RxISK is also running a Freeing Teresa post today..
Samizdat is co-publishing Freeing Teresa with Franke and Bill James. It’s a true story about Franke’s battle to protect her younger sister, Teresa, who has Down syndrome. Ten years ago, based on incorrect health information, Teresa lost her right to decide where to live. Then, she was put involuntarily into long-term care. This was a terrible mistake. The book tells the story of how it happened and how the two sisters stood together against their family, the medical system, and even the police to defend Teresa’s right to be free.
Franke’s sister, Teresa, was born with Down Syndrome, the seventh of seven children. At the time, in the early 1960s, the conventional medical advice was Teresa should be institutionalized. But her parents decided to keep Teresa at home and raise her with the rest of the family, just as they were doing with their other children. Teresa had a good life, living at home, going to school, and growing up in the community.
Forty-nine years later, a crisis arose. Teresa’s mother had died, but Teresa was still living happily with her father. His long-term plan for Teresa was that she would move in with her brother, who had promised to take her. But that brother was having second thoughts, so some of the other sisters came up with an alternate plan. They decided that Teresa should be put into a nursing home—government-funded long-term care.
Franke immediately objected, saying that Teresa was young and healthy. (The picture below is from the day she regained her freedom). She had no need for this type of medical treatment.
However, today, it is commonly accepted in the medical community that people with Down syndrome are prone to early-onset Alzheimer’s Disease. Knowing this, some other siblings started worrying and talking about Teresa’s “strange behaviour.” Then, they had Teresa assessed by a care agency social worker. After meeting Teresa and listening to the stories of her siblings, he concluded Teresa was suffering from rapid cognitive decline. This was not an accurate assessment at all because it was based on false information, and it has been proven wrong by the fact that Teresa has lived for ten years in the community since then. But it had a devastating effect on Teresa’s life. He determined that Teresa was “not capable.” Teresa lost her right to decide where she lived.
Franke did not know about the assessment, but she did not believe the strange stories about Teresa, and she continued to object. The others just dismissed her, assuming Franke was too busy with her career as an environmental activist to do anything about it. But as things continued to escalate, Franke offered to take Teresa into her home in an effort to stop the plan. But the siblings, who said they had all decision-making power and were acting as Teresa’s legal “guardians,” rejected Franke’s offer. A few days later, they secretly took Teresa and had her put into a nursing home.
Franke was in shock. And so was Teresa. The siblings did not tell her what they were doing until it was actually happening. But four days later, Franke and she secured Teresa’s discharge from Long-term care and brought her back home. That’s when the siblings called the police, and things got worse – picture of Bill answering the doorbell to the police below. Fortunately, Franke and Teresa were able to stand together, and they have stayed together, living in the community for ten years.
Franke, Teresa and Bill have a lot of support in the disability community, but we want to share this story with a wider setting. The facts of the story will resonate with people dealing with mental illness, dementia, and elder care.
and a link to Samizdat
In 2019, Teresa won a Human Rights Award – she has her own site here Teresa Heartchild. with its message Human Rights Should be for Everyone.
I followed Billiam James for years, and when he introduced us to Teresa Pocock, as she was then, it was a heart-breaking tale. What a talented family of three, Franke and Bill and Teresa Heartchild.
What a battle and what a fight to save Teresa from being institutionalised, none of her mesmerizing artistic talents to be revealed either to herself or to anyone else.
It just goes to show that with Human Rights on their side and a great deal of activism how such appalling wrongs can be put right.
Teresa is a joy to behold, her face lit up with the ecstatic revelation that she is now fulfilling her dreams, in what must have been pure devastation and confusion, to be locked away by a hostile world that deceived her.
Butterflies in My Stomach
https://www.billiamjames.com/
‘Pretty Amazing’ …
To her credit, the author never tries to demonize her now-estranged siblings, who come across as decent human beings trying to do he right thing in a situation where there does not seem to be any good alternative.
The elephant in the room here is a care system that has very little to do with actual caring for actual human beings. What if we took ninety-five percent of the money we spend on polydrugging nursing home patients and used it to hire more attendants and pay them more? Would placing a loved one in a nursing home still seem like such a dire course of action?
Here is Teresa’s 60-second StoryHive pitch:
“at age 49, Teresa was written off as “incapable” and was forced into a old-age nursing home in Ontario.”
“apology from the government”
Hi, I am Teresa Pocock and this is my story
https://www.billiamjames.com/butterflies-in-my-stomach/
Butterflies in My Stomach: Synopsis
This is the true story of Teresa Pocock, a woman with Down syndrome who has overcome discrimination and her own fears, to blossom into an award-winning artist and author. Four years ago, at age 49, Teresa was written off as “incapable” and was forced into a old-age nursing home in Ontario. Teresa did not want to live there. Her father and a sister rescued her, and Teresa moved across the country to B.C. to start a new life. “Butterflies in My Stomach” will tell her remarkable journey: How 26,000 people on Change.org, as well as civil rights organizations, and the media, helped Teresa get an apology from the government. And how Teresa’s new community in Vancouver, helped her to have confidence and emerge as a professional artist and a self-advocate.
“ studies suggest one in 10 older people’s admissions to hospital is linked to their medicine intake, with the majority of these thought to be avoidable with better care and support.”
NHS experts band together to tackle ‘chemical cosh’ in care homes
An ‘army’ of health experts has been recruited by NHS England to help prevent care home residents being given too many medicines as charities voice fears that a generation of older people is being subjected to a ‘chemical cosh’.
The initiative is part of a package of measures to improve older people’s health and care in the NHS Long Term Plan.
The NHS is putting in place medical and clinical experts, including 200 new clinical pharmacists and pharmacy technicians, who will support care home residents to improve quality of life, cut hospital stays and reduce over-medication.
Care home residents are prescribed an average of seven medicines a day, with many taking 10 or more, costing the NHS an estimated £250 million each year.
The experts are working as part of a £20 million programme to reduce unnecessary medication of patients, to make sure that they are getting the right treatment that is being rolled out across the country.
The additional staff is being brought in alongside the national roll-out of a programme in the NHS Long Term Plan – already in place in 14 parts of the country – giving everyone living in a care home improved GP support and more visits from specialists like dieticians and clinical pharmacists.
Around 400,000 people live in England’s 17,000 nursing and residential care homes. One in seven residents is aged 85 or over.
Elderly residents in particular often have one or more long-term health conditions – for example dementia, high blood pressure, diabetes and heart disease.
They spend around two million days in hospital each year and account for about 250,000 emergency hospital admissions. Some 35%-40% of these admissions are thought to be avoidable through action such as tackling over medication.
The new programme will also help to reduce the number of visits to A&E caused by older patients’ medicine use – studies suggest one in 10 older people’s admissions to hospital is linked to their medicine intake, with the majority of these thought to be avoidable with better care and support.
Failing to understand properly residents’ care needs can mean health problems get missed, which among older people risks frailty and falls, leading to long-term problems and lengthy hospital stays.
Professor Alistair Burns, National Clinical Director for Dementia and Older People’s Mental Health at NHS England, said: “Older people deserve the best possible support and with many care home residents living with complex conditions, bringing in extra expert health advice will mean the NHS can reduce avoidable drug use, improve care and free up vital funding for better treatment.
“People want to know their mum or grandad is being properly looked after and helping them to live well and with the best possible quality of life is key to that.
“Strengthening the ties between GPs and care homes made a huge difference to residents’ health when we tested the scheme and the NHS Long Term Plan will mean older people in every part of the country soon will benefit from tailored, specialist support in their care home.”
NHS England’s Chief Pharmaceutical Officer Keith Ridge said: “Rather than assuming there’s a pill for every ill, increasing the availability of specialist health advice in care homes will mean residents get more personalised treatment, reduced chances of being admitted to hospital and people will have a better quality of life, for longer.”