York St John academic leads call to action in Parliament
Published: 21 November 2023
MPs, charities and families have attending a film screening in Parliament with a call to action to improve the lives of people with severe mental illness and their carers.
The documentary 'Pip, Pop and a Pandemic' was made by Tracy Willits, Senior Lecturer in Media Production at York St John University. Tracy has a background in health documentaries for television and in this latest work, she gives a voice to people with schizophrenia and their carers.
The film follows two couples through the COVID 19 lockdown and shows how their lives in North East England were turned upside down by a mental health crisis and global pandemic. It was filmed over an 18 month period, with filming and editing support from Alex Crowton, Senior Lecturer in Media Production at York St John University, and Matt Dennis from Teesside University.
The film shows:
- Pauline and George who both have schizophrenia. They are seen navigating new love in later life alongside a battle for mental health support during lockdown.
- Ed who was a successful 80s musician and used to a glamorous touring lifestyle. He features in the film anonymously as he gives his own unfiltered account of now living in poverty while he cares for his wife.
The resulting ‘powerful and distressing’ documentary is a unique insight into the immensely challenging situations of vulnerable people trying to survive through lockdown. It has been submitted as evidence to the COVID 19 inquiry and is supported by major mental health charities.
The private viewing at UK Parliament took place on Monday 20 November 2023 supported by York Central MP Rachael Maskell.
It was for an invited audience of MPs, charities and families, and was followed by a panel discussion and a call to action proposing changes in how society supports people like Pauline and Ed. The panel included representatives from MIND, Rethink Mental Illness, the Royal College of Psychiatrists and the Centre for Mental Health.
People with lived experience of schizophrenia bravely speak out about how an inflexible benefit system is resulting in carers and their loved ones living in poverty; and how an inequality of health care means that those with serious mental health conditions are failing to get the help that they desperately need.
Set against the beautiful backdrop of the Northumberland coast the film is raw and emotional and ultimately tragic, but with two love stories at its heart is told with both humour and warmth.
PIP - Pauline and George’s story
Pauline was diagnosed with severe schizophrenia at the age of 14. Now she’s getting engaged to George - a day she thought would never come after spending most of her life in institutions. George too has schizophrenia.
Thanks to her medication Pauline can now live independently but her whole future is put in jeopardy when an application for PIP (Personal Independence Payment) is refused, forcing Pauline to live off her savings.
Pop - Ed and Catarina’s story
80s pop musician Ed cares for wife - life is difficult but he will never leave Catarina fearing she would end up living on the streets.
Guitarist Ed admits looking after someone with schizophrenia can be challenging when Catarina walks down the road at night looking in a mirror or dances naked for strangers on the internet. Despite living in the country for over 20 years Catarina from Croatia has never legally applied to be in the country and receives no benefits. Living in poverty the couple rely on food banks and handouts from Ed’s elderly parents.
And a Pandemic
Halfway through filming, the pandemic strikes and during lockdown Tracy keeps in touch via skype calls.
Carer Ed finds the pandemic stressful and confesses to an increased dependency on alcohol.
A rise in anti-social behaviour leads to Catarina being targeted by a group of local youths.
Pauline is classed as vulnerable and moves back in with her parents, she rigidly sticks to the rules but the stress of being separated from George causes her voices to increase at night.
When regulations allow six people to meet up in person, Pauline and George see each other face to face for the first time in 12 weeks on Pauline’s 57th birthday (exactly one year after they got engaged). They meet at Tynemouth Metro station where the couple kiss and cuddle with their masks on.
Then 16 months after her initial interview and due to a late-stage cancer diagnosis Pauline is finally awarded PIP but dies 4 months later aged 57. George soon follows, after a heart attack at 66, backing up research that says people with serious mental health conditions have shorter lifespans by about 15 to 20 years.
Support for the film
Tracy Willits, filmmaker and Senior Lecturer at York St John University said: “Making this documentary has been a real eye-opener for me as well as for an audience. I knew our mental health care system was suffering from a lack of funding but through Ed and Pauline’s personal stories, I now realise we are in crisis.
“In a Call to Action, I will be asking parliamentarians to commit to reducing the large gap in life expectancy for people with a serious mental illness who tend to die 15 to 20 years younger than the general population - a statistic which tragically comes true in this documentary. Pauline passed away during filming after a late-stage cancer diagnosis and just four months after finally being awarded PIP. Her fiancé George soon follows dying of a heart attack in January this year.”
“I am also calling for a change to the punitive culture within the benefits system and a more compassionate approach towards people with disabilities and their carers. I will be asking MPs to listen carefully to what Pauline and Ed have to say on behalf of the millions of people with mental illness in this country and their carers, and to change the current system to one that truly supports the vulnerable living on the fringe of society.
“MPs are fortunate in that they have the power to do something and they must act now before it’s too late. This is especially important with the announcement of plans to get more people off disability benefits and back into work. In terms of mental illness, a forceful approach could put vulnerable people at serious risk.”
Rachael Maskell , MP for York Central said: “I am really grateful to Tracy for producing such a powerful film, giving an important and rare insight into the impact of schizophrenia on individuals and their loved ones and carers.
“Sadly, the truth is that as a society we continue to fall way short when it comes to caring for those with the condition, with many being vulnerable and marginalised, and access to mental health support woefully inadequate.
“The shocking reality is that people with severe psychiatric conditions die up to 20 years sooner than the general population. The stark inequalities in access to health and well-being, benefit services and housing to name but a few, is a crisis that needs to be brought to the fore.
“By bringing this screening and discussion to Parliament, I hope that it will give space for MPs and Charities to come together to reflect on the lived experience of people with schizophrenia and crucially, to renew focus as to how we make services fit for the future.”
Andy Bell, chief executive at Centre for Mental Health, said: “Pip, Pop and a Pandemic powerfully illustrates the reality of living with a severe mental illness and how too many people are left without the right support to live, work and make ends meet.
“The documentary shows how the punitive and discriminatory nature of disability benefit assessments can harm people living with severe mental illness. It’s unjust that people with a severe mental illness have a life expectancy 15 to 20 years shorter than average.
“It’s critical that the Government acts now. It must reform the benefits system to ensure people with a mental illness are treated fairly throughout. It must take action to close the life expectancy gap. And it must ensure mental health support is there when and where people need it.”
Glyn Middleton, former Head of Skills & Industry Engagement, Screen Yorkshire said: "Tracy Willits' documentary, Pip, Pop and a Pandemic is a powerful and distressing film providing a rare insight into the nature and impact of schizophrenia - and mental illness more widely - in two northern families. Filmed before and during the pandemic, it demonstrates how the effect of the Covid lockdowns was even greater for the most vulnerable in society".
Thoughts from family members
Ed – Catarina’s carer (anonymous)
“I took part in the documentary as I wanted to help other people with mental health problems and their carers. I’m grateful for the chance to tell my story as unpaid carers don’t usually get the chance to be heard. I wanted to show the difficulties of caring for someone with a mental illness – it’s 24 hours a day and you get a bit of sleep when you can. My wife has schizophrenia and is unable to work because she doesn’t get on with people. She lives in her own bubble with her poetry, art and the internet. I can’t work either because I have to look after her. I hope the right people see the film and it helps others in the same situation.”
Ed’s Mother (anonymous)
"We’re grateful to have the chance to have our say. I hope the film helps all the people who are unfortunate enough to have this illness. It will also help the ordinary person on the street to understand what it’s like to have a mental illness and that it can happen to anyone. Then if anyone comes across as a little bit strange to them, they’ll have empathy with them and think that there’s a reason why they are acting that way and not be so judgmental.
“I think the government could provide more help for unpaid carers and have an appreciation of what they have to do. Carers are forgotten about. It’s not just the person who has the condition that’s affected, it affects the other members of the family too. I hope that through this film things will improve.”
Pauline’s brother Garry
“I think the film is a great legacy for her because Pauline is being seen and heard already two years after her death. Her voice about how she felt about her condition is still having an impact on people and I think that’s very important, and that Pauline would be pleased about that if she knew and George too.
“It would be good if Pauline’s story could have an impact on how people with serious mental health problems are treated in society. I think at one point in the film she says they’re treated less than human which is an awful thing to have to hear but that’s how she felt. I think if people were treated with more humanity not just by the government or the care system or the NHS but by the wider society, that would be a great legacy for Pauline.”
The film is an official selection for the Canberra International Mental Health Film Festival 2023.
There will be a public screening at York St John University in January.