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Milestones Trust

Freedom to speak

Vassall Road's story

Most of all, his autonomy has been restored and his ability to communicate is developing firmly. Since the introduction of the baseball caps over the last ten years, we have not had one single head injury to deal with. He is very pleased with himself over this.

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Vassall Road has been supporting a gentleman for many years. He has, during this time, experienced many medical conditions that have affected his day to day activities in a major way and his quality of life has, at times, been quite poor. He has been prevented from accessing community based activities due to severe epileptic seizures which have presented initially as “drop type” seizures. The nature of these seizures resulted in all kinds of physical injuries from damage to the back of the head and split eyes brows, to hip damage and knee damage. Almost once or twice every week, the home would have some kind of injury to deal with, often finding his bedroom covered in blood from injuries that had happened during the night.

This gentleman chose to stop speaking 40+ years ago and withdrew himself from decision making and interactions with other people to a world where everything was done for him and he didn’t have to interact with people.

As a very stable team who had a great deal of knowledge around this gentleman built up over many years, they felt that something needed to be done to change this person’s lot.  So in 2008, we embarked on a very long journey to turn this person’s life around to a position of communicating, making decisions and enjoying a lifestyle free from injury.

Our overall goal from day one of this planning was agreed and this was that we were going to improve this gentleman’s life experience.

To do this, everyone felt that reducing the head injuries was the first step and possibly the most important. The Consultant Psychologist was fully on board with our plan and has since recommended the equipment used to others.

The home obtained safety headwear used by scaffolders known as “bump caps.” These protect a person’s head from walking into things. These are not hard industrial type hats but more of a baseball cap with internal plastic skull protection that also included a hardened visor providing protection to the eyes and face. These hats come in several colours and are quite fashionable so were easy for this gentleman to wear. Immediately, this gentleman took to them and within one week, head injuries dropped to almost zero.

Because staff were no longer dealing with incidents, it became possible to identify when these drop type seizures were likely to occur. To facilitate evaluation, the home designed and implemented a recording system that clearly identified what type of seizures were taking place, what the gentleman was doing at the time, how it had affected him and what type of injuries were happening. A picture of what was actually happening soon emerged and a pattern could be identified. During this time, the gentleman’s lifestyle improved and so did his desire to communicate and he began to speak, much to everyone’s delight. His confidence around decision making moved from strength to strength. His family were over the moon. The bond between the family and home are now stronger than ever.

From the information obtained, the home was able to provide the community psychology team with precise information never before obtained around these seizures and gradual medication changes have been implemented. This has meant some periods of hit and miss, as is often the case with anti-epileptic medication, especially when being unable to obtain blood samples or MRI type scans. During the last ten years, a great deal of liaison with several hospitals around obtaining blood samples and sharing information has been achieved. This has enabled more medication hits than misses of late and changes are now less frequent and more helpful.

Today, ten years down the line, this gentleman no longer experiences drop seizures. He is making decisions about his own life and enjoys a lifestyle based around fishing with his brother, canal boat holidays, and regular cinema visits to see movies of his choice (often zombie type). Most of all, his autonomy has been restored and his ability to communicate is developing firmly. Since the introduction of the baseball caps over the last ten years, we have not had one single head injury to deal with. He is very pleased with himself over this as he showed a great deal of commitment to wearing them,  to the point of deciding recently that he no longer needed them and has stopped wearing them altogether, successfully!