Fragmented care and guideline gaps

One in five cancers in the UK is first found in an emergency, usually late. Adding a cancer test to the blood already taken in A&E for over-60s with vague symptoms could catch some earlier.

A positive leftover-cancer blood test leaves patients frightened and their doctors unsure what to do. A specialist clinic could give them a plan and a trial.

People with dementia who develop cancer are often either overtreated or written off, and decisions are made without them. A clear pathway for assessment, consent and treatment planning would improve both.

Malnutrition is the commonest untreated complication in cancers of the gut, throat and pancreas. Putting a dietitian in the meeting where treatment is decided means it is seen and treated before chemotherapy starts, not after weight has been lost.

Any oncologist could send a difficult case, with the records, to a specialist centre and get a written expert opinion back within three days, free to the patient.

Pancreatic cancer grows and spreads quickly, and delays between the scan that finds it, the specialist meeting, the biopsy, the bile duct stent and the first chemotherapy or operation are measured in weeks. The proposal is a dedicated fast-track pathway with a national standard for the interval from first imaging to first treatment, reported by the audit.

Proven treatments, genomic tests and timely referrals routinely fail to reach the patients who qualify for them. Public trial networks such as the NCTN groups, EORTC and the UK NIHR portfolio would have to spend at least 10% of their funding on cluster-randomised or stepped-wedge trials of how to close that gap, cheap studies that use routine data.

Set a legal limit: anyone referred with suspected cancer should be told within 28 days whether they have it. Publish how every hospital performs each month.

Patients moving between hospitals often carry paper folders or nothing. A standard electronic summary of diagnosis, treatments, and doses that any system can read would stop repeated tests and dangerous gaps.

About six in every thousand gallbladders removed for stones contain cancer. A written pathway that sends every specimen to the pathologist, refers every T1b or deeper cancer to a liver surgeon within two weeks and books the second operation within eight would turn a lottery into a system.

Patients wait weeks for a manufacturing slot while other slots go unused when a patient drops out. A shared booking system would match spare slots to waiting patients.

Every newly diagnosed patient gets a named person whose job is to get them through appointments, tests, paperwork and money problems. Insurers should pay for it because it prevents delays and dropouts.

Patients would carry their full cancer history, scans and test results in a standard digital bundle they control and can hand to any doctor anywhere.

Rare cancers are often misdiagnosed, which sends patients down the wrong treatment path. Digital slide sharing could get every case to an expert within days.

People are invited separately for bowel, breast, cervical and lung screening, and partial participation is common. One appointment at 50 and 60, modelled on the NHS Health Check, offering every eligible test plus family history and risk assessment with navigation support, would raise uptake.

Cancer care has more handoffs than most conditions, hospital to home, surgery to chemotherapy, oncology back to the family doctor, and information and medications are lost at each. A standard handoff checklist plus pharmacist medication reconciliation covering oral anticancer drugs, steroids, anticoagulants and opioids at every transition would prevent avoidable adverse drug events cheaply.

Every triple-negative patient under 60 in the UK should be offered a BRCA test at diagnosis because the result now changes treatment, and many should be offered a trial, but no one publishes how many are. A national audit through existing cancer registration and genomic laboratory data would show the gap by region before anyone tries to close it.

A cancer patient with a fever or severe sickness during treatment should be seen quickly by a team that knows chemotherapy, not wait hours in a general emergency room.

Every patient newly diagnosed with advanced cancer would have their records reviewed by an expert centre within a week, without travelling. The review often changes the plan.

Most cancer drug approvals depend on a handful of facts already in the chart, such as the diagnosis, biomarker and line of therapy; sending those automatically in a standard format would return most decisions before the patient leaves the room.

Hospitals hold weekly meetings to decide each patient's plan but rarely check what happened afterwards. A simple loop that records the recommendation and checks it against what was done would catch dropped plans.

Palliative care given from the start of treatment for advanced cancer improves quality of life and may extend it. Instead of waiting for an oncologist to remember, the system should refer automatically when the diagnosis is recorded.

Travel and time off work are among the biggest costs families face; if consultations happen by video, blood tests locally and oral drugs by mail, most routine visits need no journey at all.

Pay hospitals a single amount for a whole course of cancer treatment, with extra for following the evidence, rather than paying per visit and per drug, which rewards fragmentation.

Computers can combine minor symptoms, blood tests and age into a cancer risk score in the background. Showing that score to the GP could get more people referred earlier.

When a hospital's real limit is the number of chemotherapy chairs and nurses, guidelines should favour treatments given by mouth or in fewer, shorter visits, if they work about as well.

Black women in the United States have about twice the odds of a triple-negative diagnosis and, in the UK POSH cohort, worse survival than White women despite equal chemotherapy use. The pivotal trials enrolled few of them. Enrolment targets tied to incidence, reported by ethnicity in every primary paper, would make the evidence match the disease.

Hepatitis C is now curable in weeks. Testing and treating where it is concentrated, and keeping those with scarring in surveillance afterwards, would cut liver cancer.

Choices like mastectomy versus lumpectomy, or whether to have chemotherapy after surgery, depend on what matters to the patient. Good decision aids exist but are rarely used; building them into the clinic workflow would change that.

Fewer than half of patients starting treatment that can damage fertility have a documented fertility discussion or referral, with worse rates for women, minorities and patients outside academic centres. An order-set trigger that refers every patient under 40 to reproductive medicine unless they actively decline would make the conversation routine and timely.

The one UK study to look found young Black women had more triple-negative breast cancer and worse survival than White women despite equal chemotherapy, but it ended in 2008 and covered women under 41. Routine cancer statistics could report triple-negative incidence, stage and survival by ethnicity every year; at present they do not.

If a practice's requests are approved almost every time, asking again wastes everyone's money; gold-card rules give such practices automatic approval and audit them instead.

Bowel cancer that has seeded the lining of the abdomen responds badly to drugs but well to a complete operation, and the heated chemotherapy that everyone added turned out to do nothing. What decides the outcome is whether the disease is found while it is still limited and whether the patient reaches a centre that can remove all of it.

Family doctors often do not know who is responsible for a cancer patient's blood pressure, diabetes or new symptom. Written agreements plus a same-day electronic question line to the oncologist would fill the gap.

Getting fitter and better nourished before an operation reduces complications and speeds recovery. It is cheap, but only a few hospitals do it.

Under-the-skin versions of atezolizumab, nivolumab and pembrolizumab take minutes rather than an hour and need no infusion chair, so they can be given by a nurse near home, cutting facility fees and travel.

For frail older patients, the journey to hospital can be the hardest part of treatment. Nurses can safely give some cancer treatments at home, which may help more people complete their course.

Hospital-at-home programmes deliver intravenous antibiotics, fluids, monitoring and daily nurse and physician visits in the patient's home, with equivalent or better outcomes and lower costs in general medicine. Extending them to low-risk fever after chemotherapy and dehydration, with payer recognition, would keep older cancer patients out of hospital beds, where they are most at risk of harm.

Hospitals rarely know what fraction of their patients got the recommended treatment. Software reading the electronic record can show each team, every month, where care deviated from guidelines.

Cancer treatment guidance changes constantly and takes years to reach many clinics. Make guidelines live documents that software can read, updated as evidence arrives and adapted to what each country can afford.

When a targeted drug stops working, the tumour has usually changed in a way you can read. Most patients still move to the next treatment on a protocol rather than on a test of what actually happened.

Pembrolizumab 400 mg every six weeks is approved and works like 200 mg every three weeks, and it halves the number of clinic visits, infusion chairs and travel days without changing the drug bill.

Risk-based follow-up guidelines key surveillance to cumulative dose and radiotherapy field. Survivors frequently cannot obtain either, so the guidelines are unusable even where someone is willing to follow them.

A patient with a rare cancer treated at a small hospital should have their case reviewed by the national experts by video before treatment starts. Make that referral automatic.

Instead of one overwhelmed national cancer hospital, organise care in tiers: district hospitals diagnose and give simple treatment, regional centres give chemotherapy and surgery, and the hub handles radiotherapy and complex cases.

Manage fevers, dehydration and other treatment side-effects at home with visiting nurses, wearables and video, instead of admitting people to hospital wards.

Let specially trained cancer pharmacists prescribe anti-sickness drugs, growth-factor support and routine dose adjustments under protocols, freeing oncologists for decisions only they can make.

A woman with a breast lump should be examined, scanned and biopsied on the same day, and hear the result within a few days, rather than visiting four times over two months.

The pancreas makes the enzymes that digest food, and a cancer in it, or the operation to remove it, leaves most patients unable to absorb what they eat. Capsules replacing those enzymes are cheap and recommended, yet UK records show only one patient in five was prescribed them. The proposal is to prescribe by default at diagnosis, publish each hospital's rate, and run the trial never done.

A substantial share of patients with advanced non-small-cell lung cancer start first-line treatment before their biomarker results arrive, or without full testing, and so miss targeted therapy. Letting the pathologist order the full genomic panel the moment a cancer of a defined type and stage is confirmed shortens time to result and makes testing complete.

Every person told they have cancer gets a named navigator, by law, who helps them understand options, book appointments, find trials and deal with money and work.

The same chemotherapy infusion costs payers and patients more in a hospital outpatient department than in a doctor's office; paying one rate would stop hospitals buying clinics to charge the higher price.

Antibiotics given in the weeks before immunotherapy are linked to much worse results. A simple stewardship rule could preserve benefit at no cost.

The WHO set three simple goals for breast cancer: most cancers found early, diagnosis within 60 days, and most patients finishing treatment. Every country should publish how it is doing on each, every year.

Where you have your cancer operation strongly affects whether you survive it. Publishing each hospital's adjusted results would push complex surgery towards the centres that do it well.

Labs already get tested on whether they score biomarkers correctly, but the results are private. Publishing them would let hospitals and patients avoid labs that get it wrong.

Every targeted result on this roadmap depends on a test happening fast enough to act on. In England nobody publishes what share of lung cancers are tested, how long the test takes, or, in Wales and Northern Ireland, how long the lung pathway takes at all.

In England and Wales a national audit now reports each year what share of people diagnosed with pancreatic cancer receive any treatment aimed at the cancer, how many are discussed by a specialist team and how many see a specialist nurse. The proposal is a national target for the treatment rate, published by hospital, so the trusts furthest behind are visible.

Weight loss, fatigue and unexplained pain do not point to one organ, so patients bounce between specialists. A single clinic that investigates such symptoms quickly finds cancers that would otherwise be found late.

Show each hospital, every month, how often its patients received the recommended treatment, compared with peers, so gaps are seen and closed.

How long people wait between first noticing something wrong and being diagnosed is barely measured. Recording it routinely and publishing it by hospital would expose where the system loses time.

When Black and white men in the United States are given the same treatment, the gap in dying of prostate cancer largely closes. The gap in dying of everything else does not. Cancer services measure the first and not the second, which means the surviving disparity is invisible to the people best placed to act on it.

Cancer survivors are a huge and growing population with specific long-term risks. Give each a plan matched to their risk, run automatically and shared with their family doctor.

Cancer often ruins families financially, and money worries make people skip treatment. Ask about finances at the first visit, as routinely as asking about allergies, and route people to assistance.

People with cancer are far more likely to go bankrupt than people without, and the ones who do have worse survival; a two-question screen at diagnosis plus a financial navigator catches the problem while it can still be fixed.

Hospitals rarely know which step, the scanner, the biopsy, the pathologist or the clinic slot, is causing the queue. Modelling the pathway like a factory line shows where a small change would remove weeks of waiting.

For each cancer type, agree the set of stains and tests that are always needed, and have the lab run them automatically on diagnosis rather than waiting for someone to ask.

One patient in twenty with pancreatic cancer carries an inherited gene fault, and most have no family history. Guidelines now say test every patient, which finds relatives who carry it too, but the yearly scans that catch cancer at stage I in carriers are still offered only in research programmes. The proposal is to make surveillance follow the test result automatically.

Every patient finishing treatment should get a clear document listing what they had, what to watch for, and when to be checked. Software can write it from the record so it actually happens.

About one man in eight with prostate cancer that has spread carries an inherited DNA repair fault, and about one in five has one in the tumour. The drugs for those faults have moved to the beginning of treatment, but the test is still usually done near the end, when it is too late to use the result.

Lymphoma is among the most curable common cancers where the drugs exist. Rituximab is thirty years old and still out of reach for many of the people who need it.

Poorer patients with lung cancer are less likely to be offered surgery or chemotherapy, at the same stage, in systems that are free at the point of use. That is a fixable problem in how care is delivered, not a fact about the disease.

Hospitals have fast, standard responses to sepsis and heart attacks. Cancer wasting has no such pathway, so it is noticed late and treated inconsistently.

Every positive stool test in England, from the screening programme and from the symptomatic pathway, ends in a colonoscopy. The thresholds have been lowered faster than the capacity to act on them, and who performs the test decides whether it prevents anything.

The fastest rise in bowel cancer is in people two decades younger than any screening programme, who reach diagnosis through symptoms, often after several visits. Screening cannot help them; the referral pathway can.

Patients on chemotherapy who report their symptoms weekly through an app, with nurses acting on alerts, live longer and visit emergency rooms less. This should be routine and paid for.

Exercise after colon cancer has a hazard ratio a drug would be licensed on. It is in the guidelines and in almost no budgets, because it is a staffed service rather than a product.