Attending a national conference shouldn’t feel like a logistical miracle, but for many disabled people it does. When I arrived in Bournemouth for the National Children and Adult Services Conference (NCASC) this year, I breathed a huge sigh of relief. I’d made it. Behind that arrival sat weeks of planning, problem-solving and sheer determination to get the care and support I need in place.
The complex reality behind attending a conference
Normally when I travel, I arrange for a domiciliary care agency to support me in the mornings and evenings. This year was different because my husband, who usually helps with exhibitions and conferences and is an extra pair of hands, has recently had major surgery. He needs to rest and recover, meaning that if I wanted to attend, I’d need to think through alternative arrangements for my care and support.
Care arrangements weren’t the only difficulty. Suitable equipment and accessible accommodation can be hard to find, and this often prevents me from attending conferences altogether. Bournemouth happens to have one of the very few hotels in the country with a hospital profiling bed, which made this trip possible. Even so, every part of the plan had to fall into place.
At home, my carers are excellent: well-trained, valued and confident in supporting me with personal care and physiotherapy. When I travel, I need the same level of skill. I first hoped one of my London carers might be able to accompany me, but that wasn’t possible. I tried working with a Bournemouth agency I had already booked and even explored whether one of their London-based live-in carers might travel. After several dead ends, I remembered the holiday care agency I use in Wiltshire, Bramley Care. Fortunately, they were able to help. Once Continuing Health Care agreed short-term funding, everything finally came together.
Only then did I feel able to attend the conference and contribute.
Why my presence at NCASC mattered
It mattered that I could be there not just as an attendee but as someone presenting work I had helped to create. I served on the project group for the Care Quality Commission’s Well-led work and had previously been involved in another CQC project around domiciliary care agencies. I also contributed to the co-production of the Oxford Ethics statement on the use of generative Artificial Intelligence in social care.
These pieces of work were shaped collaboratively with people drawing on lived experience. It is only fair, and only honest, that contributors are present to speak about the work they have helped to build. Co-production loses integrity if the people who shaped the work cannot be in the room.
Good care makes participation possible
Good care and support isn’t simply a service; it is the difference between participating and being excluded. This depends on a workforce that is valued, paid properly, trained well, supported through supervision and guided by strong leadership and governance. When these things are in place, the benefits are obvious. My carers value me, and I value them. That relationship is what makes my life, and my attendance at NCASC, possible.
A moment of light relief
Once everything was arranged, the hotel managed to lift the mood. Throughout November and December, they run “Turkey and Tinsel”, and by coincidence 25 November was being celebrated as Christmas Day. My personal assistant and I arrived to find other guests dressed for Christmas lunch, complete with crackers and even a visit from Father Christmas. It certainly made for a memorable welcome.
The newly upgraded bedroom and wet room were a real improvement and helped make the stay comfortable. The only thing left on my wish list is for them to reconsider the name of the dining room, which is currently called “The Plantation Restaurant”.
Sharing the work and learning from others
With the logistical hurdles behind me, I was able to focus on the conference itself. I presented at two sessions, including the session on generative Artificial Intelligence. My plea to anyone exploring AI in social care is simple: please use the co-produced Oxford Ethics statement. There is no need to reinvent the wheel when people with lived experience have already worked together to produce clear, thoughtful guidance.
Throughout the conference, I kept returning to the Making it Real statements that guide my care:
“We don’t make assumptions about what people can or cannot do,”
and
“I am supported by people who listen carefully so they know what matters to me and how to support me to live the life I want.”
These statements became real for me in Bournemouth. With the right support, I could contribute to discussions, share my expertise and connect with others in the sector.
When barriers keep people out, we all lose
As always, NCASC gave me the chance to learn, reconnect with old friends and meet new colleagues. Hearing Steven Kinnock speak about co-production and direct payments, and knowing TLAP and NCAG’s messages are resonating with national leaders, was encouraging.
But despite the positives, the barriers remain. Attending a conference can be exhausting to organise, and I am often unable to go because the distance or the lack of accessible accommodation makes it impossible. This year worked out because I had the right support, knowledge and persistence. Many people do not have that. They shouldn’t need it.
Even when everything goes well, the hidden labour remains.
If we want lived experience in the room, the system must make it possible
Good care made my participation at NCASC possible. It should not require navigating a maze of agencies, securing exceptional carers and relying on luck. If we truly value co-production and want disabled people to shape the future of social care, the system must make it easier for us to simply be in the room.
