when individual health professionals and their patients wish to use it, in accordance with the NHS Constitution. They should do so in light of their duties to have due regard to the need to eliminate unlawful discrimination, to advance equality of opportunity and to reduce health inequalities.
Commissioners and providers have a responsibility to promote an environmentally sustainable health and care system and should assess and reduce the environmental impact of implementing NICE recommendations wherever possible.

Medical technologies guidance, diagnostics guidance and interventional procedures guidance

The recommendations in this interactive flowchart represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, healthcare professionals are expected to take these recommendations fully into account. However, the interactive flowchart does not override the individual responsibility of healthcare professionals to make decisions appropriate to the circumstances of the individual patient, in consultation with the patient and/or guardian or carer.
Commissioners and/or providers have a responsibility to implement the recommendations, in their local context, in light of their duties to have due regard to the need to eliminate unlawful discrimination, advance equality of opportunity, and foster good relations. Nothing in this interactive flowchart should be interpreted in a way that would be inconsistent with compliance with those duties.
Commissioners and providers have a responsibility to promote an environmentally sustainable health and care system and should assess and reduce the environmental impact of implementing NICE recommendations wherever possible.

Supporting information

Major features of the lesions (scoring 2 points each):
  • change in size
  • irregular shape
  • irregular colour.
Minor features of the lesions (scoring 1 point each):
  • largest diameter 7 mm or more
  • inflammation
  • oozing
  • change in sensation.
In this guidance children are aged from birth to 15 years and young people are aged 16 to 24 years.
Separate recommendations have been made for adults and for children and young people to reflect that there are different referral pathways. However, in practice young people (aged 16 to 24) may be referred using either an adult or children's pathway depending on their age and local arrangements.
In this guidance 'people' applies to all ages, and 'men' and 'women' to people 16 and over.
Separate recommendations have been made for adults and for children and young people to reflect that there are different referral pathways. However, in practice young people (aged 16 to 24) may be referred using either an adult or children's pathway depending on their age and local arrangements
Use the recommendations in this NICE Pathway to guide referrals.
  • If still uncertain about whether a referral is needed, consider contacting a specialist.
  • Consider a review for people with any symptom associated with increased cancer risk who do not meet the criteria for referral or investigative action.

Diagnostic and referral processes

Discussion with a specialist (for example, by telephone or email) should be considered if there is uncertainty about the interpretation of symptoms and signs, and whether a referral is needed. This may also enable the primary healthcare professional to communicate their concerns and a sense of urgency to secondary healthcare professionals when symptoms are not classical.
Put in place local arrangements to ensure that letters about non-urgent referrals are assessed by the specialist, so that the person can be seen more urgently if necessary.
Include all appropriate information in referral correspondence, including whether the referral is urgent or non-urgent.
Use local referral proformas if these are in use.
Once the decision to refer has been made, make sure that the referral is made within 1 working day.

Persistent parental concern and anxiety

Take into account the insight and knowledge of parents and carers when considering making a referral for suspected cancer in a child or young person. Consider referral for children if their parent or carer has persistent concern or anxiety about the child's symptoms, even if the symptoms are most likely to have a benign cause.

Waiting periods and missed appointments

Put in place local arrangements to ensure that there is a maximum waiting period for non-urgent referrals, in accordance with national targets and local arrangements.
Ensure local arrangements are in place to identify people who miss their appointments so that they can be followed up.

Safety netting

Safety netting is the active monitoring in primary care of people who have presented with symptoms. It has 2 separate aspects:
  • timely review and action after investigations
  • active monitoring of symptoms in people at low risk (but not no risk) of having cancer to see if their risk of cancer changes.

Review and action after investigations

Ensure that the results of investigations are reviewed and acted upon appropriately, with the healthcare professional who ordered the investigation taking or explicitly passing on responsibility for this. Be aware of the possibility of false-negative results for chest X-rays and tests for occult blood in faeces.

Active monitoring

Consider a review for people with any symptom that is associated with an increased risk of cancer, but who do not meet the criteria for referral or other investigative action. The review may be:
  • planned within a time frame agreed with the person or
  • patient-initiated if new symptoms develop, the person continues to be concerned, or their symptoms recur, persist or worsen.

Glossary

(haemoglobin levels 12 g/dl or below for men and 11 g/dl or below for women)
(the finding has characteristics that could be caused by many things, including cancer)
(when a test is performed and primary care retain clinical responsibility throughout, including acting on the result)
(an acute admission or referral occurring within a few hours, or even more quickly if necessary)
(haemoglobin levels 12 g/dl or below for men and 11 g/dl or below for women)
(the continuation of specified symptoms and/or signs beyond a period that would normally be associated with self-limiting problems; the precise period will vary depending on the severity of symptoms and associated features, as assessed by the healthcare professional)
(unexplained vaginal bleeding more than 12 months after menstruation has stopped because of the menopause)
(a mass or lesion that has an appearance or a feel that makes the healthcare professional believe cancer is a significant possibility)
(symptoms or signs that have not led to a diagnosis being made by the healthcare professional in primary care after initial assessment (including history, examination and any primary care investigations))

Paths in this pathway

Pathway created: June 2015 Last updated: December 2021

© NICE 2021. All rights reserved. Subject to Notice of rights.

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