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Carers Rights Day. Diane’s Story

23 March 2021

Carers Rights Day. Diane's Story

Always Remember Parents are Carers

Today is Carers Rights Day, check out Diane's story and her experiences caring for her daughter Ella who has NF1. Some of you might even qualify as carers and not know about the rights you have as a carer. Nerve Tumours UK supports Carers UK, as well as Diane and all other carers supporting someone affected by nerve tumours. 

“My daughter Ella has a spontaneous form of NF - no family history, so sheer bad luck – and even though she displayed many of the characteristics of NF, health professionals including a geneticist failed to diagnose her. Ella was born with another genetic condition called Exomphalos Major (liver and bowel developed on the outside of her body), so her poor health and development was blamed incorrectly on this.

In desperation I went to my GP for support, who just said “What’s Neurofibromatosis?”. During our consultation she had to look it up on the internet. I was later told that student doctors are told to not worry about Neurofibromatosis too much, as they’ll probably never come across it. This is worrying as with this mind set, they’ll never think to look for it.

Now 7 years on, our lives revolve around constant hospital visits. We currently are cared for by 3 different NHS Trusts which involves costly travel and parking. Birmingham Children’s Hospital is amazing but sitting in oncology with Ella is distressing and upsetting for both of us. Her NF has progressed and has now left her with scoliosis, pronation in both feet, hypermobility, and fibromas appearing on her torso.

As a mother, my primary goal has always been to do all the worrying and allow Ella to just be a child and try and enjoy life as much as her condition allows. To enable this to happen, my life has changed beyond recognition. I had a career that I had worked hard to achieve and progress in, but this came to an end in 2010. It just became too hard to do hospital appointments, keep enough annual leave to look after both my children during school holidays and hold my job down. When my line manager asked, “what days can we expect to see you this week?” I knew I’d have to give my job up. Employers try to be flexible when it comes to working parents, but that flexibility becomes more rigid when faced with an employee with a child who has an incurable condition. I think you’re then looked on as a bit of a liability.

I adore my daughter and would do anything within my power to make life better for her.

However, I do feel I’ve changed as a person since her birth. I’m definitely not as confident as I once was when I was in work. Don’t get me wrong I’d give my life for my child, but leaving work has impacted on me, and some weeks the only people I physically talk with are my husband and daughter.

As many carers will understand every day is a battle whether it’s getting the right treatment, or support at school, it constantly wears you down. I don’t like having to be ‘that Mum’, who is constantly on the telephone complaining that certain interventions have not been adhered to. I picture in my mind the person on the other end of the telephone mouthing ‘it’s her again.’ I don’t want to be ‘her’ anymore.

Giving up work was the best thing care-wise, but the financial impact has been immense, after all most people require 2 incomes to keep a family going. I do claim Carers Allowance which is £66.15 a week, but that’s £9.45 a day! I don’t want paying for looking after my daughter, but I do need to pay national insurance contributions to enable me to get a pension. At the end of the day carers must save the Government billions, imagine if every carer said ‘I’m done!’ Well it wouldn’t happen and the Government know that all too well.”

Diane is right – the care provided by the nations’ unpaid carers is worth an estimated £132bn per year – considerably more than total spending on the NHS in England. New research has estimated that there are as many as 8.8 million carers across the UK, and many don’t realise they are entitled to support. Carers Rights Day is held every November to help them find out about their rights. Find out more by clicking on the button below.

" I do claim Carers Allowance which is £66.15 a week, but that’s £9.45 a day!... At the end of the day carers must save the Government billions"

– Diane