Guest blog: Ruth, what advocacy means to me as a young person

Why do we have Advocacy Awareness Week?

Up until recently I didn’t know what advocacy meant. Unfortunately, due to this I missed out on the opportunity to have advocacy support in hospital. With an advocate I could have shortened my in- patient stay and moved to a less restrictive placement. However, I was worried that having an advocate could lead to my stay lengthening, so I refused one. Now knowing what advocacy is, I would have taken them up on that offer and looking back, would probably have transferred down from a PICU to a less secure ward. This would have been very helpful as it was an unsuitable environment and when they did come to the review, the professionals noted I could have moved earlier.

This is why Advocacy Awareness Week is so important, as a lot of young people don’t understand what an advocate is and the difference they can make, especially for anyone with additional support needs, which may lead to asking for reasonable adjustments. A lot of professionals don’t know about advocacy services in their areas, who is eligible and what approach they use. They can even feel threatened by them, as it can challenge current practice.

What does Advocacy mean to me?

Advocacy means getting support from another person to help you express your views and wishes, and help you stand up for your rights. Find out more on NDTi’s Advocacy Charter.

There are lots of different types of advocacy which are all important and can work together to improve a person’s quality of life. I am going to talk about advocacy for children and young people in this blog.

I’ve experienced support from a professional advocate in Care, Education and Treatment (CETR) reviews. In one of the meetings, having heard what I was struggling with and needed, the outcome led to offering me an alternative option to being an inpatient, providing short break for a fortnight, which protected me and helped me to recover. This is now part of my support plan for when I am struggling.

Informal advocacy is the advocacy that your family, friends or supporters provide. I have had amazing informal advocacy through my mother’s support. While working at a new job, I had a panic attack. This was handled very poorly and caused great anxiety about going back to work. Through my mum’s help, I managed to book a meeting with two line managers. My mum helped me prepare for the meeting and then supported me when they repeatedly blamed me for not asking for reasonable adjustments, even though I didn’t know I could ask for them. My mum pointed this out to the manager and stood up for my rights that they should not have taken my phone from me, when I was panicking. Friends and learning support assistants have encouraged me to challenge things that have limited my opportunities and to highlight discrimination, even when it has been difficult.

Lots of people can advocate for themselves. This can be as simple as asking for small changes that are reasonable adjustments or providing feedback to someone about their practice. For example, I had to self-advocate when I had a GP who insisted that I look at him when he spoke to me. No, this was not about an eye test! “I need you to look at me for me to have a conversation with you.” Given I am autistic and have anxiety I found this very stressful and challenging. My mother had already phoned to say I was very nervous about attending the clinic and it was in my notes that I have a diagnosis. I self-advocated by explaining I really struggle to do this and later that I had autism and this was putting a real pressure on me. When home, with the help from my mum, I wrote a letter to the GP practice and included links to training about autism and offered to come and talk to the staff. I received a very positive letter back with strong apology and commitment to learn from this mistake. Through this, I hope I have made the experiences better for other autistic people. I would like to believe that future patients who struggle with eye contact didn’t have to face the same ignorance that I did and could comfortably talk to their GP.

Something I think is important to understand is that advocacy is not about presenting what’s in the best interests for someone, it is about putting forward their voice. So even if the advocate doesn’t agree with what the person says, their role is to ensure their viewpoint is heard and to present options and what someone is entitled to.

Advocates can help young people to work out what they do think and feel and help them navigate difficult situations or processes. When advocating for ourselves, we are not just impacting our own lives, but increasing other people’s understanding and making a difference for the future experience and options of others.

What difference does advocacy make?

Advocacy can make a huge difference.

• Increased confidence and self esteem
• Greater independence
• Having more choice and control
• Feeling safer and more secure
• Improved health and wellbeing
• Better mental health
• More time being given to consider options and decisions

Ruth is supported by NDTi’s Time to Talk Next Steps programme which supports young people aged 16-25 with additional needs to build confidence and make plans for the future.

As part of the programme Ruth is now co-designing training for professionals and is part of a steering group to advise on the project. They are also keen to make sure other young people know how they can benefit from advocacy.