A lifeline for families on the Isle of Wight

The South Wight Area Youth Partnership (SWAY) works with young people and their families disadvantaged by location, background or circumstances.

SWAY’s support builds self-confidence, self-worth and empowers people to make positive changes in their lives. HIWCF grants have supported SWAY’s work to provide one-to-one support for both parents and young people, as well as running youth groups, activities and events in rural areas they can reach and afford.

Chronic illness can rob a person of the ability to do the things their instinct demands, in the case of a parent like Ellen that only adds frustration and guilt to the constant pain.

Not being able to provide the physical support teenagers Dizzy, 13, and Xander, 20, needed meant her self-worth was ebbing away and her mental health was in decline. Having SWAY in the family’s life has helped turn that around.

Ellen and husband Alex moved from London to Ventnor on the Isle of Wight in 2014 to escape the frenetic pace that was already having an effect on her health. Rejuvenated by life on the island she studied at university in Southampton to become an occupational therapist, a goal she achieved.

But in 2022, just as she started to practice, her physical and mental health declined. She had already fallen prey to Covid, which in turn triggered chronic fatigue on top of already having fibromyalgia and a clutch of other issues.

It left her virtually housebound and, with Alex working and studying away, it thrust her children into the role of young carers. Ellen became increasingly isolated and unable to cope:

“I have a few friends scattered around the island that I made before I went off to university but after Covid, society closed down and I was very isolated and very unwell. So my world just shrank. It’s isolating because it’s hard to reach out to people who knew me when I was functioning. Because I don’t want to display how I feel – like I’m failing life now.”

Her illness came at a critical point in her children’s young lives, they had not long moved to a new home far from their friends in their young teens. “Dizzy has always been a very easy child, at least at home, and the school reports are glowing,” says Ellen. “But it’s because she doesn’t cause any trouble she’s not on anybody’s radar. She’s too shy to ask for help and is an easy target for bullying and being overlooked.”

Xander has been diagnosed with autism and ADHD and being unable to support either of them by taking them out to places and introducing them to their new area took its toll on her own self-esteem. “Both of my kids are extremely sensitive and compassionate and are less likely to tell me something if they think it’s going to worry me,” she says.

“And I didn’t really want my kids to know the extent of how much I felt like I was failing in life, and how I felt like I was failing them. I didn’t want to place that burden on them, they already had the extra burden of helping look after me.”

The turning point came when Dizzy was referred to SWAY’s River Project by her school. It began by helping to nurture her talent for art, which developed into introductions to more of the group’s activities and events.

“It was a godsend because it just took that weight off my heart of feeling like I’m failing her because I couldn’t support her to do these things,” says Ellen. “If my world is small, that shrinks her world too. It gave her opportunities to do things she just wouldn’t have otherwise been able to do in our situation.”

“Just watching her, I could see she just felt a little bit more confident. It’s a little bit less scary when you know you’ve got support, someone to turn to and someone’s checking in with you.”

Just seeing the difference this new support in Dizzy’s life impacted on Ellen. “The fact I knew Dizzy had the support and could see she felt positive about it gave me reassurance that I wasn’t alone with feeling like I was failing her,” she says. “That in itself was so valuable. Having that weight lifted a bit and not feeling like I wasn’t alone in trying to deal with everything was amazing.”

As SWAY got to know Dizzy and her family situation the support extended to the whole family, particularly Ellen. “Lynne, a support worker, and more recently Kathryn, have spent time with me, just as a helpful listening ear,” said Ellen.

Kathryn now visits once or twice a month to chat, listen and suggest courses of action.

“Just having someone here touching base, looking in, not just at me, but at the whole family is hugely reassuring,” says Ellen. “It takes a weight off in a way that’s incalculable in how it can impact the state of mind, the guilt, the worry, the isolation. All of that just decreases when you’ve got someone extra that you know is connected and concerned and will offer different solutions and support.”

One suggestion for bringing the family closer together in an activity that doesn’t require travelling has been joining in a Zoom cooking session with other families. “The whole family would get involved, it would be me, Alex and both kids,” says Ellen. “It was really funny because Dizzy didn’t actually care so much about eating a lot of the foods, but she would get involved.

“It was really great and having it facilitated and supported by SWAY made it an activity that we wouldn’t have otherwise had.”

Kathryn also helped Xander find some direction after finishing college. “He wasn’t sure what to do with himself and the options are very limited here on the island,” says Ellen. “Kathryn came up with a programme that works with young adults to help with life skills and for people like Xander who need that kind of support, something that will help raise confidence and knowledge.

“Xander is over 18 so you would have thought he’d be the last person they’d think of,” says Ellen. “The fact that Kathryn’s still thinking of the whole family and actually offering support is hugely reassuring and has meant so much to me.”

The value of SWAY’s support for Ellen and the family comes not just from its inclusivity but its consistency. “I’m going forward with support in place that is working,” says Ellen.

“There is a sense of security I don’t recall having anywhere else, just knowing that the support that’s working is the support that’s going to stay in place. It’s also adaptable, we figure it out as we go and I just feel lucky to have the support I have.”

“One of the things I love the most is that Kathryn doesn’t come with a clipboard. And a sheaf of directives to tell me how I should be living my life. Or ‘this will make your life better if you just do these things’. When I look in my diary and see that I have a visit scheduled, it just gives me a warm, secure feeling.”