Sherene, 41, cares for her husband Lee, who suffered a life-changing traumatic brain injury nearly four years ago. She became a carer overnight, but it took years for her to find support.
Lee’s injury affected his speech and movement. He suffered from post-traumatic amnesia for months, leading to confusion disorientation and memory loss, and daily rehabilitation continues.
The COVID-19 pandemic made circumstances especially challenging, and after just 16 days in hospital, including being on life support, Lee returned home for his care and rehabilitation supported entirely by Sherene who researched and created a recuperation schedule to fit around family life, meeting the needs of Lee and their two children.
“Once we were out of the hospital doors, that was it,” she said.
“He needed 16 dosages of various medications a day, but I wasn’t supplied with this medication or his discharge notes. After researching I realised that he wasn’t best suited to some of the medication, which I stressed to the GP, and a plan was created to wean him off this gradually. This took a further 17 weeks with the help of a GP over the phone, who was also relying on the input of other health professionals, as they would not visit.
“Covid-19 and the aftermath just prevented and delayed the correct support. It was very disorganised and continues to be disorganised. I do feel it’s an issue that has been there prior to covid. I experienced the NHS at its worst, the lack of communication, the lack of response, no physical help, literally just abandoned. I didn’t know what to expect and I was very alone.”
After the accident Lee, who was a qualified gas engineer, couldn’t work and the family went from a two-income family to a one income family, which continues to hit them financially. Juggling work, care and looking after two children gave Sherene no time to seek support for herself.
“It took a long time for me to receive support because I relied on professionals to give it to me,” said Sherene. “I was too much in the meeting ‘everyone’s needs zone’ with the caring element of things and working. But 20 months after the traumatic brain injury in November 2021, the pressure of it all around caused me to have breakdown due to exhaustion.
“I felt like I had a massive rock tied to me. I was sinking and sinking, I felt as though the water was coming into my lungs constantly. I was drowning, but I felt emotionally numb with it too, it was a total crisis point for my own health. It was at that point that I finally received some support and then a the two-and-a-half-year point, Lee’s care pathway plan was finally put into place.
Sherene also went through the appeal process to obtain a Blue Badge to access the community safely with Lee's health conditions and paid for medicine for three years without being made aware that Lee was entitled to free prescriptions due to his disability and health related conditions.
For the first time in nearly four years into her caring role, as of January 2024, Sherene is now booked in for an annual health check with her GP surgery. After a difficult time at work, she has switched teams and is in a different role. A new Carer’s Forum at work is also giving her the opportunity to connect with other carers.
Sherene added: “I do think there needs to be someone with lived experience of being a working carer in Parliament. Someone with the experience of dealing with the physical and emotional aspects of caring, especially whilst working.
“I am a wife and mother who unexpectedly became a carer, who carried out specialist rehabilitation with no physical help, whilst at the same time caring for my children, keeping my family together and keeping a roof over our head. I did all this whilst feeling the shock of what had happened and feeling as though we had been abandoned by our NHS, becoming a family lost in the system. The emotional aspects from our experience may have been extended due to a lack of support that should have been provided.
“There is no voice for carers, The NHS need to look at their policies and follow their NICE guidelines, to put their own theory into practice and follow it through thoroughly”.
Sherene
