"Mental health can be changeable and it can be challenging; being able to depend on and receive a consistency of care is vital."
Jill Scholl is an Expert by Experience and supports Sussex Partnership with her wealth of experience as a carer for people with mental health illness.
Here’s her story:
“15 years ago I was motivated to see how I could be involved in supporting the training and selection of NHS staff.
“I have a lifespan of experience of the NHS in one way or another and wanted to see what I could offer to help make services the best they can be. I have seen a huge amount of very good practice but also at times some less good practice. Patients, and carers, deserve the best service and so my role is to help the Trust continue to strive to meet high standards of care.
“When I was 20 my mother was diagnosed with schizophrenia. I had a lot of contact with mental health services on her behalf; there was some good experiences but there were also some basic things missing. This was 50 years ago and a lot has changed but, as with all things, there is still room for improvement. My oldest son also developed schizophrenia in his 20s. It was a shock but I found myself in the role of carer again and knew that I needed to act on his behalf to help him access the best help. For the last 10 years I have also been a carer for my step mother who developed vascular dementia.
“In the role of carer I felt very strongly that I was in a position to give my loved ones a voice when they felt powerless or challenged. Sometimes this can be a very isolating experience and I have seen a great variety in the way I am responded to as a carer. Carers can seem difficult, we can ask tricky questions but this is because we care about the person you (the NHS) are supporting and we want to make sure we are doing everything we can to give them the best quality of life possible.
“Looking back at all my contact with mental health experiences it is the exceptional people I met along the way that stand out, and there were many. They were the people who went the extra mile for my loved ones and also for me. They gave me hope and support and they were dependable. Mental health can be changeable and it can be challenging; being able to depend on and receive a consistency of care is vital.
“When the service we received wasn’t as good as it could have been and opportunities were missed I never felt this was due to a lack of care but because staff are constantly being pushed and stretched. One thing I am really interested in, in my Expert by Experience role, are the improvements we can make to our services that are not resource dependent. It’s great when I see staff working creatively to make improvements. It is the simple and seemingly obvious things that make a difference. A greeting, a kind word, remembering the family are part of the support team.
“Now, I sit on various committees bringing the voices of service users and carers to discussion and decision making groups; it is a privilege to be able to do this. It gives me the opportunity to share my experience and contribute to good practise and shaping the way going forward. I have been involved in the interview process for various roles. For me this is not just a tick box exercise to meet the criteria of having a service user voice but something taken seriously and valued.
“I have also been involved in co-producing the Induction Day for new staff. On the first morning staff are welcomed by a director, a service user and a carer to show the tripartite approach to care.
“My experience with the NHS as a carer for people needing mental health care has brought me in contact with many staff across the services. I am welcomed on various committees, working alongside professionals. They care about providing a good service and about making sure this vital resource is available for generations to come."