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Seth is 6 years old and has been at school at Chailey Heritage Foundation since September 2021. Seth has a variety of complex needs including Congenital Myopathy (a muscle disorder), and significant hypotonia (low muscle tone). Seth also has a permanent tracheostomy for ventilation and all respiratory management as he is unable to breathe independently.  

For young people like Seth who have high health needs, many can become passive recipients of care, never having the opportunity to attempt or try to do anything for themselves. At Chailey Heritage Foundation, the dedicated teams supporting young people like Seth work hard to find ways to give back autonomy and independence.  

For Seth, this is realised through having access to specialist services, activities and equipment that puts him in control and helps him to make his own decisions.  

Among the vast range of activities Seth enjoys, one of his favourites is hydrotherapy. The warm, weightless pool environment is perfect for him to explore movement and use his body in ways that are tricky for him out of the water. It is a true team effort and is a fitting example of where our NHS partnership with Chailey Clinical Services really benefits the young people, as being fully ventilated, Seth needs both physiotherapists and nurses present in the pool. Together, the team coordinates sessions safely keeping his ventilator dry on a trolley by the pool side and moving it alongside Seth on wheels while he exercises.  

In addition to hydrotherapy, the benefits Seth experiences from other services and activities including rebound therapy, bike riding, box sitting, power driving and using the innowalk mean that he can now support his own head, which he was unable to do when he first joined Chailey Heritage Foundation. He is even able to nod and shake his head, giving clear ‘yes’ and ‘no’ responses to those who help to support him, putting him in control of communicating with those around him.  

“All of our services contribute towards giving the young people a sense of individuality and independence, putting them in control rather than always being passive recipients of care. The benefits are cyclical, the more exercise and activities they enjoy, the more cognitively able and receptive they are in the classroom and vice versa.”  

(Julie Tilbury, Seth’s teacher).  

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