Jakub is a cheeky, charismatic young man whose energy lights up the room. He’s been supported by our Children’s Complex Care team since he was just four years old.

Nine years later, Jakub and his family have built incredible bonds with his support team, which have been important in his progression. Jakub’s journey has been full of positive progress and both he and his family credit this to their Children’s Complex Care team.

Jakub was born with VACTERL association, a disorder that stands for vertebral defects, anal atresia, cardiac defects, tracheoesophageal fistula, renal anomalies, and limb abnormalities. It affects multiple body systems, meaning Jakub requires 24/7 care.

Through our person-centred approach, Jakub’s support team have developed a support plan tailored to his unique needs, that’s centred around his goals and aspirations. With regular reviews and a collaborative approach, Jakub’s confidence has soared! He’s quickly smashing his goals and achieving things his family once thought would be impossible!

The importance of the right support team

Jakub’s condition is likely the result of being born prematurely, and he needs a tracheostomy too, which supports him with his breathing. This means Jakub is non-verbal and relies on other methods of communication.

But the health complications don’t stop there.

Jakub has a JEJ feeding tube, where he is fed into his small intestine as his stomach cannot hold fluids due to reflux, which puts him at risk of aspiration. This means he is on a continuous feed, with small volumes continuously delivered throughout the day.

Jakub also has a suprapubic catheter, to help him go to the toilet. Due to these various complex needs, Jakub needs constant supervision to ensure he’s healthy, happy, and safe at all times.

With the support of our expertly trained Healthcare Assistants, Jakub and his family are reassured his needs and happiness are supported round-the-clock.

Overnight, he has a team of up to four Healthcare Assistants monitoring his needs. This allows his family to rest, reassured that Jakub is being supported. They observe Jakub during the night, ensure he’s getting his feeds and help maintain his tracheostomy. Jakub also receives day support from his team five days a week. His personal Healthcare Assistant, Murdell, and some additional Healthcare Assistants provide essential support that empowers him to do all the things he loves!

They support him with activities like physiotherapy, fun activities at home, playing games, and developing his skills. They also manage his healthcare needs, including his airways, feeding and anything else he needs.

For Jakub, adapting to new members of his household has been a breeze. Naturally sociable, he’s has developed a strong relationship with all of his support workers!

Developing a personalised care plan  

Using a person-centred approach, Jakub’s support is tailored to his individual needs, interests and hobbies. His bespoke care plan is co-created by Sanya, his Clinical Case Manager at Children’s Complex Care, his family and his carers.

Together, they frequently review Jakub’s support, adjusting it to meet his evolving needs as he grows and makes progress. Discussing everything from his needs, his routine and how he likes things done, to his feeding regimes and medication charts, Jakub’s wellbeing is always a priority. This is done yearly, however, if during the year a big event happens such as having his tracheostomy upsized, this will be reviewed then too, ensuring he is always receiving the correct care.

For example, Jakub experiences a lot of anxiety during his tracheostomy changes. His care plan is tailored to ensure he is made to feel as comfortable as possible. Keeping his emotional wellbeing in mind, his team will slowly remind him when a tracheostomy change is coming up, letting him know when it is two weeks away, one week away, five days away and so on.

Then, on the day of the change, his team of Healthcare Assistants will come in and change his tracheostomy straight away, avoiding any conversation with him. This is how he likes it to be done, and it reduces his anxiety. Without notice of a change like this, Jakub can become quite distressed, leading him to become short of breath quickly which can be a danger to his health and wellbeing, especially while changing his breathing tube.

Our team also ensure they include Jakub when developing his care plan. Like any 13-year-old boy, Jakub’s strong-willed and quickly becoming master of his universe! He has strong opinions, excellent decision-making skills and loves to be heard!

Although he’s non-verbal, Jakub has a strong way of communicating with his family and his team. He creatively communicates his likes and dislikes, as well as his favourite toys and games. Like everyone, he can become frustrated at times. But by getting to know him as an individual, his team have established how to calm him in scenarios where this is needed. By honouring his preferences, they ensure Jakub’s receiving truly person-centred care.

Creating lasting bonds

Over the years, Jakub and his team have built strong relationships. They have watched him grow since he was four years old, supporting him to become a strong, independent teenager! Murdell, his personal Healthcare Assistant, has been with Jakub since the start and they have built an extremely close relationship.

Even though they now seamlessly navigate their days together, it hasn’t always been smooth sailing for Jakub and Murdell. When Murdell first met Jakub, she struggled to communicate with him. But by taking time to get to know him as an individual and using person-centred support, that has changed.

Over the years, she’s found new, creative ways to communicate with him. Now, Murdell can have conversations with Jakub, and even enjoys light-hearted banter with him!

To develop their understanding of each other, Murdell uses Jakub’s iPad and certain toys as communication tools with him. Jakub shows Murdell an object, and she types it into the iPad, showing Jakub the images. He points to different images to communicate what he wants to say. As the years have gone on, Jakub is learning to say more single words that help Murdell to know exactly what he means!

But it’s not just Murdell that Jakub loves! He benefits from a diverse support team with a range of different backgrounds, and experiences. They all bring different skills to the table and give him a glimpse into life outside of London! With them, Jakub explores new cultures and traditions, all while forging relationships built on trust and understanding.

Achieving new goals!

Since Jakub has been receiving our support, his development has been amazing. His communication skills have come a long way. Even though he’s non-verbal, he can now express a few selected words! And he doesn’t shy away from vocalising his thoughts and feelings!

In the community, Jakub has a fantastic physiotherapy team who provide him with detailed care plans for our team to incorporate into his daily routine. His physical development has also come a long way because of this!

With a focus on his physio, his team have supported him to sit up and stand. By doing this, Jakub’s gained the strength to venture out of his home to explore the world and experience new things!

When we first met Jakub, he wasn’t able to sit up by himself and was taking 12 different medications. Now, Jakub takes just one form of medication and can sit up by himself. This is a huge achievement for him as he loves to be independent and to feel empowered!

With his new-found strength in his hands and legs, he’s slowly learning how to stand without support too. He even kicks his leg and loves to kick a ball round! But his ultimate goal is to walk and run around as independently as possible.

With what he’s already achieved since being supported by Murdell, Sanya and the whole team at Children’s Complex Care, we have no doubt he will get there!

Find out more about Children’s Complex Care!

Our Children’s Complex Care team help families like Jakub’s navigate caring for a child with complex needs every day. If your child, young person or client would benefit from specialist care at home, get in touch by filling out our quick form.

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