Chronic UTI and EDS patients fear losing PIP if benefits change

08/05/2024

Patients with “misunderstood” chronic conditions fear they could lose personal independence payments (PIP) if plans to overhaul disability benefits go ahead.

People suffering from chronic urinary tract infections (UTI), endometriosis and Ehlers-Danlos syndrome (EDS) fear disability benefits become harder to get – and keep – under the proposed system, despite the debilitating and painful symptoms they produce.

Rishi Sunak announced a consultation on the PIP system which could see some disabled people having their benefits reduced or removed altogether if it is judged they do not face higher costs as a result of their condition.

The pledge came as part of a package of reforms to make Britain’s benefits system “sustainable and fit for the future” after a major increase in the number of people signed off work, often on the grounds of poor mental health.

The Prime Minister said that “more medical evidence about conditions should be provided, as some payments were made on the basis of subjective and unverifiable claims”.

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.

The proposals have sparked concern among chronic UTI and EDS patients who currently receive PIP as both conditions are widely misunderstood, meaning getting medical evidence can be difficult.

EDS – which is more commonly reported in women than in men – takes an average of 10 years to be diagnosed, according to EDS UK, while chronic UTI patients can wait up to 12 years for a diagnosis, research shows.

Endometriosis takes nearly nine years to diagnose, according to Endometriosis UK.

Chronic UTI sufferers face mental health crises after being ‘dismissed and gaslighted’

EDS UK 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.

Alex Akitici, 50, from Dunstable, Bedfordshire, applied for PIP last June despite suffering from EDS since 2015.

The condition causes her to collapse up to three times a day, meaning she uses an electric wheelchair and is unable to use stairs on her own.

She said there is a clear lack of understanding about EDS, which was “very apparent” in her PIP assessment as she was not initially given the maximum amount – but she later won on appeal.

“I would say there’s definitely a risk of it being withdrawn because there’s not enough understanding now with the process there is,” Ms Akitici told i.

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.”

Similarly to EDS, there is no official NHS pathway for chronic UTI patients and patients often report feeling “dismissed” by GPs, meaning getting medical evidence for PIP can be difficult.

The condition was only recently recognised by the NHS and the National Institute for Health and Care Excellence (Nice) and there is no official guidance for GPs to follow yet.

Ms Kiren Gill, a urogynaecologist who specialises in recurrent and chronic UTI, said there is a “lack of awareness and understanding” about the condition.

She told i: “I can completely understand why patients are worried about PIP because it’s hard enough when you have a disability to get an equal footing and to be understood.”

‘I’d give up PIP if I could get better tomorrow’

Julie Sowden, 52, from Lancaster, has struggled with a chronic bladder infection for the last few years which causes “daily chronic pain that’s there all the time, burning”.

“I wouldn’t wish this on the worst enemy – it is completely debilitating,” she told i.

She signed onto PIP in October last year due to the chronic UTI, as well as other conditions including fibromyalgia and chronic irritable bowel syndrome.

“I’m hoping my other conditions keep me on the PIP but if not unprepared to fight because I’ve had to change my work,” she said.

She now looks after her nephew at home after leaving her job in a school helping children with learning difficulties due to the “debilitating pain” and frequent need to use the toilet.

“My life has completely changed with this,” Ms Sowden said. “I’d give the PIP up. I’d give everything up to be better tomorrow.”

Dr Gill said it is often GPs who provide medical support certificates rather than specialists so it is vital for communication between primary care and secondary care to be “really robust” – but this can be “challenging”.

She said chronic UTI symptoms vary widely, but some patients are “very debilitated by this condition” due to pain, toilet frequency and generally feeling unwell.

“In that situation, they aren’t able to work and a disability allowance makes a massive difference to them,” she added.

Other patients with misunderstood conditions have struggled to get PIP in the first place, including Amy Hughes, a 27-year-old from Petworth, West Sussex.

She said getting PIP is “near-on impossible” as the condition can be misunderstood by GPs and benefits assessors.

Ms Hughes, who is a single mother with a six-year-old son, described the Government’s proposals as “scary” because “it’s hard enough as it is for people to get PIP”.

Emma Cox, CEO of Endometriosis UK, said there is still a “widespread lack of understanding of the varied and sometimes debilitating impacts” of the condition.

“All too often, we hear stories of GPs, employers, benefits assessors and others simply not believing, or not taking seriously, the symptoms experienced by those with endometriosis,” she told i.

She called on any benefits reform to recognise the impact of long-term, cyclical and intermittent conditions like endometriosis and take them seriously, rather than “being dismissed because their disease isn’t understood, or they didn’t appear unwell at the moment of being assessed”.

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 is chronic UTI?

Specialists say the infection, which often begins as an acute bout of cystitis, can occur when bacteria become embedded within the bladder wall and become difficult to treat with short courses of antibiotics.

The illness can affect women, men, children and the elderly, and can leave them bedbound, feeling suicidal, and unable to work, sleep, leave the house or socialise with their friends and family.

Symptoms can include daily bladder and pelvic pain, the constant urge to urinate, and pain or a burning sensation while peeing.

There are specialists within the UK who are treating the condition, including an NHS clinic run by the Whittington Hospital in north London.

Patients are often given a longer course of antibiotics that can sometimes last for more than a year until their infection is cleared and have fresh urine samples examined under a microscope for signs of the infection.

What is endometriosis?

Endometriosis affects 10 per cent of women from puberty to menopause, which is more than 1.5 million women in the UK, according to Endometriosis UK.

It occurs when tissue similar to the lining of the womb grows in other places, such as the ovaries and fallopian tubes, according to the NHS. Symptoms include pelvic pain which usually worsens during your period, pain during or after sex, and difficulty getting pregnant.

Professor Hawthorne said: “GPs will always strive to work with patients to understand their symptoms, so they can receive a timely diagnosis – and it’s never easy to hear cases of patients not feeling that this has been the case. However, with some conditions a diagnosis will take longer and require more investigation, including sometimes a referral to secondary care, and we understand our patients’ frustrations when this takes longer than it should.

“It is therefore highly concerning that more medical evidence may have to given by patients seeking PIP when 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.

“As GPs, our area of expertise is delivering clinical care, and our priority will always be our patients. Those receiving PIP are some of our most vulnerable so it’s vital that we do our best to safeguard their well-being and health. We need to ensure that our most vulnerable patients are helped, not in danger of losing financial support to which they’re entitled.”

A spokesperson from 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.

“This will enhance support for people with health conditions and disabilities while ensuring the system is fair to the taxpayer.”