’ll fight again to get my disabled daughter a hysterectomy

Alison Thorpe’s bid to have her disabled teenager’s womb removed six years ago failed, but followed a landmark ruling in the high court this month, she’s re-launching her case…

Six years ago, Alison Thorpe made headlines when she fought to have her severely disabled daughter Katie’s womb removed to spare her pain when her started her periods.
Katie has Cerebral Palsy, she can’t walk or talk and has the mental age of an eight month old and Alison was convinced that starting her periods would make her already agonizing life even worse.
After three years of battling through NHS board meetings, medical experts claimed the operation wasn’t in 15-year-old Katie’s best interests.
But speaking after a High Court judge made legal history this month by ruling a 37 year old man, whose identity was protected, with learning disabilities could have a vasectomy – a case brought by his parents as he was deemed incapable of consenting to the procedure – Alison, 51, tells Closer that the decision has spurred her on to re-start her legal battle.

“Every month when she has her period she screams and writhes in agony, it’s heartbreaking.
“Katie can make choices in life, so why – as her mother who has cared for her for over 20 years – should that choice not be placed with me? Every part of me wants to make her life that bit easier, she gets little enough joy out of her life and I try everything to make it better. This was something I was sure would stop her life becoming worse. But we were refused.
“I think it’s phenomenal they’ve made this ruling in the high court. They told me it was Katie’s right to choose whether to have a hysterectomy. But hopefully this case has changed things. It was his parents that wanted him to have a vasectomy, as he wanted to have sex but didn’t want to conceive. They ruled it was in his ‘best interests’. Neither Katie nor the disabled man are capable of making a decision – they need someone who understands their needs to make it for them. I’m determined to do this for Katie.”
Katie’s Cerebral Palsy was caused by oxygen starvation at birth. She was diagnosed when she was four months old.
“I felt something was wrong from the beginning,” says Alison. “She used to cry for 22 hours a day for the first weeks of her life. Her diagnosis was heartbreaking – to hear that the child I adored would never develop mentally beyond about eight months old was horrendous.

“She loves being near horses and she also enjoys watching sensory lights. But, as close as I am to her, I still can’t always work out what’s wrong, she can’t tell me when she’s too hot or cold, when she’s got an itch or if she’s hungry or thirsty. She gets terrible headaches, and will lie screaming for hours on end, which is why we moved house to Billericay, in Essex, to a field in the middle of nowhere as our neighbours used to complain.”
In 2005, when Katie was on the cusp of puberty, Alison – who lives with her partner, Peter, 57, and her younger daughter, Melissa, 17 – asked her GP about the possibility of a hysterectomy and was referred to a gynaecologist.
She explains: “I was terrified about Katie having to go through monthly periods, I knew it would bring her extra pain and I wanted to see what we could to do prevent this happening and a hysterectomy seemed like the only fool-proof answer. Katie’s life was already unimaginably difficult, the thought of monthly periods adding to her distress filled me with dread.
“The gynaecologist suggested the contraceptive pill or contraceptive injections for Katie but because she is completely immobile there is a higher risk of Deep Vein Thrombosis so they weren’t viable options.”
A hysterectomy – which involves going under general anaesthetic and runs minor risks, such as damage to the bladder or bowel – was, Alison insists, the only solution.
“A hysterectomy prevent her periods starting – I’d only put Katie through something that would definitely stop them. Any side effects such as her hormone levels falling could be controlled with medication – so I wasn’t worried about this.”
For the next three years Alison battled for the hysterectomy, through various NHS boards, but in January 2008 a panel of doctors decided against it.
She says: “Losing the case was heartbreaking. It was like I’d been banging my head against a brick wall, I couldn’t fathom why they couldn’t see how much Katie needed this.
“When they said it was against her human rights, I could have cried. I felt let down but I was determined not to give up.”
Alison considered taking her daughter abroad for the operation, but she knew if complications occurred it could be problematic. Instead she decided to carry on with her case with the NHS but in December 2009 she was diagnosed with breast cancer and it had to go on hold.
She says: “I had to fight for my life, I focused on getting better for Katie.”
Alison underwent a double mastectomy in March 2010, followed by chemotherapy, which she was still recovering from when Katie started her periods in 2011, aged 19.
“It was terrible,” recalls Alison. “Katie screamed and screamed – I felt so helpless. We give her paracetemol to help with the pain, but it doesn’t seem to help. Watching her in more pain that she was already in because of her condition was horrendous and it made me so angry because it could have been avoided.”
The high court decision this month is the first of it’s kind in this country – and Alison hopes that it will shine a light on the issue.
She says: “I don’t want this to be a blanket policy – meaning everyone can go forward for it – but the legal system needs to put something in place for people like me, who have to watch their child suffering unnecessarily.
“This ruling has given me hope that one day – Katie will be able to have the operation that will stop at least some of it. Her condition is incurable, which is heart breaking, but if I could take away this pain once a month, I could finally feel like I was doing something to make her physically better.”