‘My illness means using stairs is life-threatening – but I had to fight for PIP’

09/05/2024

A patient with a rare genetic condition that left her unable to climb stairs due to her joints giving way has said she was still rejected for Personal Independence Payment (PIP) benefits after a “dehumanising” application process.

Alex Akitici, 50, lives with Ehlers-Danlos syndrome (EDS), a rare inherited disease that causes frequent joint collapses and excruciating pain.

She has suffered from the condition since 2015, but applied for PIP last summer after spending nearly £100,000 adapting her home so she does not have to climb stairs.

“Going up and down stairs is life-threatening,” Ms Akitici told i. “I’ve collapsed on them twice so we had a downstairs bedroom and bathroom built.”

She has also spent nearly £2,000 on an electric wheelchair to stop her joints from getting damaged during falls.

“I’ve got a bone sticking out my shoulder at the moment,” she added.

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It comes as the Government published a green paper on replacing the PIP benefits system, which is currently given to 3.5 million people as compensation for the costs of ill health regardless of their ability to work.

Proposals include changes to the eligibility criteria for PIP and alternative forms of support, including vouchers and grants for treatment, appliances and equipment.

Ms Akitici, of Dunstable, Bedfordshire, said: “My concern with the overhaul is that it’s going to turn to a voucher system but I’ve already paid the money to have my house adapted.

“I don’t know how a voucher would be able to assist me in paying off the massive remortgage I’ve got to pay for the extension I’ve had to have build for my own safety.”

Ms Akitici said there is a “massive lack of understanding” about EDS in the medical profession which can translate into the PIP assessment.

EDS – more commonly reported in women than in men – takes an average of 10 years to be diagnosed, according to EDS UK.

The support charity has called on the Government to put a clear care pathway in place across the whole of the UK for all people living with EDS, as well as hypermobility spectrum disorders (HSD).

These pathways, and a better understanding of EDS and HSD between healthcare professionals, would ensure that “medical evidence” is provided for rightful PIP claims, the charity said.

Ms Akitici collapses up to three times a day but was initially denied the “daily living” element of PIP as her assessor marked that she could do jobs around the house on her own.

“The maximum I’ve collapsed is three times in a day,” she said. “I can collapse every day. Or there were times when I can go a couple of days without collapsing. There’s no pattern – it just can happen anytime without warning.”

She can no longer drive or work in the office because of the condition, which leaves her in “excruciating pain” every day.

Ms Akitici added that her benefits assessor gave her a “low score” because she avoids strong pain medication – but this is because some painkillers can be harmful to EDS patients over long periods, according to the Ehlers-Danlos Society.

She was eventually awarded PIP after winning an appeal at a tribunal but said the initial assessment felt like a “tick-box exercise”.

What is EDS?

Ehlers-Danlos syndromes (EDS) are a group of rare inherited conditions that affect connective tissue, according to the NHS.

Connective tissues provide support in skin, tendons, ligaments, blood vessels, internal organs and bones. A gene mutation causes a certain kind of connective tissue – which is usually a form of collagen – to be fragile and stretchy.

This can sometimes be seen in patients’ skin and they are often hypermobile, meaning they can extend their joints further than usual.

Symptoms can also include long-term pain, chronic fatigue, dizziness, palpitations and digestive disorders – but the severity varies considerably.

In some patients, this can result in frequent fainting.

“What worries me is that [the process] is horrendous now so I can only envisage it getting worse,” she told i. “It’s dehumanising and stressful.”

“There’s definitely a risk of PIP being withdrawn because there’s not enough understanding with the process now,” Ms Akitici added.

Susan Booth, chief executive of EDS UK, said: “For the Prime Minister to state that ‘more medical evidence about conditions should be provided, as some payments were made on the basis of subjective and unverifiable claims’ is deeply worrying for people suspected of having EDS or HSD whose GP refuses to diagnose them and whose referrals to rheumatology are rejected.

“We are deeply concerned about the direction of travel as we know how hard it is to get medical evidence when the government still hasn’t put appropriate NHS services in place for everyone with EDS and HSD across the UK.”

Chair of the Royal College of GPs, Professor Kamila Hawthorne, said it was “highly concerning” to expect patients to provide more medical evidence for PIP as it “may not be clinically possible to provide this – especially for conditions where definitive diagnosis does take time or require tests and procedures in secondary care”.

“We need to ensure that our most vulnerable patients are helped, not in danger of losing financial support to which they’re entitled,” Professor Hawthorne added.

A spokesperson for the Department for Work and Pensions said: “We are modernising our disability benefit system to overhaul the ‘one size fits all’ approach and better target it towards those who need it most – enhancing support for people with health conditions and disabilities while ensuring the system is fair to the taxpayer.

“We’re encouraging everyone to have their say and respond to our consultation which includes questions on how our assessment process can be changed.”