At our recent AGM we asked one of our young ladies, 20 year old Charlotte, to talk a little about her experience of using The Donna Louise. After reducing about 80% of the audience to tears - she summed it up beautifully, when she said “The Donna Louise is ‘Just There’.”
Two innocuous, simple little words that can mean so much – “JUST THERE”
That is exactly what we aim to be – “JUST THERE” for children, young people and families to support them in any way we can.
However long or short a child’s life may be, The Donna Louise is there to support every member of the family, every step of the way - from initial diagnosis until they no longer need us.
Whether having lots of fun and bringing families together at our purpose-built facility in Trentham, providing respite in the family home, being there during hospital stays, facilitating support groups in the community, or simply being at the end of the phone, The Donna Louise is there for families across Staffordshire and Cheshire - whenever, wherever, always.
Parents and carers often describe respite stays as their “lifeline” whether it’s for a few hours, a day or longer.
Caring for a child or young adult with complex needs can put a huge strain on the whole family, and respite breaks provide a fantastic way for families to recharge their batteries. To someone who is a carer 24 hours a day, 7 days a week, 365 days per year, it’s a chance to do things other people take for granted - sit on the sofa and watch a movie, spend time with their other children, and even enjoy an uninterrupted night’s sleep.
Although the opportunity to have a night off is a rare one, families often choose to come and stay in our family accommodation at The Donna Louise too. Our care team makes sure that every need of the child, teenager or young adult is met so that the family can take time off from being carers and just enjoy being a family.
For the children, teenagers or young adults staying with us, it can be like a mini-holiday - the chance to meet up with friends and have lots of fun. The opportunities to have fun are endless and each activity is individually tailored to the needs, interests and abilities of each child or young adult.
The Donna Louise offers a “one-stop” information, advice and support service for families trying to juggle the challenges of never-ending appointments and the minefield that can be health and social care.
Our highly trained care team works closely with other healthcare professionals to help manage symptoms by providing care that is tailored to the specific, and ever-changing, needs of each child, young person or adult. We also give emotional care and support to the whole family through counselling, art therapy, play therapy and music therapy.
We help to ensure that children’s clinical symptoms are well managed to help them enjoy life to the full but most importantly - we provide opportunities for families to be families – to enjoy being together, having fun and creating family memories.
The Donna Louise is now 17 years old. In those years we have continuously grown and evolved to meet the changing needs of children, young people and their families and the growing demand for care services.
As the children and young people are growing up, it feels like we are too – growing up alongside them, developing the maturity and ability to continue to care for and support them.
The life expectancy of children with life-limiting conditions is increasing; yet appropriate care provision that fulfils the specific needs of these young adults is currently non-existent in our areas.
In January 2016, following extensive engagement with families, staff and other professionals, we stopped discharging young people from our care at the age of 19 and embarked on our mission to raise enough money to build a state of the art facility that would enable us to deliver the best care possible in the most appropriate surroundings.
We knew this was the right thing to do and we’d heard enough horror stories and sad stories and negative feedback to confirm this. We knew that the young people we care for deserve better than what was currently available. We knew that here would be at least 50 young people requiring this care by 2020. And, we knew from working alongside young people and their families both what they need and what they want.
So we got our heads down and closely examined how we could do this in the best way possible. We knew we were in it for the long haul but at that stage we didn’t know that a very kind benefactor would come along.
In December 2016 we announced exciting plans to build a new multi-million pound young adult facility. Without this service, the future for young people, currently in our care, looked bleak, with no appropriate care services available to them.
Spring forward to September 2017 – we now have ...
• The funding secured!
• An amazing building design ready to be built - Thanks to a great team of local, qualified experts, who have listened to our ever increasing and changing lists of requirements!
• Planning permission granted!
The building will provide facilities for day care and overnight respite, and will encourage independent living as much as possible for our young adults.
This is a very steep learning curve for all involved. One we are embracing with a ‘can do attitude’, eagerness and excitement and a tiny little bit of trepidation.
We hope that the building will be open by Spring 2019, at the latest, and at this point we will very much look forward to sharing it with you.