Real life stories
A family perspective
Lynda asked us for a service to be set up especially for her daughter, it turned out to be a life-changing experience for all her family.
When we met the former CEO Steven Rose for the first time in the old Southwark head office in 2001, we had no idea that one simple sentence could be so life changing. We asked if we could commission Choice Support to provide 24-7 care for our daughter, living in her own home and funded directly by her. Steven's reply was "Well, we've never done anything like that before, but I can't see why not." All I heard was "Yes", and it was the best decision of our lives.
I didn't realise how ground-breaking this positive response was, and how Olivia would pave the way for others to commission services directly. Steven's vision and Choice Support’s pioneering approach was life-changing for my daughter, for her family and subsequently for thousands of other vulnerable people and their families and carers across the country.
Before moving to her own home in 2001, Olivia had lived with us, her father, sister and myself. But we knew that she would need more help than we could give. It was exhausting and we felt we were not doing the best for her. Olivia has multiple and profound disabilities and is totally dependent upon others for all her needs.
We found a bungalow which could cope with her two wheelchairs and various pieces of equipment, and which she was lucky enough to be able to afford herself. A few months, adaptations and decisions later we moved her in, with her very first Choice Support team.
Families are always anxious about support, and I will admit to taking a long time to “let go”. It felt like a huge risk. After 20 years I knew best, didn’t I? Will they look after her as well as I do? (Usually, but sometimes better!) Will they do things the same way as we do in our family? (Mostly but sometimes nicer!) Can I be part of the team too? (Yes, there will be a huge range of skills). Will she be safe, happy and healthy? That is the first and foremost concern. Gradually I realised that with support and care centred on Olivia, rather than shared with the whole family, she could have her best life.
After a few months settling in, we had created a routine. The team knew I could be contacted by phone 24 hours a day (this was before Facetime or Zoom), and there was the occasional middle of the night phone call about temperatures, seizures, and disrupted sleep. But they felt that the house was very quiet and suggested that we consider advertising for a housemate to keep Olivia company. Becky arrived, and the team staffed up accordingly.
Now the house was livelier, busier, noisier – and more like a home. And so it is today. They have a third housemate, and Lisa has brought more fun and interest to this little family and their carers. They do all sorts of activities within their own capabilities – swimming, aromatherapy, physio, walks, shopping, cooking and enjoying their small garden. I go and visit as often as I can and have even “visited” them digitally from my travels around the world.
It would be unrealistic of me to say that everything has been rosy. It never is when you have severe and multiple disabilities, and of course there have been one or two problems along the way. But I’ve never stopped being amazed at the commitment of her support workers and carers. Some have stayed for years, and some just a few months. Some have started with Choice Support and used their experience with Olivia to gain promotion in their chosen career, some have remained being expert support workers. All have brought their own skills, experience and ideas - cooking, music, gardening, playing, communicating and chatting. I’m proud that some of the most dedicated people I know are supporting Olivia to live her best life and have also supported me and my family in this huge task.
I’m writing this in lockdown, and we all wonder where the coronavirus will take us. We’ve been Clapping for the Carers every Thursday. But it’s not enough. Support workers, along with healthcare workers look after the most vulnerable in our society, and they are paid minimum wage. That is just wrong.
I’m now a Family Ambassador for Choice Support, and would be delighted to be the point of contact for other families on a similar journey. Do get in touch!