Our family consultant, Jess, can help families express concerns and act as an intermediary to improve communication between families and our support teams, ensuring you get the proper support from Discovery.
We created the family consultant role to ensure families are heard at every level of the organisation and beyond.
It is a varied and responsive role, involving quality checking services, supporting local families and bringing a family perspective to Discovery’s strategy, policy development, service improvement and campaigning work.
Jess joined us from the Hft Family Carer Support Service. She has an excellent understanding of the law that ensures the people we support and families know their rights.
Jess is mum to Jude, an autistic boy who is learning disabled, epileptic and registered blind. She draws on her wealth of experience to support families to work with our support workers and management to get the best possible outcomes for their family members. She can guide families on topics like supported living, deputyship, person-centred support and end of life planning. If there is anything that you are uncertain of, uncomfortable with, or curious about, please don’t hesitate to ask.
I have two boys, my firstborn contracted meningitis and sepsis at eight days old. It was touch and go, and whilst he survived, scans showed he had extensive brain injury.
Slowly, we got him breathing independently. Unfortunately, Jude has epilepsy as well, so we had to do first aid training before taking him home. It was all so intense.
It was an entirely different experience from what I expected, and it shapes you.
When Jude was four, he went to a mainstream school because at that age the differences may not be that obvious.
One day, it hit me just how hard it would be to get him what he needed. On my way to collect him, I found him in the corridor with the teacher because he had pulled down a display. When I asked her where his support was, she told me they didn’t have funding for that.
That was my wake-up moment, because I had previously explained the support level he needed.
Everything felt so unfair as I stood there and looked at all these happy parents collecting their happy children.
I kept thinking about how they were probably breastfed at home when we were in intensive care, and now we’re starting our school journey, Jude is already ten steps behind because he’s not getting what he needs.
At that moment, I realised I would have to fight for everything. So I threw myself into understanding as much as I could around the Children and Families Act. I learned about the system through several years of advocacy, working with families, carers, support services, and helping people understand their rights and how to get them. I built up contacts within our local authority and networked to get what Jude needed.
I got some outstanding professionals on my side and ended up with a great support package for my son. But what if people don’t have that? Maybe they don’t have that access, knowledge or fight?
By now I had friends who needed support with their children but weren’t getting it. I encouraged them to push for more because I knew they were well within their rights and I couldn’t stand seeing them not getting what they were entitled to.
I’m not someone who likes “no”, particularly when it shouldn’t be “no”.
There isn’t any fairness in the life of a person with a disability. I’ve been absolutely on my knees many times. We aren’t all given an equal slice of cake. It’s not the way life works. So we can do without the additional injustice where whoever shouts the loudest or pays the most gets the best.
I do always try and be glass half full. But I’d be lying if I said that it’s not hard – because it is hard.
Sometimes it’s not even who has the most knowledge anymore. It’s who can afford the best doctor or solicitor. I always try to be the voice that supports people to get what they’re entitled to and need.
I have a great relationship with my son’s social worker. He keeps in regular contact. And I’ve got that because he knows I won’t back down, but I know people that are getting nothing.
I am straight up. I tell people that if you tell me no, I’m not going to go away, I will look at statutory guidance case law to find why it should be yes.
I’m okay with not being liked if that’s what’s needed because most of the time, you are told no by people who don’t understand why they’re telling you no.
It is not easy to support families who aren’t on the right support package, and it’s not my role to challenge a local authority, but I can support families in making that decision.
When I help someone get the proper support in place, it’s an incredible feeling.
If you think I can help you in any way, don’t hesitate to get in touch with me here.