Good Employment and Business Practice Archives

Advocating for Autism within hospital care (11:37)

The story teller describes their autistic brother’s stressful A&E and two-month hospital stay, where noise, lights, and crowds triggered meltdowns and staff initially lacked autism awareness.

After advocacy, he was placed in a dark, quiet side room with controllable light and sound, which stabilized him, and staff learned to make reasonable adjustments (including limiting the number of clinicians during rounds). Learning disability nurses helped but were unavailable overnight, leading to more problems.

Discharge was delayed because no rehab facility would accept him due to perceived “aggressive” behavior and understaffing.

Her brother had to self-discharged home with OT adaptations and short-term family support.

Stories need to lead to inclusive decision making (1:21)

The storyteller argues that councils should not restructure services for people with learning disabilities or autism without including people with disabilities and lived experience on committees and in decision-making and service creation.

While they applaud efforts to bring personal stories (often tragic) to decision makers, they insist this should not be the end point; meaningful inclusion needs to extend to designing the services themselves.

They compare it to cancer treatment, saying it would be unreasonable to build such a service without involving people who have cancer, and call it nonsense to rely on stories and then exclude disabled people from the decision making process

An event I wasn’t expecting to be part of! (5:53)

Jack talks about the human to human contact, and being able to have conversations with people that he has never been able to have before.

Jack came away feeling that he had had many conversations that day where he felt listened to, and not having had to fit someone else’s agenda.

Jack wanted to support peoples understanding of autism on the day, most memorably was a conversations about the low numbers of people with autism in the workplace, the barriers and for those people to openly admit they need help to change things and make the workplace more accessible for people with autism.

Kyle – when things start to change… (3:02)

Kyle talks about the difference that working on the real care deal made for him, and the improved connection with the managers of the care agency.

This experience however is still mixed, keep connected to the real care deal to hear more from Kyle…

Most important thing for the real care deal (1:32)

Kyle would like to see the manager regularly to catch up.

For them to be more on board, not leave decisions to late.

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

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.

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.