My son, James, is 21. He loves socialising with his friends and family, going to college and football. But he’s also got a severe learning disability with autistic traits, and now rapid cycling bi-polar mania.

By the age of 16 James was having periods of very distressed behaviours. He would become agitated, anxious and unable to sleep at night. At these times, despite his best efforts, things were are out of his control.

James’ time in hospital

During these incidents we were unable to keep him or ourselves safe, and during a major crisis he was sectioned. As there are no local beds available, he was sent to a hospital 170 miles away in Norfolk for a month’s assessment that turned into six months. We would visit him every week and bring him home at weekends as much as possible.

James started medication and suffered horrendous side effects. The behaviours that  followed were often put down to ‘challenging behaviour’ but the drug issues meant that he stayed in hospital longer.  At times he could no longer feed himself, , couldn’t hold a drink to his mouth and was very distressed. It was devastating to see him so unrecognisable from ‘our James’.

On the whole, the staff supporting James were great and appeared to like him. After he settled from the distress of going into hospital , the unit manager told me that he was ‘the most polite, well mannered, well behaved young person he had seen at his time in the unit’.

But we raised concerns as we felt something was wrong with James. As we were preparing for discharge he came home for weekend leave and we were devastated to see that he had extensive carpet burns on his face and legs. As a result of his injuries we decided that James should not return to the unit and we later discovered he had been restrained four times in the previous 24 hours.

Since then, James has twice needed admission to hospital in crisis, for three and eight weeks. This unit was 20 miles away so his staff team and family were able to support or visit him daily.

Living at home

We’ve had direct payments to support James and over the past four years I have increasingly managed his personal budget. Without this, I am certain that he would not be living at home.

We have an amazing, highly-skilled, valued team who all have a great relationship with James. Managing this is time consuming and involves a lot of work: hiring and managing staff, running payroll, doing induction.

Our flexible, vibrant team support James at college and make sure he can access the community even in very difficult times.

Extra support to keep James at home

Oxfordshire have set up new intensive support team. They support people like James to prevent traumatic admission and keep them at home when crisis is looming. They got to know James at a time when he was relatively well and in his normal environment. This means James won’t be frightened by them when he’s having a crisis.

They helped us in a recent crisis to keep James out of hospital. We needed feet on the ground and highly skilled 2:1 support alongside his staff for this period. Our local team are really working well with families and I know they have successfully prevented other people from being admitted to hospital.

The team allows us to access extra support at the right time – rather than wasting funds by putting extra support permanently in James’ package of care.

In July 2017, our adult health care transferred from Southern Health to Oxford Health. With them and the clinical commissioning group we identified a local bed for James if he needs it in crisis, and have arranged to visit.

James’ community consultant has worked to try and reduce his medication as much as possible. He’s observed that James has got much more character now and it’s easier to engage with him.

Working together in Oxford

I feel that our local transforming care partnership has given a platform for change. There is a real commitment now to have families fully involved in all plans from the beginning and to acknowledge that there have been difficulties in the past. There is a really positive feeling.

Along with other local families in similar circumstances we have had quite a few opportunities to meet the team from Oxford Health and discuss improved engagement with health and social care. I think that they really ‘get’ it.

A home for James

As for James, we are looking to see if we can find somewhere locally where he can live supported in a home of his own in the next few years.