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

10 years in MH services before getting autism diagnosis

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”

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

Direct Voices: Including Lived Experiences in Service Design - Proper Coproduction

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.

Andrew who is Autistic, discusses his 20 year career at the Great Yarmouth Library (9:07)

Andrew who is Autistic, discusses his 20 year career at the Great Yarmouth Library

Andrew a longtime library employee discusses his 20-year career and explains how the job’s daily variation and his involvement in diverse tasks keep him engaged.

Following his autism diagnosis in 2014, he has received good support from his current team and manager, including the implementation of a personalised wellness plan. Andrew shares insights on how to support autistic colleagues, emphasising the importance of individualised approaches, clear communication, and flexible support systems.

He also reflects on the library’s evolution from a traditional book-lending facility to a vibrant community hub offering various services from mental health support to migrating assistance and warm drinks for those in need. The library continues to adapt, with ongoing programs like the summer reading challenge for children.

Underlying causes of poor care (2:40)

Underlying causes of poor care

Sue talks about what she are the challenges of providing effective homecare services and underlying causes. Relating to her own experience as a manager with significant experience overseeing services Sue feels that some issues stem from laziness, inadequate education/training and very over burdened care providers.

She gives examples of her parents experience having carer’s dash in and out with only 30 minutes to cover basic needs before rushing off leaving her parents frazelled. Sue emphasises the importance of human interaction critiquing the system for prioritising effeciency over quality.

Less agro and better pay working in a Supermarket (0:36)

Less agro and better pay working in a Supermarket

Jac relates they had many care staff on low pay often having to do extra jobs, leave to work at Tesco and Sainsbury it is better pay and much less agro.

Jac and Baz talk about the impact under investment has on care (2:41)

Jac and Baz talk about the impact under investment has on care

Jac and Baz talk about how the care system and staff are overworked, under pressure and don’t have enough time to give good care or enough staff to do so.

They talk about their experience of one care home Jac went into not having a nurse on site as promised, but a nurse on call instead and how this made them feel, with Baz feeling he let Jac down or she would not have medical attention when required.

They feel that some care homes focus on getting the ‘bodies’ in to make money. This is made worse by in some cases not having the right staff, staff doing things they are not qualified to do and general lack of care staff. They feel much more focus on investment is needed rather than financial turnover.

Conditions that create non human ways of working (1:49)

Conditions that create non human ways of working

Jac and Baz reflect that staff being over worked, not having enough time, lack of education/traing of how we should treat each other are all part of the conditions that create and environment which make it harder/stop people from being more human with each other.

What is needed is a social care system that values individual as somebody that counts, has an opinion, has feelings and not a piece of meat on a bed or stastic.

Reflecting on the first year of The Great Hospital with NR Care (2:23)

Reflecting on the first year of The Great Hospital with NR Care

Gina and Ian reflect on how the year has been and how it has made them feel.

Highlights for Ian is that after all the co-planning it has come together as he had hoped, if not even better than.

Gina is incredibly happy after working through a number of Care Providers that were unable to offer the flexibility needed to make it work alongside finding NR Care who understand what the care needs are and have an ethos of if we can make it work we will make it work.

Over the year they have got a deeper understand of what each other do, the partnership has strengthened through this relationship they also note that when issues do come up they get sorted straight away.

Bravery to work differently at The Great Hospital (3:49)

Bravery to work differently at The Great Hospital

Gina and Ian talk about working differently to ensure residents receive unique and good life at The Great Hospital.

It takes a bravery to look at how resources can be used sustainably whilst providing subsidised activities and meals along with care that ensures independance and good care.

Ian and Gina provide examples of what this looks like, and how through working in partnership with AGE UK residents have supported awarness to what benefits can enable them to have more financial choice.

Valuing people more than systems (2:06)

Valuing people more than systems

Fitting support around the person rather than expecting people who have chaotic lives to fit around the system is a key part of how Under One Roof provides support, otherwise it is setting people up to fail.

Zena and Angela talk about how they navigate the reality of the work with other services from managing how they run courses, exploring ways they can work with other services whilst holding the value of individuals and lived experience at the heart of the service they provide.