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Breaking Down Barriers: Transitioning from Hospital to Community Care

There are currently over 2,000 people with learning disabilities and/or autistic people in hospital at any one time. Over half have had a total length of stay of over 2 years, including 350 people who have been in hospital for more than 10 years.

Many of these are trying to leave these settings, yet face barriers when doing so.

In this article, we will explore some of the key obstacles that the person will face when making this transition, shedding light on the changes that need to be made to ensure smoother transitions for those stuck in hospital settings.

1: Housing: Making a house a home.

Topping the list of barriers is the question of where and how the person will live, and crucially, how do we find the right housing for people to meet their needs in a community that they want to live in? A house, in essence, is just a shell; what truly matters is transforming it into a home that caters to the person’s unique needs and supports them to feel safe. Even when a property is sourced, there are critical questions which arise: What modifications need to take place and who will support the finance of the necessary modifications? Who will ensure that the person is involved in transforming the property, into their home, as much as they can be? Who will ensure that the persons needs are met, whilst still retaining that homely feel, and not a hospital or someone’s workplace? Who supports the person financially to look after their home in the short and long term?

2: Co-ordination issues: Confusion of the person’s pathway.

Navigating the transition maze can be bewildering due to the involvement of a multitude of professionals—social workers, parents, commissioners—each offering diverse perspectives on what they feel is best for the person. The fragmentation of services and professions within the care system leads to confusion regarding what is best for the person. This lack of clarity results in planning delays and difficulties coordinating transition, causing frustration and uncertainty for the person and their families.

3. Label Syndrome: Silencing the person

In the transition process, it often appears that the person undergoing the shift from a hospital setting to a home in the community is the only one not consulted about their desires and needs. Rather than seeing the person for who they are and actively listening to what they want, they are often reduced to a collection of labels and past history and ignored. Regrettably, it’s not uncommon for negative incidents to dominate their records. Inaccurate reporting of events can further unjustly prolong their discharge.

4: Risk Aversion: The safety trap

Hospital settings provide a sense of security with locks, high walls, and constant surveillance. Transitioning to the community necessitates embracing risk and uncertainty. It’s easier to keep people in a secure setting rather than allowing them to experience life in the community. Some professionals may find it unsettling to be ultimately the one responsible for giving the green light to the move, causing further delays.

5. Finding the Right Provider: Appropriate service for the person

Finding a provider who is willing to take on extremely complex service (and by complex we don’t mean behaviours, we mean the history etc), as well as the risk of moving them from a secure hospital setting into the community are few and far between. This means those providers are already spread thin and may have long waiting lists before their service can even begin the transition.

6. Insufficient bespoke Providers: Tailoring services to the person

Even when a provider is able to see the person for who they are, it doesn’t guarantee they are the right fit for the person. Are they offering off-the-shelf services, or are they willing to create customised support packages? Are they open to collaborating with the family, who have tirelessly advocated for their loved one throughout the years? Are they willing to take positive risks and support the person to live a life they choose? 

These barriers loom large in the path of people seeking freedom from hospital settings. By raising these issues it’s hoped that the right bodies can work together to ensure as smooth a transition as possible that respects the person’s needs and wants. 

Update February 2024: The National Institute for Health & Research have published a study on the barriers facing people with a learning disability/autistic people leaving long stay hospital settings. With the conclusion being:

“Working to make the voices of people with learning disabilities and/or autistic people (as well as the staff who support them) centre stage is complex and sensitive. However, this lived experience/practice knowledge is a crucial resource if we are going to develop better policy and practice solutions in the longer term.”

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