Rightful lives – Q&A with Jordan Smith and Mark Brookes

Rightful Lives, an initiative to highlight the human rights of people with learning disability and autism, recently consulted on a plan to support community living and move people out of inpatient settings.

As part of the consultation, we spoke to Dimensions’ Health Equalities Lead, Jordan Smith and Dimensions’ Campaign Advisor, Mark Brookes about what they think is important to make sure people with learning disability and autism can live in their own homes, not hospitals.

Following the exposure of abuse at Whorlton Hall, Dimensions has called for action to move people out of hospital. We want Care and Treatment Reviews (CTRs) to be a legal entitlement for anyone in hospital and for commissioners to be fined when transition dates set out in the CTR are missed. You can read more about our response to Whorlton Hall here.

One of the problems at the moment is that people in hospital don’t have a plan to move them out. What do you think should happen about this?

Jordan: We shouldn’t be having people in these places in the first place, we should be closing them down. If I went on BBC News right now and said that most hospitals should be closed, most people would agree with me. I think no one should have to go to these units in the first place, regardless of their level of need. The problem is we don’t have other places for people to go so they end up in hospital and that comes down to social care funding and there’s a real shortage of houses and homes.

Mark: If people have been in hospital for more than 2 years and have been waiting and have been promised that the can move out then those people should get priority. People who have been there longer than they should have been in should get a review right away.

Rightful Lives have suggested an independent body should be set up to oversee the decisions that commissioners make about people moving into hospital and back to the community. Is this a good idea?

Mark: I think it is a good idea. It should have people from outside and people with lived experience.

Jordan: I agree. People are getting lots of money to have people in these units and it takes people with experience, people and their families to go in there and say when it isn’t right. Instead of spending money on places in hospital they should be spending money on new homes. Why can’t they use the money to give people a better quality of life?

When you talk about people with lived experience, what does that mean to you?

Mark: It means people who have experience that makes them understand what’s happening. You don’t have to have had the exact experience, but you will understand because you have a learning disability and can imagine what it’s like.

When Transforming Care was introduced the government committed to some funding, but they didn’t say exactly what the money should be spent on. Do you think money should be ring-fenced?

Jordan: Definitely, money should be separate and ring fenced to get people out. It’s got to be specific money for moving people out of these places into their own communities. Money is power and when you’re giving commissioners money you are giving them power. You should be giving money to people and their families to help get out of these situations.

Mark: Money could be given to the independent body so they have control and can look after money and know where the money is going to be spent. Or even give money to people before they go to an ATU to make sure they don’t need to. For the past number of years I’ve been meeting commissioners at my local partnership board and they just don’t get it. I don’t think that they don’t care, they just don’t understand what good support looks like.

Recently, there have been stories about families being prevented from seeing their loved one in hospital or being stopped from speaking about their experience. What do you think the role of families should be?

Mark: I agree that families should be given rights to visit and speak out. 

Jordan: Families are people’s biggest advocates a lot of the time. Even in prison you’re allowed your free phone call and people can visit!

Mark: Self-advocacy is important too. Self-advocates should be able to help people who are in hospital.

Rightful Lives are also asking for more information about the number of people in ATUs, about where people are and how much money is being spent on them. Do you think this is important?

Jordan: I think maybe companies don’t want you to know. There should be a law to release this information and commissioners should have to do it so they can be accountable.

Mark: If one person costs £3000 a month and all they’re doing is sitting in their bedroom then that’s not value for money for that person.

Jordan: And you need to be transparent to make comparisons. If money is just going down the toilet because people aren’t getting a life then you should be able to challenge that and say we’re not going to let you have this money anymore because you’re not spending it wisely.

Any final thoughts about what should happen to get people into their own homes instead of hospitals?

Jordan: It’s about choice and control. When you medicate someone you’re just masking the symptom. You shouldn’t just rattle pills at someone, just because you think that’s the answer.