The speaker says efforts often stop at collecting information and then get pushed into long timelines of five to ten years, with no real change even after a decade, as they were told in Winterbourne.
They express anger that councils take so long to act and argue this is no longer acceptable, insisting changes should happen within weeks or months, not over several years.
This carer talks about her experiences of being carer for her mum, and the interactions with social care, care staff and the care provider.
She reflects on where the power lies, and how the provider can withdraw support at any time.
And the pain of being told she was confrontational when trying to get the best for her mum.
She talks openly about the impact of being a carer, while trying to ensure her mum has the best care at home.
This carer explains that the home care company looking after her mother caused lots of problems.
When the company took over her care, it changed the visit times to suit itself, didn’t communicate well, and made the family feel like they were being difficult.
The family still had to do most of the caring themselves, including helping her move, doing her physio, and making her meals.
The company also removed a stand aid without telling them, which made the mother’s health and dignity worse and led to problems like pressure sores. After a review meeting where everyone agreed to improve communication and decision making, the company phoned to say it had already decided to end the contract. This left the family with no replacement care in place.
The speaker says this shows how a profit driven care system can abandon people and leave families exhausted, while the only option offered is a care home the mother doesn’t want.
Jack shares their journey through MH and NHS system from age 18 – with anxiety, never addressing the root cause.
Jack finally age 27 met someone in MH services who really listened, and supported Jack to get a diagnosis to autism.
Jack talks about the difference someone picking this up earlier would have made not just for him, but aqlso the impact on the amount of time Jack spent in and around MH services.
Why it is hard to speak negatively about his experiences, because often it is framed as your fault, not ‘the system’, so its easier to not challenge people working in services.
Jack reminds us that the individuality in how people are supported is missed “Its about individuality which I think is so criminally missed I think in the way we offer support to people in many ways”
Jac and Baz relate to how for them humour creates the conditions for trust and transparency. Jac shares it took her a while to feel confident with male carers, Baz’s “warped sense of humour” has helped with this.
They have a strong bond between them and shared humour is what has got them through tough times. They share several examples of this.
They choose to make light of the difficulties they deal with each day, this is important to their well-being, it helps them survive. Humour and being silly is a passionate thing that brings them closer.
It is easier to do this when trust and transparency is present
Zena and Angela give an overview of Highwater House and Under One Roof.
Highwater House is a 22 bed residential care home for people with a mental health illness, and drug or alcohol addictions providing care for adults 18-65 who have experienced trauma.
It is a facility that focuses on working on the emotional needs of people who have and are suffering trauma through their experiences of homelessness rather than stopping people from using drink and drugs.
Supported by St Martins Housing Trust, Under One Roof is a day centre for people enduring long term mental illness and social isolation. Zena touches on how through daily mistreatment and long term abuse those who are living homeless have lost trust in humans, in society and how their work is about rebuilding trusting relationships.
Iris and Sue discuss some of the difficulties encountered with care companies. including issues with communication and lack of apologies or acknowledgment from the carers when problems arose.
The conversation emphasises the need for better direct communication and transparency between the care company, the carers, and the family members supporting the care.
The importance of building trust through better communication practices is highlighted.
Sue talks about good care being when someone gets what they need, when they need it, in the right way as promised.
This is in contrast to a lot of contradictory experiences where things have been promised that don’t materialise.
She stresses the need for care providers to be more human, understanding, and communicative and touches on the importance of trust and transparency in fulfilling care promises.
Sue sets the context of supporting her 88 year old mother and 95 year old father at home for nearly 3 years. Sue has an extensive background in care, including over 47 years as a learning disability nurse and experience in various care provisions.
Her parents care has evolved from half-hour daily care to full-time live-in care. Sue contrasts her professional expectations with her personal experiences, highlighting significant challenges and disappointments with care providers.
Despite her and her brother’s efforts for transparent relationships and high standards, they faced issues such as inadequate training, poor communication, and lack of respect for their parents’ needs, leading to frustration and additional workload in managing the care.
Iris and her daughter Sue reflect on how it feels when she is not asked what she would like, how it makes her feel uncomfortable describing it as though she is not living in her own home. They talk about how they raise problems with the care provider and intervene when care is not thought through.
They talk about whether care workers are aware of the effect this has, touching on what prevents carers from understanding the experience and perspective of the person being cared for. Iris shares experiences of food provided by care support has been poor being served cold, not enough or strange concoctions like soup instead of gravy around a meal, leaving her feel uncomfortable and not listened to.
Sue notes that is is important to ask how someone might like a meal cooked rather than just what you want to east bringing to light what we take for granted ourselves and what being dependent on care looks and feels like.
