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Brain injury case management

Building a life-changing network of support

Breakthrough Case Management trace the story of Aidan’s rehab journey and the life-changing impact of the MDT

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How Breakthrough Case Management were able to transform the lives of Aidan and his family through assembling a team which has enabled new levels of support and rehabilitation

 

As a case manager with extensive experience in brain and spinal injury, when Catrin May was first approached by Asha Beswetherick of Enable Law, to interview as a potential case manager for Aidan, (at the time, an 11-year-old child), she was naturally happy to be asked for her input.

However, as in most complex injury cases, she was under no illusion that the road ahead would be a smooth one.

Aidan had been born at 33 weeks gestation with the umbilical cord around his neck, resulting in an hypoxic brain injury and a subsequent diagnosis of Cerebral Palsy.

Cerebral Palsy is a neurological condition caused by brain damage either before or during birth. Potential issues a child might face include movement and walking disabilities; speech difficulties; learning disabilities; cognitive impairments; hearing or vision loss; epilepsy; emotional and behavioural challenges; spinal deformities; joint problems and more.

“For years,” Catrin explains, “Aidan’s mother had felt that she was in some way responsible for her child’s injury and was frightened that if she made a claim, it would be proved to be her fault. 

“Aidan’s father however, felt sure that it had been negligence and reassured Aidan’s mother, ultimately convincing her that litigation was the right thing to do for Aidan.”

Even once the family had made the decision to pursue the claim, Aidan’s mother Krissy had reservations about engaging a case manager to assist them through the process, concerned that she may lose control and not have a say in her son’s rehabilitation.

With a background as a Registered General Nurse, co-founder and director of Breakthrough Case Management, Catrin has over 15 years of case management experience and understands the impact traumatic injury has on the whole family.

She is known for her compassionate, common sense approach and a focus on the importance of collaborative work with clients, their families and clinical professionals.

“I would be being dishonest if I said I wasn’t concerned by the fact that Aidan and his family had had so little support outside of his family throughout his formative years” says Catrin.

“Ideally, in cerebral palsy cases, as with any complex brain injury, we would be looking to get a rehab programme in place as soon as possible after the index event. However, Aidan was 11 years old at the time I met him and his family. He was attending mainstream school and input from statutory services had been minimal, to say the least.”

At the time, Aidan and his family; mum, stepdad and sister, were living in a house with an adapted downstairs bathroom, but his bedroom was upstairs.

“When I first met Aidan, he was able to walk a few steps but needed to be supported by either a walker or another person,” says Catrin. 

“His mobility was very poor. He wasn’t able to sit up in a chair. He had a wheelchair, but it was too small for him.

“Aidan’s accommodation really wasn’t suitable for his needs; there was no hoist, despite Aidan being tall, his parents were carrying him, up and downstairs themselves, morning and night.

“He has such a lovely family, (he also has a good relationship with his father) and their love and care for him was evident the moment we met. However, the situation was just not sustainable.”

When Catrin met Aidan, he was unable to drink out of a glass. He would use a straw but would make a mess when drinking and his choking risk was high. When eating food, Aidan would gag, and his mother would always have a bag at the ready.

“You can imagine that this made it incredibly difficult for the family to dine out, and so, often, they just didn’t,” says Catrin.

Although Aidan’s family were able to work out what he wanted, Catrin remembers being completely unable to understand his speech when they first met.

“As obvious as the need was for physio and occupational therapy, I knew immediately that we also needed to involve a Speech and Language Therapist as soon as possible,” says Catrin.

It was important that it was someone who would give Aidan a sensory oromotor programme.

“At Breakthrough, we see our role as case managers as facilitators for partnership working, and this was certainly the case in this instance,” says Catrin. 

“Here was this lovely boy with a wonderfully supportive family doing their very best in a difficult situation. I was so eager to get the proper support in place for Aidan as soon as possible and start building the team that would come together to make a real difference to this boy and his family’s life.”

With many years of case management experience and well-established connections in the field of rehabilitation, Catrin was quickly able to put together a team of therapists and clinicians best suited to Aidan’s needs.

Catrin got in touch with Sarah Chatterton, Speech and Language Therapist, who started a sensory oromotor programme with Aidan that included a comprehensive exercise plan, practised five days a week with additional exercises at weekends. This quickly started to address his difficulties with eating and drinking independently.

At the same time Sarah also worked on Aidan’s speech using an ‘oral placement’ approach to develop more accurate lip and tongue positions for individual speech sounds, along with transitions between speech sounds in words, phrases. sentences and conversation.

“Aidan and Krissy have been a joy to work with,” says Sarah.

“The success of the SLT programmes was wholly due to the practice that took place on a near-daily basis. Both Krissy and Aiden worked incredibly hard together to achieve the positive outcomes, both with eating and drinking and with Aiden’s improved speech clarity.”

Alongside speech and language therapy, Catrin engaged an Occupational Therapist to review Aidan’s equipment. Having worked extensively with Gina Joslin in the past, she knew that the OT was well placed to make the necessary assessments and recommendations and ensure that Aidan had access to the very best assistive equipment.

“I knew Gina would be able to help improve Aidan’s posture and level of comfort and in turn, give him the greatest level of independence going forward,” says Catrin.

“Aidan and his mother were both encouraged to be actively involved with my assessment and decision making process so that they fully understood the goals the therapy team were aiming for,” explains Gina.

“With the correct equipment – manual wheelchair, powered wheelchair, walker and a supportive easy chair, Aidan’s posture, breathing and speech improved dramatically.”

It was also clear to Catrin that Aidan needed a comprehensive physiotherapy programme.

“I’ve worked a lot with Alison Fedeli in the past and I knew she would be a great physiotherapist for Aidan,” explains Catrin.

“Being a case manager is so often about matching clients with the most appropriate or effective therapist for the client’s situation.”

Alison says she found Aidan ‘delightful’ to work with, noting: “He is always willing to carry out his physiotherapy exercises and tries his best. Asha and Catrin helped him to set up a home therapy room and he has worked hard to strengthen his back, shoulders and legs. Aidan has gradually improved his posture, balance, walking and stamina.”

Aidan was very engaged in all of his therapy programmes from the outset and thanks to his efforts and the encouragement and support of his family, a lot has changed for the family in eight years.

Aidan and his family now live in a fully adapted home, featuring wide corridors for his wheelchair, a lift (Disney themed, which as Catrin notes, was ‘very important’), hoists, specialist bath and shower. Aidan can move independently within the home and access all areas without the assistance of his family.

Today, Aidan cycles at home daily and goes to the gym twice a week and also exercises in water.

His physiotherapist Alison explains that he is “encouraged to continue to work hard to keep the great gains he has made,” noting that it is “great to see how much he loves attending college and work experience. With improved mobility he can join in with fun activities and chat with his friends.”

Aidan is able to walk independently for short distances and sits up straight without support. 

Now able to eat without gagging and to drink from a glass, the family regularly go out to eat together. In fact, they recently took a family holiday to Disney World in Florida.

Aidan loves rugby and is a big Exeter Chiefs fan.

“When I speak with Aidan today, he can tell me his news and I understand everything he says,” says Catrin, with a smile.

“He has a lot to say! He’s a happy, funny, positive person. Working with him and his family has been an absolute joy.

“Aidan was late getting the full rehabilitation programme he needed, it is always beneficial to start rehab as soon as possible, however Aidan proves that big improvements can be achieved later on if you have the right rehab team in place.” 

Asha Beswetherick, of Enable Law agrees.

“The transformation I have seen in Aidan since acting as his Deputy, alongside Catrin as case manager, has been phenomenal,” she says. 

“From being able to access equipment and therapies, having the right wheelchair to, what has probably been the most significant change, moving into his newly adapted home where Aidan has the space and facilities to support all his needs.

“As Deputy, I know Aidan’s needs will change as he continues through his adult years but with the support of his family and an excellent case manager, he has a supportive team around him that certainly makes all the difference in making decisions on his behalf.”

“Catrin is amazing. She gets me everything I need and want. I love talking to her,” says Aidan, who is well known at Breakthrough Case Management for his positive outlook and his incredible smile.

“We love to receive photos from Aidan; whether it’s a family holiday photo, an outing to the rugby, a Christmas snap with his dog, or an update on his new garden ‘bar’ – it always features that smile,” says Catrin.

Krissy, Aidan’s mum is delighted with the impact Catrin’s input has made on her son’s and her family’s life. 

When asked what she would say to another family in the same situation being offered a case manager, Krissy explains: “When he was 11, I said I did not need a case manager.

“Now, I say I couldn’t be without one.”

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