Four million NHS patients ‘left in limbo’ waiting for diagnosis, warns Policy Exchange

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More than four million NHS patients are waiting to have a condition or complaint diagnosed, according to a new report from Policy Exchange. The report calls for the Government to invest £1.3bn in new capital funding for diagnostics to achieve a much faster, 8-week diagnosis.

New analysis undertaken by the think tank of the Referral to Treatment (RTT) Statistics from NHS England has found that 80% of the current NHS waiting list (more than 4.2 million people) are still without a decision to admit, effectively the earliest point of diagnosis, with average wait times across specialisms approaching ten months (37 weeks). This represents an enormous unknown clinical risk to the individual and the NHS – one in five cancers are picked up following a non-cancer referral.*

The paper warns that 90,000 cases of cancer are usually detected in patients on non-cancer pathways, meaning that there are likely to be hundreds of undiagnosed cancer patients sitting on a routine referral within each NHS hospital in England.

The report also calls for the NHS to urgently improve communication with the 5.3 million people in England – 1 in 10 of the population – who are currently waiting to be seen by clinicians in the wake of the Covid-19 pandemic.

The report, A Wait on Your Mind?, by Policy Exchange’s Head of Health Robert Ede and Sean Phillips, warns that millions are being “left in limbo”, with no idea how long it will be until they are treated.

Former NHS England National Medical Director Sir Bruce Keogh, and Former Health Secretary Rt Hon Stephen Dorrell, back the report, alongside Professor Neil Mortenson, President of the Royal College of Surgeons.

In a Preface to the report, Sir Bruce Keogh says:

“Whilst a tolerant British public played their part in reducing demand for non-COVID services, that tolerance must be repaid or it will wane with the pandemic, as families pay a very personal price for delays in diagnosis and treatment. 

Intolerable waiting lists are back. This is our next big test …both the public and NHS staff have now seen better and expect better.”

In a Foreword to the report, Rt Hon Stephen Dorrell, former Health Secretary, writes:

“In an age when Amazon can send a message which predicts to within two hours the time of delivery of a parcel sent from the Far East to your home, it is humiliating that the NHS is unable to offer any meaningful guidance on when it will be able to treat your painful or life limiting condition. Millions of patients are being kept in the dark about when they will be treated and how long they must wait – we cannot let this continue. After Covid, as waiting lists grow, the NHS needs a transparency revolution.”

Focus groups with patients in England waiting longer than six months have highlighted how many feel “left in the dark”.

On communication with patients over waiting lists, the report argues that:

1. The NHS must urgently enhance patient communication, with NHS Trusts rapidly investing in developing patient-centred information and communication materials.

2. The Government must invest in a priority NHS-led digital offer to support patients on the waiting list. These services could include appointment scheduling, list status, signposting to wider services, and made available through the NHS App.

Policy Exchange also calls for a new £1.3bn package for the diagnostics sector over this Parliament, which combined with existing funding would bring NHS capacity in line with the OECD average. This would be delivered in tranches over the next three years, commencing with £500m at the upcoming Comprehensive Spending Review. This must be accompanied by a new target to achieve a diagnosis within eight weeks of initial referral – currently patients wait on average 37 weeks.

Robert Ede, Head of Health and Social Care Policy at Policy Exchange and the lead author of the report, said:

“Operational transparency must improve. Current clinical prioritisation and waiting times are hidden from patients. Few are informed about their likely wait time, how this compares to their rights as set out in the NHS constitution, or how new prioritisation methodologies is being applied to their case. The ‘consumer’ of the service is being left in limbo, with limited support whilst they wait. There is evidence that the existing approach is also cementing health inequalities.” 

“There has been a lot of focus on those waiting a long time for treatment. But the figure that should be keeping the new NHS Chief Executive up at night is 4.2 million – the number of people with a routine referral still awaiting a decision from a specialist. This is an enormous clinical risk. A proportion of these patients will have a cancer and other urgent hidden condition. As we look to the spending review, Policy Exchange is calling for reform to the system, putting the funding and incentives in place to prioritise an NHS diagnostics revolution, whilst supporting patients as they wait for treatment.”

Professor Neil Mortensen, President of the Royal College of Surgeons of England said:

“We agree that the current state of the waiting list in England is politically unacceptable.  With more than 5.3 million on the waiting list, innovative solutions and investment are sorely needed. Policy Exchange are right to highlight that surgical hubs are one part of the answer.  73% of people say that if they needed an operation, they would be willing to travel to a surgical hub, if it was not their nearest local hospital. The recommendation that hubs should facilitate three session days and seven-day working is ambitious, but increasing activity is essential to bringing down the long backlog of operations.  We urge every Integrated Care System (ICS) in England to identify at least one ‘surgical hub’ where planned surgery can continue, with COVID cases now rising again.”

*The 4.2 million figure awaiting diagnosis was calculated by removing 1,020,705 patients which have a decision to admit from the current waiting list of 5,304,849. The figure is the most reasonable proxy for undiagnosed patients on a routine referral. This uses the most recent statistical release up to May 2021.