Emotional wellbeing and mental health needs are severely neglected

My sister, who is 54 years old and has learning disabilities, has had a serious mental health crisis over the past six months. This resulted from a threat to remove sleep-in staff in the supported service in which she lives.

I’ve decided to share her experiences because they highlight serious shortcomings in how the emotional wellbeing and mental health needs of people with learning disabilities are considered.

The decision to remove sleep-in staff appears to be related to the court ruling from 2017 that care workers should be paid the national minimum wage for every hour of a sleep-in shift rather than a flat rate (although the court of appeal overruled this in July 2018).

A year ago, my sister was told sleep-in staff were going to be withdrawn from the service where she has lived for 11 years. As a result, she became very distressed.

I found out about this only accidentally because I had happened to visit on a particular day.

Despite reassurance and support, my sister’s distress continued. She was given a telecare alarm button system as an alternative to sleep-in staff, which she is unable to use because she is deaf.

From the beginning of 2018, I noticed a gradual change in my sister’s usual outgoing nature and, by May, her mental health took a serious turn for the worse.

She was admitted to the local general hospital to check for physical causes. While there, she went through an acute mental health crisis and, as a family, we were told she could not return home because care staff could not manage her behaviour.

She was abandoned by social care services, so we were left to support her while trying to access some specialist help.

Eventually, because of the degree of her mental health crisis, she was sectioned and diagnosed with post traumatic stress disorder, anxiety and depression. As I write, she has spent five months on the ward, during which time she has repeatedly told us she wants ‘to go home’.

The psychiatrist has proposed using section 17 leave for her to return to her home, in the hope her recovery will be hastened once she is back in a familiar environment. I’m waiting for funding to be approved to enable her return.

These experiences demonstrate how crucial it is to prioritise the emotional wellbeing and mental health needs of people with learning disabilities.

I believe my sister’s crisis could have been avoided had our concerns about the impact of this change on her mental health been taken seriously.

Jane Lloyd Lancashire

Reading our son’s football article was thrilling for the whole family

We just wanted to let you know how thrilled our son Matthew was to see his article in print in the last issue (‘Freedom kicks off’, autumn issue, page 18).

It was fantastic for us as parents too – it was ‘so Matthew’ and it felt like we could hear him saying the words as we read it.

Thank you so much for letting his voice be heard once again.

Isabelle and Robin Garnett London