Stories Archives

Inconsistent care and support: The knock-on effects of not receiving the correct care (3:10)

The storyteller describes how a care support for her brother initially seemed good but wasn’t equipped to handle a person with high anxiety and autism, especially given his mix of high functioning and significant support needs.

Over about a year the staff became inconsistent, arriving late without calling and leaving early, despite repeated requests to keep a predictable schedule and provide the full four hours of support, leading to frequent meltdowns.

After one worker arrived late again and announced she would leave 40 minutes early, he insisted she stay and locked the door, which was treated as a “lock in.”

The care organisation called police, who broke down his door, even though the speaker emphasises he is not violent and only wanted his support worker to complete her shift

10 years in the care of MH services (4:26)

Nonnie describes their 10 years of MH services and support, changing GP serivces, 4 hospital stays, private, public and section 136.

Nonnie is very clear about what works for them, how beneficial the low stimulus environment of the institutions and how to make that work for them.

Where the power lies, with the care company or adult social care. (6:55)

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.

Glenn – Experiences of Homecare in Norfolk (4:35)

Glenn shares his experiences of living with Parkinsons “the gift that keeps on giving”, wanting to maintain his independence, and not wanting to accept help.

Glenn describes how the carers sometimes feel put out because he wants to do stuff for himself.

Glenn also describes how the decision to have care and support was right when it happens, alongsdie the challenges of having to adapt to different people coming into his home, and manage the uncertainty when people come in and find him ‘frozen’.

Glenn describes having to stay calm and confident and not get agitated when being supported. The gradual build of care has been good for Glenn, and the way this has been managed.

“Sometimes the carers come and say to me we havent done much, but I say you have helped me with what you have done, and not only that – the level of communication, I havent seen anybody all day and sometimes its quite isolating being by yuorself – being stuck in these 4 walls year in year out!”

Exploring the Gaps in Responsibility in Social Care: A Personal Story (2:35)

In this video, the speaker talks about the issues with the current social care system in the UK.

They share 18 months of experiences dealing with local councils and care companies, focusing on the problems that come from a system driven by profit rather than genuine care.

The speaker highlights how the system mixes up who should be held financially responsible with who should actually provide ethical support, arguing that major changes are needed so people receive proper care and dignity.

Experiences of Homecare in Norfolk (5:19)

James describes the excellent care his partner of 44 years recieved following a spinal chord injury. David died recently at home.

James describes the care David recieved as being like having friends in their home, and they would always let James and David know when carers were not able to visit.

James contrasts this against the care and support he recieved for himself. The difference in costs and standard of care.

James currently lives with advanced cancer. James talks about the impact of his financial situation on being able to afford the care and support he needs now.

When Home Care Falls Short: An Honest Account (8:33)

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.

10 years in MH services before getting autism diagnosis (8:42)

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”

Nonnie – most important things for the real care deal (2:23)

Treat everyone as a person regardless of what you call mental capacity.

Putting people at ease is important, be human with one another.

“Understanding peoples needs and barriers you can give them the right support”

Direct Voices: Including Lived Experiences in Service Design – Proper Coproduction (4:12)

This carer says the subcommittee made it clear that officials were warned a decade ago but did very little, apart from underfunding services, and this has led to real harm.

They argue that councils and health bodies – like Norfolk County Council and the ICB – must not redesign learning disability or autism services without properly involving people with disabilities, people with lived experience, and family members such as siblings and parents.

These people should help make decisions, not just be invited to share sad stories.

They call for real representation, not tokenism, and suggest a “30, 30, 30” mix to ensure balance.
They also say meetings need to be run properly: with clear agendas, written minutes, named people responsible for each action, deadlines, and real consequences if things aren’t done.

Without ownership and accountability, they say, nothing actually changes. This is a call for proper coproduction.