Being a parent carer of a child with complex health needs can be “daunting and frightening” but that does not stop you “fighting for them”, says a mother whose son requires 24-hour care within a Northampton mental health hospital.

Jane Hillier* has a 19-year-old adopted son who has a learning disability, autism and experiences psychosis. She has bravely shared that bringing him up has been hard at times, but she has never stopped loving him and ensuring he gets the right care. 

Jane’s son is now living in a bespoke supported transition complex within the grounds of St Andrew’s Healthcare, where he has staff looking after him around-the-clock. 

Speaking out during Carers Week, which started on Monday, June 10, Jane said being part of the carer community is very special to her.

Jane, who also works full time as an emergency call handler, said: “We as a community of parent carers, we support one another, we love one another and we understand and accept when we’re upset, we support, we hug. When we’re happy, we celebrate the good moments.”

“So, with Carers Week, I just want to say a big thank you to all of us out there. Some of you may see this video and know I’m saying this to you: ‘you do a fantastic job and we should be recognised for it’.”

The mother of two, even runs a Facebook page for carers and adopted parents who are looking for support from other parents in a similar position called Pre and Post Adoption Support for those Adopting.

She added: “Being a parent carer of a child with very complex, very challenging needs, is very daunting and very frightening. But, because it’s your child, and you love your child, you will do anything to protect and help them. As parent carer, you have to fight for every service.”

Jane’s son’s mental health began to decline during the pandemic and he was admitted to a hospital close to where they lived. However, due to his other complex health needs, the environment for him did not help and he became more unwell.

Jane said: “He got worse and it was awful to see. To watch your son decline in front of your own eyes was heartbreaking. We fought and fought, and eventually we got him moved to St Andrew’s Healthcare’s Child and Adolescent Mental Health Services (CAMHS), where he really started to improve.

“When he turned 18, St Andrew’s created Lime Tree Cottage, which is a bespoke service for him. This has been life changing for him. My son now has the freedom to roam around, he has his own bathroom so he can clean and dress himself. He has an amazing relationship with the staff who are always on hand to help him and he has come on leaps and bounds.”

St Andrew’s Healthcare’s CEO Dr Vivienne McVey said: “Lime Tree Cottage is a single-occupancy ward, located within a small house which serves as a step between inpatient secure care and community living.

We call this a Supported Transition Service. This will be home for Jane’s son for the time being until he’s ready to move back to living in the community.

“To ensure his move to Lime Tree Cottage was as smooth as it could be, we made sure some staff – who knew him well from CAMHS – moved with him, so he has been surrounded by familiar faces. We have a dedicated team who ensure he is supported, and he has his own space within our grounds with access to all our hospital facilities and amenities. He’s now getting used to Lime Tree, and the next step will be preparing him to move back home.”

“Here at St Andrew’s Healthcare we are passionate about not only supporting and inspiring hope within our patients, but also their families and carers. We understand that caring for someone with a complex mental health condition can be challenging, which is why we have a dedicated Patient and Carer team who are on site to provide support when they may need it.”

*We have changed Jane’s name and not mentioned her son’s name to protect his identity for safeguarding reasons