The forum set up to help parent carers

PICTURED: Swansea Parent Carer Forum founder Jo Phillips speaking at The Senedd.

A Swansea group is lending a helping hand to parents who provide round-the-clock care for their children – of any age, including adult sons and daughters.

The Swansea Parent Carer Forum is an independent group that works with local authorities, including Swansea Bay University Health Board, to ensure services meet the needs of disabled children, young people, adults and their families.

An unpaid carer is someone who provides care for a friend or family member without receiving payment from a company or local authority. Unpaid carers can be of any age, and can provide care for people with a range of conditions, including: illness, disability, mental health concerns, addiction, and frailty.

Jo Phillips is a founder member of the forum. She said: “A common misconception is that the son or daughter of the parent is a child – we have someone in our forum who is caring for their son who has just turned 60.

“When people say parent carer, they will presume the person being cared for is young, but that’s not the case.

“Another popular misconception is that parents are said to be doing what is required of them as a parent and looking after their child. But for our members that is not the case – they are giving round the clock, 24-7 care for their child for the rest of their lives.

PICTURED: Jo during her visit to The Senedd.

“It’s very, very difficult and stressful, but the forum was set up to grow, develop and empower our membership to have a strong collective voice and to influence positive change. We want to provide a constructive channel of communication between parent carers and strategic partners.”

Each day in the UK, 12,000 people become unpaid carers, with many across Swansea Bay unaware they are fulfilling the role.

Unpaid carers can perform a variety of tasks, such as helping with everyday tasks, providing personal care, and offering emotional support.

They are the third pillar of our health and social care system, yet many don’t see themselves as carers, often unaware of their legal rights and what they’re entitled to in terms of support and benefits.

Formed five years ago, the Swansea Parent Carer Forum is run by a group of volunteer parent carers, whose children are involved with Children’s Services, Adult Services, Education and Health services.

Jo is a qualified independent advocate and regularly participates in local authority and government consultations on legislation related to social services, additional learning needs and anything that relates to carers.

She is also a mum of three teenagers, one of whom has complex additional needs.

Jo said: “We are a small but passionate group who help shape services - education, social services and health - so that everyone has their needs met in a way that helps them reach their full potential.

“We co-produce and co-design services that meet the needs of disabled children of all ages and their families.

“We don’t have a base for the forum, but we have coffee mornings in the centre where parent carers speak about their experiences and help each other. Word of mouth works very well in this instance because we all have different experiences and advice for each other.”

Read more about the Swansea Parent Carer Forum through their website.