I went to an interesting and well-organised conference last week which focused on services for carers of people with MS. A whole range of organisations were represented and I went along as I trained as an MS Society support volunteer. I am passionate about newly-diagnosed people and their families having access to services and groups and my role is to signpost them and provide a friendly ear, as someone who has been through the system.
We all met for registration, coffee, croissants and a catch up then went through to the conference. There were some brilliant talks and insights and so far, so good. Then something happened which had me in bits. A very young teenager took to the stage to explain what it was like to be a young carer for her mum, who has MS.
Halfway through speaking, the girl was overwhelmed with emotion and began to cry. The entire room was hushed and stunned. Although she seemed to be supported by some charities, it was clear this was a girl in danger of a nervous breakdown. She went to school after helping her mum and worried the whole day about whether she had fallen or was in need of help. She had been bullied at school too, which research shows happens to almost 70% of young carers. There are 175,000 young carers in the UK, with 13,000 of them caring for over 50 hours a week.
Like most newly-diagnosed people, I was horrified at the thought of my son becoming my carer, and touch wood, I am lucky. I don’t need to ask him for help and although he is aware a I have good days and bad days, I get along with support from my family and friends. With the Alemtuzumab treatment I had, I will probably not need ‘care’ for the foreseeable future, if at all.
The girl’s dignity and courage was astounding and I hope hearing her plight will spur others to find her more help. Four days on from the conference, she remains in my mind. I feel churlish complaining about my tiredness or weak arms.
If anyone knows a young carer, please reach out. They need care too.