No-one should cope alone: the stories of North Yorkshire's unpaid carers
In North Yorkshire, more than 53,700 unpaid carers provide essential support, with some dedicating over 50 hours of care every week. These individuals play a vital yet often unrecognised role in our communities. Many don't see themselves as 'unpaid carers' - they see it as 'just looking after a loved one'.
Despite their contributions being valued at an estimated £530 million per day (£193 billion annually) across the United Kingdom, many people struggle to maintain their own identity, mental health, and wellbeing when they're looking after someone at home.
Across our county, countless unpaid carers quietly devote their lives to looking after family, friends, and neighbours who couldn’t manage without them. Yet too often, their stories remain unheard — despite their work being essential to the health and wellbeing of our communities.
This series of blogs shares the lived experiences of local carers, revealing the emotional toll of caring around the clock, the frustration of being left out of key decisions, and the devastating impact of poor communication and inadequate support.
Through their own words, these carers remind us that no one should be left to cope alone. Listening to them and involving them in decision-making is not only respectful — it’s essential.
Joanne's story: The loneliness of coping alone
Unpaid carers like Joanne play a vital role in supporting people with complex needs across North Yorkshire. Many care around the clock, often with little or no formal support.
After caring for her sister-in-law for 30 years, Joanne shares the emotional and physical toll of being left to cope alone. It highlights the challenges many face when trying to navigate health and care services and the long-term impact that caring can have on someone’s life.
Despite multiple hospital stays, she felt let down by discharge processes and the lack of support that followed.
“Every time they have discharged her without a plan in place. The ambulance staff brought her home and left without helping us get her upstairs.
One discharge left her physically and mentally unprepared. Joanne's own health began to suffer under the pressure.
“I have collapsed on some occasions due to my mental and physical exhaustion.”
Support from a local carers organisation thankfully helped her feel heard and supported.
"The carers organisation supporting me helped me more than anyone. They calmed me down and told me to go to my doctor.”
Joanne also described the trauma of a safeguarding referral, despite years of dedicated care.
“They put a safeguarding in against me — even though I had looked after my sister-in-law all these years. I had a letter from my very supportive GP saying I was able to care for her, but they refused to accept it.
Eventually, her sister-in-law moved into a nursing home.
“Even though the safeguarding was dropped, I just couldn't manage anymore.”
Reflecting on the long-term cost of caring, Joanne shared:
“I never got the chance to have a career or work. Now in my old age, I don’t have much money. It takes over your whole life.”
Joanne's experience shows the long-term personal cost of caring without consistent support — physically, mentally, and financially. When discharge processes fail and care services fall short, the responsibility falls entirely on carers. We must ensure no one is left to cope alone when they reach breaking point.
“It takes over your whole life. There have been times when I felt at my wits' end.”
Sue’s story: Exhaustion and exclusion
Sue describes the exhaustion of round-the-clock caring for the husband and the frustration of being dismissed by professionals at every turn.
Her story highlights the emotional toll of being a full-time carer without meaningful support, and the harm that poor communication and exclusion from decision-making can cause.
Caring around the clock left her physically and emotionally drained.
“I cared for my loved one 24/7. I am living in constant exhaustion — mentally and physically.”
After a social care assessment, Sue was offered just one hour of support per day — far from what was needed.
“After the social care assessment I was only offered one hour per day. I had to deal with the other 23 hours. What good is one hour? I had to get up at 1:00 AM every night to give Parkinson’s medication.
She also felt professionals often made promises but failed to follow through.
“The social worker said he was there for me anytime, but I didn’t feel heard or supported. I just wanted my voice to be heard.”
Despite attending appointments together, Sue said her concerns were repeatedly dismissed.
“I went to my GP with my husband. They would not listen to me. They just listened to the patient who says they're OK — when I’m the one who sees it all at home.”
Sue reached breaking point.
“Why does no one listen to carers? I was like a zombie, not sleeping.”
Her husband eventually ended up in intensive care. Communication from was said to be inconsistent and overwhelming.
“Three different people came into the room on different occasions and all said three different things. Every day was like a rollercoaster ride.”
She was not involved in decisions, only told what was happening — often in a rushed or casual way.
“I didn’t have a say in anything — they just come in and tell you, not ask you. One doctor even said, ‘I was going to do brain surgery but second thoughts we won’t remove part of his skull now.’ Like it was a casual decision.”
Sue's story is a powerful reminder that carers are experts in the day-to-day needs of their loved ones — and yet they are often the last to be heard. Exhaustion, stress, and inconsistent information from professionals add unnecessary strain. Listening to carers and involving them in decision-making is not just respectful — it’s essential.
“Why does no one listen to carers?”
Bill's story: Communication gaps in hospitals
When his wife Margaret was in hospital, Bill felt there was a lack of empathy, consultation, and consideration given to family members.
This story reveals the communication gaps carers often face from hospital teams — and the emotional distress caused when families are excluded from key decisions.
Support from other carers has been a vital lifeline for Bill.
“We would be very isolated without the carers' coffee group.”
Bill's wife had been admitted to a local hospital in North Yorkshire with breathing difficulties due to chronic asthma and other ongoing health conditions.
He was concerned about how serious discussions were being handled on the ward — especially around Do Not Resuscitate (DNR) decisions.
“The doctors were going round the ward with ‘do not resuscitate’ and asking patients. It’s so wrong when they are in such a vulnerable position and loved ones aren’t there. It should be a discussion away from hospital — not when you feel so ill and are struggling to breathe.”
Bill felt there was a complete lack of communication between the hospital team and carers like herself.
“There’s never any communication with carers. At the time, it felt like the hospital had no emotion or connection with us.”
The experience left her deeply uneasy, particularly after seeing the emotional toll it took on patients.
“One person signed ‘do not resuscitate’ while ill because they were in so much pain but regretted it as they felt fit afterwards.”
She reflected on the wider issue of family exclusion from serious decisions.
“They just don’t ask carers’ opinions. There’s never discussion with the family — which is wrong.”
This experience highlights the need for more compassionate communication in healthcare settings. Sensitive conversations — such as Do Not Resuscitate orders — must happen in the right environment, with families and carers involved. A lack of empathy and consultation leaves carers feeling powerless, and we must do better.
"There wasn't any discussion with the family - which is wrong."
Ann's story: Losing yourself as a carer
Ann reflects on how life changes when you become a full-time carer for a loved one — and how difficult it is to hold on to your own identity along the way.
Caring for her husband, whose condition fluctuates daily, Ann told Healthwatch she was emotionally exhausted and constantly adapting.
“I didn’t recognise I was a carer. Then gradually your life isn’t your life anymore.”
She described how better communication from hospital staff could have made all the difference.
“The way we’re answered when you ask questions — these things really matter when you’re so worried. One morning I was told he’d been moved. I asked if he had his belongings. The answer was, ‘I’m sure he has’ — but he didn’t. I spent the morning chasing wards. It was really upsetting.”
Ann often felt overlooked, despite having valuable knowledge.
“My husband was admitted for a condition he regularly has. I know how to treat it, but I was ignored until I mentioned I was a retired nurse.”
The emotional weight of watching her husband's decline was heavy on Ann.
“You feel physically exhausted watching the person you love change and become frightened. You have to constantly keep motivating them. Your relationship changes. You have to form a re-identity.”
Ann also described the pressure of caring for her wider family, and the unpredictability that makes planning anything difficult.
“You settle down, have a nice Sunday dinner — and then another medical incident, and he’s admitted again.”
“His 80th is coming up and the family want a party, but we don’t know if it’ll be cancelled. If you plan too much, you just feel disappointed and frustrated.”
Eventually, she recognised the importance of self-care.
“It takes time to know who ‘me’ is as a carer. You’ve got to be kind to yourself.”
Ann tried mindfulness after being referred by her GP.
“I never thought meditation would help — but it has. It takes practice, but it is helping.”
Ann's experience shows the emotional cost of long-term caring and the importance of being recognised, listened to, and supported. Supporting carers must include space to protect their identity and wellbeing — not just their ability to provide care.
“You lose who you were.”
Healthwatch response
These stories highlight the hidden struggles that so many unpaid carers face every day. It’s clear that better communication, more compassionate support, and real involvement in decision-making are essential.
It’s crucial that we not only acknowledge tireless efforts of people caring for their loved ones but also listen to their voices, respect their first-hand experiences, and offer the support they need.
At Healthwatch North Yorkshire, we are committed to continued listening to carers and working with health and care services to make improvements.
If you’re an unpaid carer and would like to share your experience — or if you want to help us shape better services for carers — please get in touch
Together, we can make sure no one is left to cope alone.
