‘She deserves to live somewhere where she is happy’

By an independent mental health advocate from VoiceAbility

Deborah* was the first person I saw this morning. Her head is lowered and she clutches a handful of shabby, worn photographs and a homemade photo album.

The image is bleak, but her dilemma gets to the heart of why advocacy matters so much in assessment and treatment units like the secure hospital where I deliver independent mental health advocacy.

We have worked on this issue for months. My advocacy is partly instructed – Deborah has said she wants to move closer to home – and partly non-instructed because Deborah sometimes finds it too stressful to talk about the issue in detail and would find it hard to explain the impact of her prolonged stay in hospital.

We have complained to her commissioners for an unacceptable delay in the allocation of an external case worker. I have also found a solicitor with a good understanding of how the tribunal process can support a push to a more suitable placement.

A vicious circle

We start by calling the external social worker and asking if they have contacted the provider who assessed Deborah and is certain they can build a bespoke placement close to home for her.

This assessment is massive – Deborah has been caught in a vicious circle, where she was assessed but turned down by providers because her behaviours still required periods of seclusion.

If the bespoke placement is agreed to, it will initially be commissioned as a hospital so the move can happen while Deborah is still detained under section 3.

Since the tribunal refused discharged while Deborah was still unwell, this seems the best way forward. Her placement can then be decommissioned and potentially become a home for life if that is what Deborah wants.

It’s not the only option on the table. Hospitals, who think they can offer Deborah the support she needs, have come forward but these are far from home. I will be advocating strongly that Deborah wants to move closer to home to the bespoke placement – she deserves to live somewhere where she is happy and has the right support.

Safeguarding alert

Liam* and I don’t often meet. We pass on his ward regularly and he will just put his thumb up and I will return this gesture. Today he insists on meeting me.

He starts hesitantly. It’s clear he is finding it difficult to talk to me about something that is bothering him.

Liam asks if he can move back to the hospital he was at previously. He tells me the staff were nice there. We talk about his options a little while I give him time to tell me more.

I ask him if he is being looked after well here. He tells me that he sometimes is. He says it is the night staff that are not always good. He names a member of the night staff who is not good to him.

This member of staff has been named in safeguarding and complaints a number of times in the four years I have worked there.

It’s the kind of concern that would usually be dealt with by speaking to the hospital, but warning bells ring immediately. I raise a safeguarding alert, drawing the attention of the hospital and the local authorities to my observations and also that this employee is working nights.

Nobody knew what was wrong

Whilst clearly helpful, advocacy is not necessarily reliant on having worked in a place or with a person for a number of years. This afternoon I attended a Care Act review for Bev, who was unable to instruct me at all. I had only met her once before.

Nobody in the residential home could tell me what was wrong with Bev* or why she had become disabled to such an extent that she could not speak or control her movements. The notes from her previous placement said she had brain damage at birth.

Other than what could be gleaned from the dedicated interactions of her staff team, one of whom had known her for several years, nobody knew what sort of a person she was or what her likes and dislikes were.

Family, it seemed, hardly wanted any involvement although the home had a contact number for an aunt and uncle who sent cards on special occasions.

I called the aunt who was very pleased to speak to me. She told me that far from not wanting involvement they would love to be kept updated and were in fact sad this was not happening. They would like to consider a summer holiday so they could visit Bev with their grandchildren.

What Bev might want

They told me that Bev had been perfectly healthy up until the age of five when, after a routine operation, she had become increasingly disabled. As we talked they remembered more about the sort of person Bev was.

I provided my report at the Care Act meeting and it was agreed that more work needed to be done to establish what was wrong and what Bev might want if she could communicate. Without this information, the right health support and treatment cannot be secured.

The key workers agreed to email the consultant with their concerns and questions in preparation for the next appointment. They also agreed to thoroughly explore and support family involvement.

Realising the irony

Now that my day has nearly ended, I take my eldest child to a meeting at a university. I finish early to drive there, then set up office in a quiet corner of the student union and set to work on my report about Bev.

Rather pointlessly I spend the first 10 minutes writing it for the professionals before suddenly realising the irony of my actions – I include in my report that the info about Bev’s health should always be in easy read.

I start again, writing it for Bev in short, simple, easy-read sentences. By the time that my daughter has finished, my report is complete and emailed off.

I wonder what tomorrow will bring for me, Deborah, Liam and Bev.

*The names of the service users referred to in this article have been changed