Tanya, who works for Tees, Esk and Wear Valleys NHS Trust Foundation (TEWV), struggled for years to get help for her daughter, who was diagnosed with Full Global Delay as a baby.
Tanya
“Being a first-time mummy was the happiest feeling in the world. I was full of thoughts of pink dresses and outings with my nearly new pram,” she said.
“Well, that was short lived. The consultant told me she would need lots of support. At 19, and with a basic education, I had no idea what that meant or what to expect.
“I guessed the doctor knew best, but I remember going home on the bus, holding my beautiful daughter, and the tears inside me wanted to burst.”
Tanya was determined to do what she could for the baby and support her in every way possible. But her trip to the consultant also left the young mum hurt and confused.
Indeed, as a new carer Tanya often found her knowledge and views about her baby’s complex medical needs weren’t listened to – which took a toll on her health and wellbeing.
She said: “I was made to feel it was the professionals who knew what was right for my daughter, not me. I took endless trips to the local GP, who passed me onto a consultant.
“But they didn’t listen when I tried to say she doesn’t sleep, she doesn’t talk, she doesn’t walk, she screams and throws herself back.”
Finally, Tanya and her daughter were referred to Social Services Children’s Services, but yet again the young carer failed to secure the help she needed.
“When you’re a mum, you just get on with it and enjoy it. But there were times of desperation, frustration, anger, and no support from anywhere,” she said.
As the years passed, Tanya continued to find it hard to get people to understand her family’s specific needs, including medication and respite. Being a carer “felt like a constant battle”.
Indeed, it was not until her daughter was 32 that she was finally diagnosed as autistic with complex needs.
A childhood photo of Tanya’s three daughters
“I just wanted what was best to suit our very different family,” said Tanya. “I was also desperate to have some support for me in terms of education.
“I wanted to understand and manage my daughter’s difficult behaviours, but was made to feel like a dummy at her yearly review. I had no fight left in me.”
Tanya found the signposting she was given was often unhelpful. Indeed, it left her feeling “even more desperate, anxious and like a confused failure”.
At one point, after a long review of need with her local council, thoughts of suicide entered Tanya’s mind, but that quickly went away.
“I gave myself the biggest shake and got some strength to go home and make tea for everyone. I am one of the lucky ones, some are not so lucky.”
Tanya knew that finding a way to communicate and work with clinicians was essential in getting the support her family needed.
At 40 she started medical training and, following more than two decades as a carer, her experience inspired her drive forward improvements for carers everywhere.She said: “I never had time for a Mills and Boon, never mind researching what Full Global Delay meant for me and my family!!! Or the definition of a Carer.
“My very good colleague once said: ‘Right then, battle knickers on!’ My response was: ‘Mine are threadbare.’ We laughed and cried.”
Tanya’s daughters
Tanya, a mum of four with six grandchildren, is now a member of our Trust’s carers working group – which launched our Carers Charter.
The charter sets out commitments for how TEWV will support carers, with the aim of giving people who take on caring roles a real voice in the care and treatment of their loved ones.
Tanya is also calling for organisations across the country to consider improvements to the support offered to carers, and she recommends that those in the medical profession:
- Take time to hear the narrative and life story of a person and their carer.
- Make sure they listen to carers – as not being listened to is frustrating and can cause even more distress.
She said: “This should be happening all of the time, not just during Carers Week. Let’s make it everyone’s business every single day.
“My wish before I retire is to see serious gold standard and change!”
Elizabeth Moody, director of nursing and governance and deputy chief executive at TEWV, said “As well as making sure we care for our patients, it is vitally important that we also support the wellbeing of those who care for them. We want to help carers feel able to cope with caring. Being a carer can be a challenging role which entails a mix of emotions, unique and individual to the carer. As well as being busy caring for someone else, carers have the rest of their daily lives to go about and this can be tough and demanding.”
As part of its commitment to support carers, Tees, Esk and Wear Valleys NHS Foundation Trust is a member of the UK’s Carers Trust Triangle of Care membership scheme which recognises carers as key partners in the planning and provision of mental health care. The Trust’s Carers Charter supports the Triangle of Care approach to encourage better collaboration and partnership with carers.
Find out more about our Carers Charter, and how to get involved, here: Carers charter – Tees Esk and Wear Valley NHS Foundation Trust
