Pam Fry, CEO and director of PlayWise, reflects on the Sutton organisation’s annual day out at the seaside. “Our trip to Littlehampton was the most incredible day. We had more than 100 people.
“Everyone was calm and relaxed, and we had a lot of firsts; the first time a child put their feet in the water or ate fish and chips or wore flip flops. Those little things can be huge, because being a parent of a child with additional needs can be really, really tough.”
PlayWise launched in April 2019. It was born out of the Sutton Portage Service, which has been offering a specialist home visiting education service to preschoolers in Sutton for four decades.
“We break down learning into really small steps. We make learning fun and accessible.”
“We work with some of the most disabled children in the borough,” says Pam. “We break down learning into really small steps. We make learning fun and accessible.”
The Portage service ends when children reach three years of age, which was leaving some parents of disabled children without vital support. In response, Pam and fellow director Yvonne Charalambous worked closely with Sutton Council to expand the Portage service. They created PlayWise, a not-for-profit organisation that delivers portage along with a range of other interventions for families of children aged up to eight years.
Says Pam: “It has given us the flexibility to deliver more bespoke support for families and a lot more choice. We’ve got a beautiful family hub, we deliver training and workshops, we work with schools and nurseries and run parenting support programmes. We offer community groups and provide hands-on teaching for families. Plus, we offer yoga for parents, trips like Littlehampton and a five-day grotto at Christmas, which is the most incredible experience.”
We know how devastating it can be for a family to receive a diagnosis for their child.”
The flexible approach means PlayWise can respond to identified needs. Pam explains: “If families are saying there is a gap or more support is needed, we can look for funding and set up services. Our post-diagnosis support programme, Moving on Together, is an example of this. We know how devastating it can be for a family to receive a diagnosis for their child. Waiting lists can be very difficult, but families often get the diagnosis then don’t know where to go for support.
“We designed a package of support for 25 families a year in collaboration with the charity Home Start and with funding from Sutton Council. At the point of diagnosis, a family can be referred to our programme and receive visits from our project worker, who will support them at appointments, give them accurate and safe information about their diagnosis and help them with form-filling. We make sure they’re linked into the appropriate services and benefits and connect them with a Home Start volunteer.”
That volunteer is likely to be a parent of a child with a disability, offering the best type of peer support. Families also receive a year’s membership of PlayWise, with access to training and workshops and the chance to develop a network of parents, who are on a similar journey to themselves.
Much of the success of PlayWise is down to its collaborations with other organisations. Says Pam, “We have incredible partnerships with paediatricians, speech and language therapists, occupational therapists, physiotherapists, dieticians and our early years team.
“We have fortnightly meetings to discuss cases coming through that help us to plan support for each family. We recognise that families have so many appointments to manage. Having to repeat their story to so many different professionals can be really challenging, so we use joint visits to reduce that.”
Pam has worked with children who have additional needs since the age of 18, when she cared for an autistic child, whose family found it hard to accept her diagnosis.
“I knew that I didn’t want any family to ever again be in a position where they didn’t feel able to tell me about their daughter’s needs or felt embarrassed about their child’s behaviour. Ever since that family, I’ve worked with children with developmental delays and I wouldn’t have it any other way. It is my passion.”
When working with young disabled children, and looking at the bigger picture, it’s so important that we celebrate all the successes, even though the steps may seem small at times. “
Talking about her role, Pam’s enthusiasm and positivity shines through. “In the PlayWise team, we’re all about positivity. When working with young disabled children, and looking at the bigger picture, it’s so important that we celebrate all the successes, even though the steps may seem small at times. Parents need to see and hear the things that are going well and how their child is making progress. There are always amazing things to celebrate.”
Find out more on the PlayWise website.
Karen’s story
Karen’s son Tadgh was diagnosed with focal epilepsy as a young baby. He was seizure-free for 18 months but in July 2022 they unexpectedly started again and were not as before. As Karen explains: “He was having 40 or 50 seizures a day for months, throughout the day and night. He lost control of the right side of his body; he lost a lot of his speech and he couldn’t walk properly.
“We didn’t know what to do as a family. All our services had finished as he’d been seizure free for such a long time. I contacted Pam in desperation. I remember just calling her in tears. She came to see us at home and recommended the post diagnosis service, Moving on Together.
The family was introduced to Fran, a post diagnosis support worker. “She was like a breath of fresh air and became a voice for us all to be heard,” says Karen.
Tadgh was due to start reception that September. PlayWise liaised with the school and healthcare professionals to make sure, that Tadgh, and the whole family were supported. “They made us feel like everything was going to be ok,” says Karen.
Fran referred the family to other services, including for occupational therapy, short breaks and home adaptions. She was on hand to help fill out any forms including a grant application for a buggy as Tadgh had so much pain in his legs and was exhausted.
“It was such a difficult time for us as a family but having someone there to guide you through and keep you going made a massive impact,” says Karen. “They really were a shining light through such a dark and scary time for us all.”