I have Crohn's - sick note reform will make it harder for disabled people to work

A young NHS worker with Crohn’s disease has said she is “terrified” by the planned overhaul of the sick note system, which she fears will make it hard for disabled people to work. Last week, it was announced the role of GPs in signing people off sick would be reduced or removed in several parts of England under the pilot scheme designed to tackle the growing number of people out of work due to poor health. Lauren Fox, 29, a trainee clinical psychologist in NHS mental health services in the North East, said the changes risk adding to the “mind-boggling number of hoops” people with chronic illnesses already have to jump through. Lauren has worked in the NHS for 12 years, but has been hospitalised with Crohn’s flare-ups around 15 times in the past three years.

She suffered severe symptoms and pain for years before she was diagnosed. Her complaints were dismissed, she said, until her appendix burst and doctors diagnosed her with Crohn’s. After being diagnosed in 2018, Lauren said she has only been signed off work twice when she was not in hospital. She even suffered a major bout of illness following her wedding. “A week later, on my honeymoon, I collapsed with a bowel obstruction and was hospitalised for weeks.

A chaplain was called and I had emergency life-saving surgery.” ‘The daily struggle of retaining employment’ Now in the final year of her doctorate, Lauren said she is “incredibly blessed” because the NHS has been “incredibly understanding,” and is protected by a “big umbrella system”. “But many people don’t have that luxury,” she told The i Paper. Lauren, fears the new sick note system will add to “the daily struggle of retaining employment in a world that doesn’t want to bend”. In some areas, GPs will issue an initial fit note before referring patients to a mainly non-clinical support service. In others, they will refer patients straight to the service, with no sick note issued.

Crohn’s disease Crohn’s disease is a form of inflammatory bowel disease that can cause severe inflammation in the digestive tract. Symptoms can include agonising abdominal pain, chronic fatigue, diarrhoea, bleeding, weight loss and complications requiring surgery. The condition can fluctuate dramatically, meaning people who suffer from it may need to take time off work at short notice. The teams are expected to include work and health coaches, with support ranging from counselling and exercise plans to physiotherapy built out of WorkWell services.

The pilot schemes will run in four areas from July, covering 100,000 appointments, and are backed by £3m in funding. A fit note – sometimes called a sick note – is a document a worker needs if they are unable to work for more than seven days due to illness or injury. It can be used to access statutory sick pay and certain benefits. GPs issue the vast majority of the 11 million fit notes approved in England each year.

More than nine in 10 declare the person “not fit for work”. Overhaul could ‘backfire’ She said the reforms could force disabled people to repeatedly disclose private medical information to people who are not clinicians. “Honestly, I already have to jump through so many hoops for my disability – hospital hoops, insurance hoops, sick notes, treatment, occupational health, blue badge, check-ups, blood work, workplace assessments, to name a few,” she said. “If you told me that to get signed off I had to share really private, confidential medical information with someone not medically trained, I don’t think I would go – and that would affect my employment. “I don’t think I would be able to face it, as flare-ups already drain my mental strength. And I’ve slaved for years in a competitive field to get where I am. “Adding any more barriers is only going to make it less likely disabled people can work.” Lauren, who is originally from Peterlee, County Durham, believes the overhaul of the system could “massively backfire”. “I think it’s penalising the disabled person when it’s the system that needs an overhaul,” she said. “It perpetuates the backtracking we’ve seen in the last couple of years on those desperately hard-won rights for people with disabilities.” Last September, after a three-week hospital admission following a Crohn’s flare-up, she applied to her GP for a fit note so she could recover at home. She explained the flare-up had involved “excruciating stomach cramps, bleeding from my backside, going to the toilet 10 times a day, iron deficiency, to name a few”.

The GP issued the fit note, but gave the reason as “tummy troubles”. “Tummy troubles – can you imagine?” Lauren said. “I actually laughed when I saw it. “The sheer lack of understanding when you’re in complete agony, and this goes on my employment record – and that was issued by a clinician.” At her request, the doctor rewrote the fit note, but Lauren said many people without her education or confidence might not challenge it. ‘Intrusive government overstep’ She said employment support could be helpful if the system genuinely advocated for patients and helped liaise with employers, but fears it becoming effectively mandated. “It feels like an intrusive government overstep, like state control,” she said. She also worries the pilots could mirror the PIP system, “where you’re constantly having to prove how disabled you are”. “Honestly, I’m really scared,” she said. “It’s so hard living like this. I’m terrified about the future, about work, family, all of it – but also the mental toll. This announcement hasn’t helped.” She added: “Personally, the only times I’ve been off when not physically in hospital have been when I’ve just come out of hospital.

I can’t roll my IV into work – why do I have to prove how sick I am?” A Department for Work and Pensions spokesperson said: “We’re piloting reforms to the broken fit note system that writes too many people off, replacing the current tick-box exercise with tailored work and health support. “Our pilots will be shaped by patients, employers, and healthcare professionals, testing what works before bringing forward legislation to further reform the inherited system. “Those who need time off will get it, and those who need more support will get that too.”