Spectrum 10K: NHS Trust paused involvement in autism study following staff ‘anxieties’, email reveals

Email correspondence obtained under the Freedom of Information Act has revealed another NHS Trust with concerns over the Spectrum 10K study, with staff at Leicester Partnership NHS Trust (LPT) having “anxieties” about the controversial project.

The message, from the Trust’s interim lead for research and development Dave Clarke, was sent in September last year after the Trust had a site information visit (SIV) from Spectrum 10K the week before.

Mr Clarke referenced the “apprehension and anxiety” from “parts of the autistic community” around the Spectrum 10K study, adding that these sentiments have “inevitably been picked up by some of our clinical staff”.

“[They] have expressed some concern about our potential involvement, and the impact on their relationship with patients as a result. We heavily rely on such clinical staff to help us identify potential participants across all of our research studies, so need to maintain a positive relationship with them, and wish to ensure that this is in place for Spectrum 10K to maximise our potential contribution to this important work.

“The assurances given during the SIV dealt with the substance of these anxieties to ourselves, as the research team (thank you), but it would be unwise to push ahead and ignore our clinical staff’s concerns and anxieties without addressing them,” he said.

Mr Clarke went on to add LPT hoped to run at least two additional autism studies over “the next few months”, meaning they had to ensure support for these projects by those within these services “is not compromised”.

He continued: “We met for a debrief after the SIV to discuss the best way forward to manage this situation, and have decided on a brief pause before launch, whilst we speak with our clinical staff, as to the true extent of this anxiety, and as to the best way to provide assurance to them and answer any questions they, patients, families and carers may have.

“This may include of course, materials and statements that Spectrum 10K are developing (or may indeed, have already released) as a result of the negative media.

“We have an excellent track record of recruitment with all studies as a Trust, and want to ensure we give Spectrum 10K the best chance at successful recruitment in Leicester.

“Our local Principal Investigator, Dr Biswas, remains supportive and will contribute to this assurance. We are conscious that at the moment, trying to recruit whilst patients and staff are expressing their current levels of anxiety may be counter-productive, and hope that with assurance, we will be in a better, calmer place to begin successfully recruiting to Spectrum 10K in the very near future.”

He concluded the email by saying the decision would be reviewed “within four weeks”.

However, when approached by Liam O’Dell for comment on Friday, an LPT spokesperson said the Trust’s position on Spectrum 10K “has not changed”.

Asked if this meant the concerns of clinical staff had been resolved, another spokesperson replied: “No, that is not correct, the position of LPT has not changed.”

LPT isn’t the first NHS Trust to pass on concerns about the study to Spectrum 10K, as Sussex Partnership NHS Foundation Trust withdrew their involvement following feedback from “a number of experts by experience”.

The Clinical Research Team Leader at the Trust wrote: “I had enquired about whether there were concerns raised that could be addressed by your study team, however, they have said that the feedback is categorical. As such, we are sadly going to have to take the decision not to proceed with the study at SPFT.”

Elsewhere, Pennine Care NHS Foundation Trust and Royal Wolverhampton NHS Trust both passed on concerns about the autism DNA study, only for Spectrum 10K researchers to recommend they “do not engage with trolls targeting Spectrum 10K on Twitter.”

Responding to a request for comment about the Royal Wolverhampton email, a Spectrum 10K spokesperson said: “An email was written after somebody who was not a part of the core team reported ‘being trolled’ after receiving abuse on Twitter, and regrettably their language was echoed in this email.”

The team declined to comment about the Pennine Care email, as the press request was sent after the team said they “cannot continue to respond” to this website’s enquiries.

While no payment is expected or necessary to access this content, if you would like to support Liam’s independent journalism, you can send a tip via CashApp.

You can also sign up to Liam’s newsletter, where he will share updates on his first non-fiction book which is due to explore the subject of autism research in detail.

This report is the latest in his series ‘The Spectrum 10K Files’. Read the previous articles online now.

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