Scotland's health data body rebuked over way data on waiting times was presented

It was concerned figures given by the Information Services Division (ISD) did not give a full picture of the scale of the problem and that patients returning for treatment, as well as first time patients, had to endure long waits.

The issue was first highlighted by the Herald in March when it found ISD figures required detailed analysis to show the impact on patients.

It reported that between July and September last year, the data showed there were 5,235 new referrals. Of these new patients, 2,667 were seen by a clinician, but only 1,610 of them actually started treatment within the 18-week target time - a compliance rate of about 30 per cent. However, the true scale of the delays was worse still, as an additional 4,879 patients left over from the previous quarter - still unseen and untreated – were not included in the statistics. Added to the 5,235, this gives a total of 10,114 new patients and a compliance rate of 15.9 per cent.

Ed Humpherson, director general at the Office for Statistics Regulation, criticised ISD saying decisions made by them had “reduced the statistics’ usefulness”.

“These statistics are important,” he said in his letter sent earlier this week to the journalist Dorothy Grace Elder, a member of the CPG and who made the complaint on its behalf.

“They should shine a light on the waiting time experience of those needing to access chronic pain health services in Scotland.

“The time waiting to access these services is particularly significant given the nature of chronic pain and the impact on those who live with it.”

He continued: “I have concluded that ISD h

He continued: “I have concluded that ISD have made a series of misjudged decisions on the commentary and coverage of these statistics. These decisions have reduced the usefulness and accessibility of the statistics for users.”

He did not believe the presentation of the data was directly “politically motivated” but suggested the data had been presented in a way to assist policy makers and did not take account of the other groups.

He added: “I also consider that ISD should continue to look into the case for the inclusion of data on return patients.

“ISD has not been transparent on what it plans for these statistics, which is important as these statistics are still in development, and has not communicated well with the users who have asked for return patient information to be included.”

Humpherson indicated he would meet with Scottish Government civil servants to see how public confidence in health statistics could be improved.

He recommended that ISD should ensure its work is transparent, engages with a wide set of users and accurately and clearly describes what its reports contain.

Miles Briggs, the Conservative health spokesman, said: “I welcome the fact that the UK Statistics Regulator has backed up the serious issues raised by Dorothy-Grace Elder in her complaint and confirmed that IISD made a series of misjudged decisions on the commentary and coverage of these statistics. The Scottish Government and ISD need to reflect very carefully on this significant ruling from the Regulator and respond accordingly

and without delay.”

Alex Neil, former SNP health secretary , also supported the complaint.

He said: “The cross party group complaint has been upheld. That is evident, even with civil service language.

“There is a clear impression that ISD needs to get their act together and be much more open, transparent and honest in their reports.

“It is clear that they are going to be watched more closely from now on by the regulator as well as by the cross party group and Parliament.”

Patients referred to pain clinics suffer from a range of different, often incurable, conditions. They include people who have suffered spinal damage through road traffic accidents and others diagnosed with severe arthritis, cancer, multiple sclerosis and Parkinson’s. They are given help to manage their discomfort at specialist pain clinics.

ISD handles Scottish health statistics, providing information, intelligence a

and statistical services and advice that support the NHS in its policy making and services planning.

A spokeswoman for NHS National Services Scotland said last night: “Information Services Division notes the issues raised by the UK Statistics Authority and will be making a full response shortly.”

A Scottish Government spokesman said: “There is no basis whatsoever to these suggestions – as confirmed by the Office for Statistics Regulation. ISD amended publication summaries of chronic pain statistics following patient feedback, not because of any government involvement.”

COMMENT - DOROTHY GRACE-ELDER

“YOU could not allow an animal to suffer as I do” is the most common remark from those with chronic pain. It destroys work, families and drives too many to suicide.

It is therefore heartbreaking for patients that the email trail obtained under Freedom of Information (FoI) shows that Scottish Government officials told the Information Services Division (ISD) that “they are not interested in the pain psychology service and they would be quite happy if the pain psychology service information was reduced in the Summary to one bullet point or even removed altogether”

The ISD, which is meant to be independent, then cut to “one bullet point,” as requested.

Government official Colin Urquhart emailed ISD directly, telling them they did not want return patient statistics published. ISD agreed.

These emails are alarming within any democracy.

Is nothing taught to Government officials or statisticians about human suffering beyond figures on excel sheets?

John Thomson, a Glasgow pain sufferer, commented: “This is shocking. It was a pain psychologist who saved me when constant pain made my life not worth living. I was on the brink of suicide. To see the work of such caring doctors dismissed by [someone] who may know nothing about it is disgraceful”

The officials involved work with public health minister Aileen Campbell.

I’ve been involved with long term pain patients since setting up the voluntary cross-party group 16 years ago. These patients are shoved around relentlessly. Because they do not have a huge charity behind them such as diabetes and cancer charities, they are more vulnerable.

ISD is the leading health statistics body costing NHS Scotland £26 million a year and it employs 616 staff.

The big problem is that, without full facts, Governments can drag heels on any issue.

But full facts demand that return patients using the same short-staffed pain clinics as new patients must be counted. They can be many thousands. And they would make waiting times – already very bad for new patients – show up as much worse.

But Government embarrassment is not the point, as MSPs from all parties have pointed out. Staff the clinics is the answer.

A cover up is not the answer. Alison Riddoch, 46, is a Moray “return patient”under NHS Grampian, which is very short staffed and regularly cancels appointments.

She needs injections every six months but waited 15 months one time and currently had her last treatment nine months back, “Sometimes you don’t want to live any more” she says. “The nerve pain is excruciating. But knowing that you aren’t even counted means we’re hidden and won’t get help”

The mother of two was involved in a car accident eleven years ago.