Carrie Grant is best known as a TV presenter, voice coach and the wife of 1980s pop star David.

But fans may not be aware that she is heavily involved in the health sector.

She is a mum to four children with special needs – Olivia, 22, an actor, with ADHD; Talia, 15, who has Asperger’s and battles depression; 11-year-old Imogen, who has ADHD and autism; and Nathan, seven, who has ADHD and receives treatment for attachment issues.

Carrie, 51, lives with Crohn’s Disease and sits on the UK’s largest Health Commissioning Panel representing Mental Health and Learning Disability.

She is also Patient Lead for the College Of Medicine, and more recently hosted the Chief Nursing Officer (CNO) for England’s Summit.

 

When did you start to highlight health issues?

I think it was just a few years into my Crohn’s journey. I got it in 1983 and was diagnosed in 1986. In the mid-90s I really became interested in how people like me could manage life with a chronic condition.

I began speaking at health conferences, and I always said that if I got any success in my TV and singing work, I would speak out about what was happening to me, because it can be quite an embarrassing disease.

When I did Fame Academy for the BBC, just about every interview I gave, I mentioned Crohn’s Disease. I talked about my bum all the time!

 

How did you manage your condition while you were on tV?

I was on a drink which was prescribed for me, that I could live on for days at a time. For the entire 13 weeks that I was a coach on Fame Academy, I only consumed that drink because it prevented me having to go to hospital.

It’s the sort of stuff they give to people going into space – with all the nutrients the body needs. But you have to be incredibly disciplined to stay on it.

The first few times I tried it, I wanted to eat the walls.

 

What made you become more involved in the health sector?

Giving interviews about my condition meant the medical world became interested in me, and I was asked to chair a debate in Brussels on sustainability in health. Once I started hearing the argument – about every stakeholder getting involved in their own care – I became very interested in how patients could become leaders in managing their health journey.

Not everyone will be able to do that, of course. But when GPs, consultants, nurses, etc meet with a patient they often just see the disease or the illness. We become sheep, defining ourselves as sick people and putting all of our hopes and expectations on those who treat us.

But as a patient, I have skills and assets to bring to the treatment process. I don’t need to be defined simply by my disease. I am a good leader, I know what works for me. And after living with a chronic disease for a number of years I can play a leading role in my treatment.

 

How can patients become health leaders?

At the CNO Summit we saw work that was going on in Holland, where a man having kidney dialysis said “Why can’t I do this myself?” A wing was built in a hospital where dialysis patients gained access via a keycard and could hook themselves up and do their own dialysis. This meant that a lot of nurses and consultants and specialists were free to go and focus on more critical care.

 

Can everyone be in charge of their own treatment?

No, but as a chronic long term condition model, this works. Something like 30% of people over the age of 15 in Europe have a chronic condition. We need to start teaching them the concept of taking the lead in their health.

I spent lots of time in hospital in my 20s, but the specialist nurses really empowered me. They spoke my language – whereas the consultant didn’t seem to understand me at all. When I felt listened to, that made all the difference.

 

You are interested in mental health issues too. How did that come about?

I have four children with special educational needs. Only 25% of children and young people referred to CAMHS (Children and Adolescent Mental Health Services) get an appointment. That poses the question “What is happening to the other 75%?”

By 2022 it is hoped to get appointments for 33%, but that still leaves two thirds of children not getting the help they need.

What happens is that many will self harm or attempt suicide – and in that crisis moment, the whole team arrives. Why can’t they be there sooner?

 

How has your family been affected by this?

My child has been on suicide watch five times in 18 months, and it’s costing money for her to be an inpatient.

I think we are sitting on a Tsunami of mental health difficulties, yet CAMHS are having their budgets taken away.

 

So what can be done?

We need to involve schools. We have to get parents involved. It’s all about being a joined up society.

Is one-hour of counselling a week enough for young people with mental health issues? For the other six days and 23 hours of the week, we as a family are responsible for providing critical care.

People shouldn’t be in crisis before they are given access to the services they need. I don’t think change can happen just by asking for more funding for services – everyone involved in the young person’s life should be working together.

 

Do you mind putting yourself in the spotlight?

I think that fame is a currency. I could choose to spend that on attending fancy dinners and opening nights, or I could have a voice and contribute something to public life. I am not one of those people who needs to be in the Press. But presenting on The One Show for the BBC and doing my TV work opens up a door for me to speak out on certain things.

I’m also aware that while I can prepare my children for the outside world, I can also do something to prepare the world for my children and others like them.

Two of my girls have autism. There’s a lot more to autism than Rain Man. I don’t think people really understand what it is. My children have gone into classrooms where the teachers have no training in autism. But the parents are a resource which schools are not using. Why not get the parents in? Again, we should be working together.

 

 

What are you working on now?

Most of my work is probably between leadership coaching, TV presenting and vocal coaching. But I can wrap this into my campaigning and public speaking. I’ll talk about leadership and get the audience singing – anything which I think is helpful to get the message across.

 

Find out more about Carrie on her website here.