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'This must never happen again': Ipswich disability campaigner's fight reaches Parliament

Ivan Ambrose, who developed PTSD from the pandemic's constantly changing rules and has not left his house since the pandemic, saw his campaign for autism-friendly emergency support debated at Westminster on Tuesday, 2 December, after nearly five years of tireless advocacy.

Ivan Ambrose with his mum, Jayne, at home in Ipswich
Ivan Ambrose with his mum, Jayne, at their home in Ipswich
(Elouise LavingtonIpswich.co.uk)

Why it matters: The debate marks the furthest progress in Ivan's campaign to ensure autistic people receive proper support during future pandemics, following years of what he describes as being dismissed by former Ipswich MP Tom Hunt.

The big picture: Current Ipswich MP Jack Abbott secured the parliamentary debate after Ivan spent four and a half years campaigning for autism-appropriate information during health crises. The 41-year-old was left traumatised by the pandemic's relentless stream of information delivered in formats unsuitable for autistic people.

"Constantly changing rules left Ivan confused and distressed," Abbott told Parliament. "He was left extremely anxious by rules which were revised on a daily – and sometimes even hourly – basis. The mass bombardment of information in completely unsuitable formats left him overwhelmed and debilitated."

Ivan's parents could not have the television on around him during lockdown, as he was unable to deal with the relentless stream of pandemic information. "To this day, the TV stays off," Abbott said.

What they're saying: "I felt this was an incredibly important issue to raise in Parliament," Abbott said. "The pandemic had a devastating effect on so many people, but for autistic, neurodivergent, and vulnerable people, the lasting impacts were severe because of the previous Conservative Government's gross negligence.

"This must never happen again, so I urged our Government and all future Governments to properly prepare and offer far greater support to the most vulnerable in our society should another pandemic ever occur."

Abbott paid tribute to Ivan's determination: "Despite the immense challenges he has to live with, [he] has campaigned tirelessly, raising awareness, launching petitions, and providing evidence to Parliament. His courage and determination seeks to ensure that his personal tragedy is never repeated, so others do not have to suffer as he has."

The details: In his speech, Abbott detailed what he describes as the Conservative Government's failures during the pandemic, citing findings from the UK Covid-19 Inquiry's Module 2 report.

The Minister for Disabled People and the Disability Unit played no direct role in the Government's initial strategy from January to March 2020. Neither had any part in discussions about whether to implement a lockdown or how that decision might be mitigated.

It was not until 21 May 2020 – two months after the country went into lockdown – that the position of disabled people was considered at an inter-ministerial level.

"Disabled people were an afterthought," Abbott told Parliament. "Their needs and how the Government response might impact them were not considered. Ivan – and thousands of other autistic and neurodivergent people across the country – bear the consequences of that negligence today."

Abbott highlighted particularly concerning statistics from a National Autistic Society survey conducted between June and July 2020. Autistic people were seven times more likely to be lonely, six times more likely to have low life satisfaction, and nine in ten worried about their mental health during lockdown.

The journey: Ivan's campaign began after the second lockdown, when he was not allowed to invite anyone home, not even his favourite aunt, while pubs and restaurants reopened for others.

In February 2021, his parents sent a letter to then-Prime Minister Boris Johnson describing their son's struggles and pleading for help. They received a response 13 months later.

"It is not lost on me that illegal parties were likely taking place in Number 10 at the time the Ambroses' letter arrived," Abbott said.

Ivan launched an online petition in 2022 calling for autistic people's needs to be met in future pandemic responses. Despite failing to get the required 10,000 signatures for a Government response, he persisted.

His campaign gained momentum when he was asked to submit evidence to the House of Lords Select Committee on the Autism Act. His evidence now features in the committee report.

For context: The Government is currently looking at the UK's pandemic preparedness and recently concluded Exercise Pegasus, a pandemic simulation exercise. One of the core objectives was exploring the impact of inequalities and their consideration within pandemic decision-making.

Abbott said he looked forward to seeing the results of that work and urged the Government to ensure vulnerable people, including autistic people, are front and centre of the Pandemic Response Plan.

The bottom line: "We should all be inspired and proud of Ivan, but I also know that warm words and thanks are not enough," Abbott said. "There must be lasting and permanent change so this will never happen again."

After nearly five years of campaigning from his home, where he remains housebound, Ivan Ambrose has forced Westminster to confront how the pandemic failed autistic and neurodivergent people – and to consider how future governments can do better.

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