Children's Case Study 1

Child with cerebral palsy and highly complex needs

Harvey is a 6 year old boy with severe dystonic cerebral palsy as a result of an accident at birth.  His needs are highly complex and extensive. He requires assistance with every aspect of his life, from managing personal care to communication and feeding.

Harvey is part of a loving and committed family.  However, the high level of care and input he requires often means they are unable to carry out other family duties and have no time for themselves.

He is fully dependent on others to meet all of his needs.  He has severe extensor thrust and involuntary movements, along with poor head and trunk control, no sitting balance, and the inability to control any independent movement. He has many health issues and is often unwell.

After becoming involved with Harvey and his family it was immediately apparent to us that there was a huge discrepancy between the level of his care and therapy at school during term time and how little the family were receiving in the way of support at home.

Our first priority was to look at relieving some of the immediate pressures on the family, very quickly arranging various support services and providing care through an agency. As time has gone on we have recruited a care team directly and trained them to deliver the specialist care that Harvey needs.

As Harvey's needs are so complex, an important part of our role has been liaising with the wide range of professionals involved, establishing good working relationships, and helping to integrate care and therapy between the school and home environments. We have gradually commissioned a wide range of services and therapists to work with Harvey at home.

His equipment needs are extensive, including a variety of static and mobile seating systems, a number of wheelchairs and buggies, positioning equipment for day and night, standing frames, hoists, toileting systems and showering equipment. We have commissioned a number of specialists to help us get the right equipment for Harvey.

Alongside this we have been involved in sourcing new accommodation and advising on adaptations, helping to assess for new assistive technology and communication devices, and advising on play and leisure, to name but a few.

We continue to provide a significant amount of case management for Harvey and his family.