Chronic pain sufferers: Civil servants tried to silence us
Chronic pain sufferers asked to speak on behalf of patients claim civil servants conspired with a patients’ organisation to ban them from speaking to each other.
They had been invited to sit on the National Advisory Committee on Chronic Pain launched to advise ministers on making NHS services more effective.
But emails, obtained under data protection legislation, suggest civil servants from the Scottish Government’s Clinical Priorities Unit warned they should not communicate outside of official meetings arranged and supervised by the Alliance, an organisation intended to be an independent channel between ministers and patients. One email, in May last year, was sent by a senior civil servant to the Alliance, saying: “On the call last week we discussed concerns that the reps were communicating with each other outside the scope of the meetings/forum arranged by the Alliance, so it would be appreciated if this expectation is again communicated and made clear to the rep group when they meet.”
The Alliance replied: “Reps groups are not to meet independently of The Alliance, so this will be raised this morning with them.”
Dorothy-grace Elder, founder of the independent cross-party group on chronic pain, said the emails demonstrate an attempt by the government to control committee members’ contacts with one another. She said: “These patient reps give their free time to ensure NHS services are the best they can be for others. Despite their own ill-health they sat on this committee, which is closed to the public and is filled with health board officials and civil servants.
“Patient voices were asked for, but it became clear with these emails that government officials did not want those patient voices being heard and the committee was closed down after two meetings.”
Now patients are demanding an investigation is carried out by the Standards Procedures and Public Appointments Committee.
Ian Semmons of Action on Pain, who also sits on the cross-party group on chronic pain, said: “These emails clearly suggest that instead of listening to patients, officials are trying to control the debate.
“I’ve been a campaigner for over 25 years. I’ve sat on patient committees across the UK and Europe to ensure chronic pain services are the best they can be, and I have never encountered such behaviour.
“It’s astonishing that in the middle of the pandemic when so many lives were lost, health officials felt they had time to focus on this.”
Liz Barrie, from Lanarkshire, said: “Despite suffering chronic pain following a back injury, I’ve participated in a government committee which claimed it wanted to improve the dire service given to sufferers because of a shortage of resources and staff. We do it because we care.
“I feel like we have been used and manipulated. I despair. This government have duped patients into thinking their voice matters when clearly it does not.”
MSP Miles Briggs, one of three politicians acting as conveners of the crossparty group, said: “This is a very serious matter, something the Standards Procedures and Public Appointments Committee should investigate.”
The Scottish Government denies the email flagging “concerns that the reps were communicating with each other outside the scope of the meetings” means there were concerns about them communicating outside of the meetings, while The Alliance, which was established to give patients a louder voice, denies taking orders from civil servants.
The Alliance denied civil servants influenced how patient groups met. Director of strategy and engagement, Irene Oldfather, a former Labour MSP, said: “The Alliance seeks to support people with lived experience to participate and contribute to the patient voice. This ensures services and policy are designed with people and not for them. The publication of the recent framework for pain management service delivery demonstrates the success of that approach. The Alliance would not be subject to instruction from government officials. From our perspective, peer support is a very valid mechanism that people with long-term conditions often cite as helpful.”
The Scottish Government said: “Scottish Government officials did not request restrictions on the meeting of members outside of the National Advisory Committee on Chronic Pain, only that it should again be made clear that members were expected to engage constructively with important work. All committee members are – quite rightly – free to make whatever contribution they wish to discussions, both within the committee and outside of it.”