Kaddy Thomas, Founder of Carers Collective, a community supporting unpaid carers through advice, advocacy and connection, shares why this year’s Carers Rights Day theme, “Know Your Rights, Use Your Rights,” is crucial to building collaborative care.
Carers Rights Day takes place this year on Thursday 20th November. The theme, “Know Your Rights, Use Your Rights,” could not be more timely or vital. Across the UK, millions of unpaid carers provide crucial support for loved ones – yet research shows it takes, on average, two years for someone to even recognise they are a carer.
Two years without support. That means two years unaware of the rights and help available: the right to unpaid carers’ leave, to request flexible working, to register with a GP as a carer, and to access Carer’s Allowance if eligible. Two years where many struggle alone — unsupported and often invisible within health and social care systems. Sadly, it is only when carers reach breaking point, exhausted from juggling work, family and caring responsibilities, that they seek help. By then, many are burnt out, isolated, and in crisis. Collaborative care means ensuring support and information reach carers before they reach that point.
It should not be a fight — it should be a partnership.
At Carers Collective, we regularly hear carers describe the “fight” to be heard, to access resources, and to secure the support their loved ones need. As a parent carer to my son Elijah, now 19, I know this experience first-hand. When Elijah suffered a catastrophic brain injury, our world turned upside down. I was in shock, grieving, and trying to keep life afloat. No one told me about my rights or where to find support – I had to discover it all myself. It was exhausting.
The transition to adult services is another hurdle. When Elijah turned 18, everything changed — new departments, new assessments, new forms. Recently, a crucial payment was stopped by the DWP without warning, leaving us financially vulnerable. Because Elijah is still in education, I am now navigating a complex appeals process to get it reinstated — all while managing his round-the-clock care.
This is not unusual. Many carers tell me the system feels like a maze. There is no single handbook, no standardised guidance, and few professionals who proactively share information. True collaborative care means carers and professionals working together, so no carer is left to navigate alone.
Knowing your rights builds resilience. It’s about more than entitlements – it’s about staying healthy, financially secure, and able to continue caring. Collaborative care begins with awareness. Carers can turn to national resources such as Carers UK for factsheets, advice lines and legal guidance; connect with local forums and peer groups for emotional support; contact MPs for signposting to local services; and register with GPs to access health checks, flu jabs, and priority appointments.
Professionals have a powerful role to play. In health, social care, and education, they are often the first point of contact — sometimes before carers even realise they are carers. This gives professionals a vital opportunity to share information early and prevent future crises. Ask yourself: are you proactively signposting carers to their rights? Are you helping them access support networks, claim entitlements, and register with their GP?
Carers Rights Day is a perfect opportunity to review practice. A few simple steps — a poster in a waiting room, a leaflet during discharge, or a conversation at an appointment — can make a world of difference. These are the small but essential building blocks of collaborative care.
Every day, carers shoulder enormous responsibility and save the UK economy billions. But behind those numbers are parents, partners, and friends doing extraordinary things out of love. Giving carers timely information and support isn’t just good practice; it’s a lifeline. When carers and professionals work together, care becomes truly collaborative — and everyone benefits.
