Charities lobby parliament over limb loss care postcode lottery

Charities are lobbying parliament to end what they call a postcode lottery of care for people with limb loss. They are calling for equitable access to prosthetics and rehabilitation services across the UK.

Around 13,000 amputations are carried out every year, and tens of thousands of people live with missing limbs. Some are born without them, others lose them through injury or illness. But follow-up support is inconsistent, with patients often left to find their own way.

One of those affected is Charlotte, who lost her legs and arms to meningitis when she was three. She remembers the constant process of being measured for new prosthetics as her body grew. Her family had to fundraise to pay for them privately. Each leg cost around 11,000 pounds, and the total cost of her prosthetics has been about 25,000 pounds. She said: "My bones would still grow as if I had my legs so the bones would grow through the skin ... I was having operations probably every two months two three months which meant I had to get new legs all the time."

Campaigners say the problem is a postcode lottery of what local NHS trusts provide. There are no standardised guidelines for the services that should be offered. They also point to a lack of reliable data on how many amputees there are, how many children are born without a limb, or with a limb difference. One campaigner said: "There's pretty good policies but they're not necessarily checked and analysed to see if they're all working and we know they're clearly not."

Dr Marie Tidball, the first MP to be elected with a congenital limb difference, says the needs are not just physical. She is calling for a mental health strategy. She spoke about her own experience of becoming anorexic as a teenager: "There wasn't anyone to give that kind of support to talk me through those things to normalise that experience." She argues that the issue is a lack of joined-up thinking, not just a lack of money. She said: "You need a disabled person at the decision-making table at every single level of government and for too long we haven't seen strong enough representation at the highest level."

The Department of Health and Social Care said it recognises the challenges for those living with limb loss and that its 10-year health plan will ensure the best possible care for individuals.

Charlotte, now 18, says she never thought she would be able to walk so well. She goes out with friends, wears stiletto heels, and says she has not fallen over. "I go out and I actually even when I've had a drink I don't even I haven't even fallen over my friends fall over and I don't and I'm like guys I've got no legs."