More than 250,000 people languish on hidden NHS waiting lists. Some die

before even appearing in official statistics. Insight investigates.

(Published in the Sunday Times, May 5, 2002)

When Iris Bailey suffered chest pains and was diagnosed with angina, she was

told that she needed a test to show how well her blood was circulating. The

waiting list for the thallium scan was three months – a delay not included

in published government figures.

Bailey, having worked as a hospital porter, accepted it with good grace and

put her faith in the National Health Service. The grandmother from Harlow,

Essex, kept busy helping to plan her son Gary’s wedding and hoped her

condition was not serious. Three weeks before she was due to have the scan,

she again suffered chest pains. This time it was decided that she needed an

angiogram, a heart test, at St Bartholomew’s hospital in London and that the

wait would be two weeks – another delay that many hospitals do not count in

the official waiting list figures.

David, another son, was so concerned that he sought assurances that his

mother would not die waiting for the angiogram. On the day he handed a

letter to the hospital’s management his mother, 75, had a fatal cardiac

arrest. It was more than four months since she had first felt ill in October

2000 but none of her waits counted in official statistics.

“For anyone to die waiting for a test is atrocious,” said David Bailey.

Independent health groups, such as the King’s Fund, say it is an indictment

of the waiting list system – a key measure of hospitals’ performance. Bailey

was an invisible patient left to languish.

What is even more shocking is evidence that hospital trusts are discreetly

moving patients from the published waiting list to the hidden ones.

Wittingly or not, it helps the government to trumpet improvements in NHS

performance.

The truth is, however, that many thousands of patients, perhaps similar to

Bailey, will still be waiting for tests and treatment that could save their

lives. An investigation of the way hospitals and the Department of Health

count NHS waits has revealed that an estimated 250,000 patients do not

appear in published figures.

To be fair, some will be waiting for scans or tests that will reveal nothing

untoward. For them the delay will not matter clinically, despite the anxious

wait. But for others, such as those needing radiotherapy for cancer, the

wait could be lethal.

As Joseph Meirion Thomas, a consultant surgeon at the Royal Marsden

hospital, puts it: “I would want to give pre-operative radiotherapy to

between 5% and 10% of my patients with sarcoma (cancerous tumours) to give

them a surgical advantage, but none gets it because of the waiting list.

“It’s disgraceful. It’s a waiting list that is creeping up and it’s a

waiting list you don’t know about – the hidden waiting list.”

IN opposition, Labour castigated the Conservative government over its

failure to publish details of patients waiting to see a consultant after

referral from a GP. Things would be different, it promised, if Labour was

elected.

Subsequently two published waiting lists set the standard. The first is the

outpatient list which shows the waits from referral by a GP to the first

appointment with a hospital consultant. The second is the wait for treatment

in hospital as an admission or a day case.

These figures, however, still do not cover the whole pathway from “pain to

scalpel”. Missing are waits for diagnostic tests, often to see whether

surgery is required; they can be as long as 20 months. The government says

these figures are not collected centrally and are not available.

Indeed, John Hutton, the health minister, told the House of Commons in

February: “Data is not collected on the number of patients waiting for

angiograms.”

The reality is that angiogram waiting lists – and lists for other diagnostic

tests – are being compiled in hospitals across the country. They are just

not being published.

One manager at the Norfolk and Norwich University Hospital Trust said, “I’ve

got these waits on the wall in front of me”, but refused to release the

figures. Other trusts also declined to reveal the figures after seeking

guidance from the health department.

Yet some hospitals are willing to release the figures on request; some even

include these delays in their official waiting list figures. They are now

finding themselves under pressure from the NHS Executive to remove them.

“They tried to persuade us to remove angiography off the waiting list but we

refused,” said one manager at a hospital which records angiograms in its

figures. “We think it’s a proper surgical procedure.”

The second category of tests being excluded from the official lists are

endoscopies, used to help to diagnose cancer among other things. Those

hospitals that have been counting patients waiting for these tests are now

being instructed to remove them.

In a letter to chief executives of trusts in southeast England last October,

Bob Ricketts, then an NHS regional director, advised that the removal should

be gradual to “avoid sudden lurches in figures”.

A third large category of excluded diagnostic tests are computerised

tomography (CT) scans and magnetic resonance imaging (MRI) scans, which can

be used to diagnose cancers, cardiovascular diseases and bone disorders.

Previously unpublished data from more than 30 trusts, obtained by The Sunday

Times, reveals long delays and huge regional variations for such scans.

At the Blackpool, Fylde and Wyre Hospitals NHS Trust there were 523 patients

waiting up to 14 months for a CT scan at the end of March and 1,753 patients

waiting up to 20 months for an MRI scan. But at Hillingdon Hospital NHS

Trust there were just 89 patients waiting a maximum 21 days for an MRI scan.

At South Devon Healthcare NHS Trust there were 227 patients waiting up to 18

months for angiograms on March 31. But the maximum wait at Bradford

Hospitals NHS Trust was five weeks.

Hospitals point out that urgent cases can be given priority. The health

department claims that because such scans may be for preventive purposes, or

show nothing wrong, it is not meaningful to include them in the published

waiting list figures. Try telling that to a patient who finds, via a delayed

scan, that his cancer has become inoperable.

BUT perhaps the most damning omission from the official lists is for

radiotherapy cancer treatment. Alan Milburn, the health secretary, has made

tackling cancer a priority. But hundreds of radiotherapy patients are on

hidden waiting lists of up to six months.

Some cancer centre managers complain that their “invisible” patients are

given lower priority because their treatment does not count towards official

waiting list targets. “We asked for in excess of Pounds 1m (for this

financial year). It was reduced to Pounds 650,000 and has now been reduced

again,” said Jo Yardley, general manager of Kent Oncology Centre in

Maidstone.

“The waits cause immense anxiety yet I have never reported on radiotherapy

waits for any (national) performance programme. It’s something that we have

been crying out for for years.”

Guidelines from the Royal College of Radiologists stipulate that breast

cancer patients should receive post-operative radiotherapy within a month.

But it is not uncommon for patients to suffer delays of up to three months -

a delay that appears on no published government waiting lists.

There are cases such as Joy Barthorpe, 72, of Battle, East Sussex, who was

diagnosed with breast cancer last October and had her operation on December

28. She has been told that her radiotherapy will not start until June 24.

Thomas Liston, 46, from west London, was put on a three-month wait for

radiotherapy for a brain tumour. His waiting time was reduced but he died

earlier this year before he received treatment.

These are not isolated incidents. The dangers of delay are reflected in a

report published in the British Medical Journal in January 2000. It said:

“Six weeks is the approximate volume doubling time for many tumours and

introducing an additional delay of four weeks between planning and starting

radiotherapy must prejudice outcomes.”

THEY are calling it Not The Waiting List. That is the title of a report that

the Association of Community Health Councils for England and Wales is

preparing to illustrate how many different types of waits are excluded from

government figures. Whether all of them should be part of published waiting

lists, or can be collected in practical terms, is debatable. What is clear

is that waits for certain diagnostic tests and treatment for some serious

illnesses are at present hidden from public scrutiny.

As Liam Fox, Tory health spokesman, said: “If you are interested in clinical

outcome, then one of the critical factors is access to diagnostics. The

horrendous delays in getting access may often mean that patients may die

before they get the treatment that they require.”

Hospital managers admit the disarray. Several, such as Plymouth Hospitals

NHS Trust, say they do not count angiograms, while several others, such as

the Newcastle upon Tyne Hospitals NHS Trust, say they do.

It creates a system that is both confusing and distorting, skewing managers’

attention away from life-threatening diseases to treatments for mundane

conditions that happen to reduce published waiting lists.

“When the money comes in, the chief executives want to put the money into

achieving the targets over which they will get sacked,” said Hilary Thomas,

professor of oncology at the Royal Surrey County hospital. That means

concentrating on published waiting lists.

“The public should know that one patient might be getting their varicose

veins surgery done to meet some silly target in a manifesto and another (who

does not appear on the waiting list) might not get radical treatment for

cancer and that may make a difference to whether they live to old age or

not.”

That, says Thomas, is “morally wrong”.