The NHS hidden waiting lists terrifying patients

Patients are facing delays stuck on hidden waiting lists that do not show up in the official figures in England, a BBC News investigation reveals.

The published waiting list stands at 7.6 million - but the true scale of the backlog is thought to be much higher.

This is because patients needing ongoing care are not automatically included in those figures - even if they face major delays.

NHS England said hospitals should be monitoring and counting such cases.

But BBC News found evidence suggesting this is not always the case.

The problem affects patients receiving ongoing care, as well as those removed from waiting lists even before starting treatment.

BBC News has spoken to patients waiting months and even years for vital treatment, such as cancer care, spinal treatment and others at risk of going blind because of deteriorating eyesight.

One of those is Andy Allen, 69, from Chelmsford, who has wet AMD, which causes vision to deteriorate.

He needs regular eight-weekly injections to protect his sight, but says he often waits longer with the latest gap being more than twice as long as it should be.

"It's really worrying. My eyesight is getting worse - and I do wonder if it is because of the delays."

Macular Society charity chief executive Cathy Yelf called the delays in the system a "tragedy".

"People are terrified at the prospect of losing their sight," she added.

The official waiting list tracks patients waiting to begin treatment.

Around 1.4 million treatments are recorded as beginning each month on average - with one in three affected by delays, according to data for 2022-23.

But there are more than 3 million other appointments and treatments carried out for patients who are receiving ongoing care.

Many will be getting timely care, but how many of those are delayed is not known. Some say millions could be affected over the course of a year.

Hospitals are meant to return patients facing unnecessary delays to the waiting list to ensure they are counted in the backlog figures.

But of 30 NHS trusts asked by BBC News how regularly this was happening, only three could provide figures.

Karen Hyde, from Insource, a company that helps hospitals manage waiting lists, said the guidance was "commonly ignored".

"This is a huge issue. The NHS does not incentivise hospitals to keep a close eye on these patients.

"We know there are long waits for those on the waiting list. For those not on the official waiting list, it is likely to be even worse - but the figures are not published."

She said another problem was that some patients face being taken off the waiting list before treatment starts - this can be done when the patient is not ready for treatment or if they have refused it.

But she said many hospitals had no reliable systems for tracking these patients, who could be simply "lost and delayed".

This has happened to Margaret Weston, who has basal cell carcinoma, a slow-growing form of skin cancer.

The risk of it spreading is very low, so the 64-year-old, from Lincolnshire, has been under the care of doctors in the East Midlands for the past few years.

But with three separate hospitals involved in her care, a mix-up saw her removed from the waiting list.

Ms Weston has now been upgraded to an urgent case and is waiting for surgery.

"It is so easy to fall through the gaps. Hospitals aren't monitoring these waits and not recording it properly.

"I'm terrified about what might happen now," she said.

Another patient BBC News has spoken to is now exploring taking legal action, after being put on a "holding" waiting list despite struggling with severe abdominal problems.

Hospital letters about their case, seen by BBC News, acknowledge these lists are not "manned routinely" and patients can be held up in the system.

Labour shadow health secretary Wes Streeting said the revelations were "utterly shocking".

He said if Labour won the election he would ensure the full extent of the hidden waiting lists were published "so we can level with the public and even more importantly take the action necessary to get those lists down".

Macmillan Cancer Support policy head Minesh Patel said patients receiving regular chemotherapy and radiotherapy - and those under surveillance to check if their cancer had returned - also faced delays.

"NHS staff are doing all that they can - but with limited resources, it's impossible for them to keep up," he added.

The British Heart Foundation said heart failure patients were at particular risk as they needed regular check-ups to ensure treatment was working.

A delay to changes in treatment could lead to "permanent and irreversible damage", the BHF's Dr Sonya Babu-Narayan said.

Health Foundation data analytics director Charles Tallack said there was too little focus on these "hidden waits".

"It's clearly a major problem - delays are putting patients at risk. We need better monitoring and oversight to see exactly what is happening."

An NHS England spokeswoman said: "National guidance is clear that if a regular follow-up review or treatment becomes overdue and a patient is waiting longer than the time agreed with their clinician, they should be added back on to the waiting list and therefore would be included in published figures."

The Department of Health and Social Care said cutting waiting times was one of the government's top five priorities, adding: "We expect trusts to comply with the guidance."

Additional reporting Nat Wright

Are you receiving ongoing care but finding your treatments are delayed? Share your experiences by emailing haveyoursay@bbc.co.uk.

Please include a contact number if you are willing to speak to a BBC journalist. You can also get in touch in the following ways:

If you are reading this page and can't see the form you will need to visit the mobile version of the BBC website to submit your question or comment or you can email us at HaveYourSay@bbc.co.uk. Please include your name, age and location with any submission.