Hospital is not a home

Written By Dr Cassandra Lovelock

Cassie Lovelock considers what would an accessible social housing system look like for neurodivergent folk?

I was pleasantly surprised to be invited to talk about the relationship between neurodivergent people and the social housing system in the UK. And what a system it is - you can watch the recording of my talk here. But I am going to use this space to go into more detail about one of the points I made:

Long term hospital stays for ND people are being exacerbated by the lack of social housing.  

Long term hospital stays are not appropriate for anyone. Hospital is not a house. It is not a home. Particularly when you’re being held in hospital under the Mental Health Act (1983) hospital is closer to a prison than a home. You’re only allowed access to some of your belongings, others only when supervised. If you’re lucky you’ll have your own bathroom, if you do not then well. There might be cameras watching you 24/7, you can’t have friends over without permission or it being visiting hours. Hell you can’t lock your own door.

Hospital is not a home.

Neurodivergent people spend an average of 5.5 years on mental health inpatient wards with 90% of those being held under the Mental Health Act (1983). 5.5 years! From a baby to being in primary school, that's longer than an undergraduate degree, somehow shorter than a bunch of NHS waiting lists. No one is placed in an inpatient ward knowing it will be for over 5 years. You’re told it’ll be a few weeks, then a few more weeks, then a couple more months, you’re kept waiting, Hooked in by the idea that you'll be going soon. Going somewhere with support, a home you can call your own, where you can lock your own door and decorate without getting permission.

No one goes to hospital thinking it is going to be their home for the future. No one goes to hospital expecting to have to build a home on a ward.

Adult neurodivergent people get stuck in hospitals because when we try to leave there is nowhere for us to go. In theory, discharge from hospital should be multi-agency, joint-up between housing, social care support, mental health services, the person's chosen social network, and the person themselves. But it rarely works like this. In fact, the majority of people are discharged without a suitable care plan from mental health services, nevermind a social care plan, and housing.

Often when you are discharged without housing you’ll go into temporary accommodation. Depending on your local council this could be Airbnbs, b&bs, hotels, or hostels and this type of housing is completely unsuitable for a lot of people but incredibly inaccessible for neurodivergent people. You have no control over your environment so how are you meant to make it sensory friendly? Connect with the staff when there is such a high turnover? Make friends? A safe place to stim? To keep your belongings?

Temporary accommodation is not a safe environment for anyone, never mind neurodivergent folk. Experiences of sexual assault, assault, drug and alcohol misuse, loneliness and anger are all wrapped up in the temporary housing system. Which when compounded can often lead to mental health crisis. Crisis leading to neurodivergent folk ending up back to another seemingly endless stay in hospital because services cannot join up to make an environment safe to be discharged into.

We are for lack of a better word, homeless.The housing system is notoriously inaccessible for everyone. But for neurodivergent people it can be insurmountable. You’re left waiting for that one above and beyond staff member who can support you to sort things. Or you’re told to move back in with your parents after discharge.

In a system and culture that is constantly pushing for neurodivergent peoples’ independence, it's a bit rich that systems cannot even begin to facilitate the support needed for that to happen.

References

Brick by Brick; Resources to support mental health hospital-to-home discharge planning for autistic people and people with a learning disability – NHS England (2023)​

Building the Right Support​ - NHS England (2015)

Building the Right Home - NHS England (2016) 

Dr Cassandra Lovelock

Associate

Cassie (she/they) is a Black mixed-race wheelchair user living with chronic illness and neurodivergence.

She is a scholar activist whose work focuses on ethical, community based and lived experience led research, education, and policy making practice within the fields of mental health, neurodiversity, unpaid care, critical disability studies, and race studies.

As an academic, Cassie's current work focuses on the intersections of poverty, mental illness, and support from the welfare state in the UK and ethical ways of co-producing knowledge and knowledge equity among communities that are disempowered within mental health, social care, and welfare services in the UK. She is a lead lived experience consultant in NHS England's adult mental health, and mental health, autism and learning disability quality transformation teams.

Outside of work Cassie mostly reads fiction, writes poetry, and hangs out with her cat.

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