Julie Gennery: The importance of BSL when arranging my husband’s 24-hour care (BSL)

Needing 24 hour care is quite a massive change in anyone’s life who finds themselves in such a situation. Needing 24 hour care when you are profoundly Deaf and a BSL user is quite another matter and adds further complexities.

My husband Matthew has advanced MS and for the last 15 years has needed full time care. Finding carers is not easy as essential qualities are commitment, reliability, flexibility, a caring and kind disposition, willingness to adapt to ever changing situations…the list goes on.

When you add into the mix that they must also be BSL users, this adds another layer to qualities required and the availability of people with all of these qualities is extremely rare.

However, Matthew now has a team of BSL users and he is in a quite unique position of having such a great team.

The journey leading up to this, was not always easy. Having had carers who where non BSL users, this led to misunderstandings, frustration and a general breakdown of communication. Being severely disabled, the last thing you want is to have a huge struggle trying to communicate your basic needs.

His team consists of 6 people, all who have the ability to communicate with him and who can deliver his care in a safe, efficient, informative way.

The team is made up of 4 Deaf native BSL users and also a hearing carer who has been learning BSL. Additionally, I am Matthew’s primary carer and I am a BSL interpreter.

I am so proud to have secured this team who not only provide round the clock care to Matthew but can communicate with him.

Things that hearing people take for granted, from asking for something to having a chit chat, from a simple ‘good morning’ to talking about what has been on TV, what you plan on doing that day, having a giggle to more important things such as stating you are in pain or discomfort. Communication on all levels is vital for everyone. It’s not just part of who we are, it is a necessary ingredient to being able to survive and thrive.

It is a rare situation to be both a Deaf BSL user and also needing 24 hour care. It is even a more rare situation to have a team of carers who can provide the correct level of care and can meet these needs. So our gratitude goes to the amazing team that we have.

Matthew’s life is as fulfilling as it is due to the care that is provided to him. Living with advanced MS is extremely difficult. Every single thing has to be done for Matthew as apart from a little movement still left in his right arm and some movement in his head and neck, he is totally paralysed requiring complex care.

However, Matthew has a good quality of life, he goes out, goes on holidays, enjoys family life and remains positive and happy. The team of carers that he has means that he can interact at all times and communication is never a problem.

Whilst it is never easy as our house is always full of people, with little privacy, I am extremely grateful to the team for the care provided. I am, of course, very proud of Matthew who never lets his disability stop him enjoying life. He is always positive and has a great outlook on life. I am so proud of him and the team.

My name is Julie Gennery and I am 55 years old. I have been married to Matthew for 23 years. Matthew is a profoundly Deaf BSL user and at the age of 18 became disabled due to Multiple Sclerosis. As well as being his carer, I work as a freelance BSL/English interpreter, covering most of Lincolnshire. To enable me to work, I have a team of carers who are all BSL users, who deliver Matthew’s care and provide daily living support. Without this support I would not have the freedom to work as Matthew now requires 24 hour care and has done for many years.