"Alastair is creative, loving and, like many young people, into skateboarding and surfing. He also has complex needs due to his learning disability which means he needs help with personal care, eating and communicating as he is non-verbal. This means when it comes to having a support worker , he needs someone who shares his passions, can get to know him and his non-verbal cues and give him tailored support. Until five years ago, I was doing all of Alastair’s care with support from my husband Adam, 38.

Trying to juggle it with my job as a graphic artist and ensure Alastair got everything he needed was a huge amount of pressure and affected my mental health. In 2018, the local authority assessed us and said Alastair needed 2:1 care, Monday to Friday. Initially we tried an agency who employed trained carers but they sent different people each time and often they didn’t know or understand Alastair so he would get frustrated. On one occasion they sent one of their office staff. I was furious that they would be so dismissive of the support someone with such complex needs would need.

Eventually we found Alastair a fantastic support worker called Jon* and they built an incredible bond over five years. Jon could tell from non-verbal cues what Alastair needed such as if he was thirsty or needed personal care. We self-funded Jon to attend a course to learn symbol-based language so the communication between the two of them was great – which meant Alastair was better understood and his needs met."

But when Jon left the sector in November 2023, we struggled again to recruit new carers, and it took
even longer to support and train them to fully understand Alastair’s needs."

We picked up the gaps in Alastair’s care and now manage a team of six, who provide most but not all of Alastair’s assessed care needs. We are only able to pay minimum wage for this hugely important role due to government funding and have seen people turn to other roles that can pay more. All training is either given or funded by ourselves so the role has no official progression and no chance for career development.

When there are too few staff in social care it’s people like Alastair and our family that suffer. Alastair’s ‘voice’ is often not heard, he has feelings of overwhelm and he misses out on having someone he bonds with who really ‘gets him’ and his needs. The government needs to recognise the important role carers play, how complex the role can be and fund it properly so people get a fairer wage and stay in the sector longer.



*name changed to protect clients identity.