‘I got a little scar, an ulcer, but I thought nothing of it.” Lauren Brimble recalls the mark that appeared on her lower right leg 11 years ago. It seemed routine at the time, but it was the start of Brimble’s long struggle with wounds in different parts of her body. She says through gritted teeth that they are “uncomfortable, ugly and painful”: “They’re constantly there, and that bothers me.”
As she talks, a nurse is tending to her latest wound, on the inside of her left calf. Measuring 6.5cm long and 5.5cm wide, it resembles an orangey-red hole just below the knee: raw, angry and exposed. “It started off quite small – I’ve had it for two or three years now,” says Brimble, matter-of-factly.
Brimble, a 32-year-old learning coach, is among a fast-growing number of people living with “chronic wounds”: a major and very expensive problem that gets very little media or political attention. They usually take the form of an ulcer on the foot or leg that does not respond to treatment and so does not heal, debilitating those afflicted for months or even years. There are an estimated 2.2 million people living with non-healing wounds in the UK and caring for them costs the NHS upwards of £5bn a year – roughly what it spends on treating obesity.
“Having a chronic wound is often devastating for patients,” says Dr Una Adderley, NHS England’s expert on wounds. “People with chronic wounds experience pain, malodour and leakage, impaired mobility, anxiety, sleep disturbances and social isolation. This has a profound impact on their quality of life.”
Wounds are usually caused by an injury or surgery. However, having an underlying illness such as diabetes, problematic vein conditions such as varicose veins or excess pressure in the veins (venous disease), and narrowing of the arteries (arterial disease) increases someone’s risk of developing a wound in the first place and of it then not healing for a long time. Pressure ulcers, caused by sitting down too long, are another common cause. Adderley says that about 59% of wounds become chronic.
The increase in those with the condition is down to rising numbers of older people, and people with diabetes, who are at greater risk of developing a chronic wound; the number of people with one or more chronic wounds is going up accordingly. The relentless rise in obesity is also a factor, adds Adderley. Older age, diabetes and obesity can also interfere with wound healing, as can smoking, infection or poor diet.
Brimble’s chronic wounds are the result of health problems that increase her risk of ulceration, including protein C deficiency, which means her blood is more likely to clot, and the resulting chronic venous disease in both legs. This wound is the fifth she has had; each has lasted for many months and needed regular medical care. The effects are practical and psychological, not just physical. “My wounds are on my mind 90% of the time – they affect my life in pretty much every way,” she says. “They are low-grade painful and give me discomfort all the time.” Brimble has had to take a lot of time off work, including one eight-month spell in 2017, when she had to go to hospital three times a week. It is difficult enough as it is to get around: she cannot go swimming, or get her legs wet in the rain – when they are at their worst, she can’t even walk. “I can’t be spontaneous; I have to plan everything with my wounds in mind,” she says. “Wounds aren’t classed as a disability, but I’m more disabled than some people with a blue badge.”
Brimble’s wounds also induce panic attacks five or six times a week and she has recently resumed taking antidepressants. “I’ve developed a strong gallows humour about them, but they are incredibly stressful. It’s a battle every day, a full-on slog. The worst thing is that it’s summer, it’s boiling hot, and I’ve got my leg wrapped in bandaging. I can’t wear skirts or dresses; I can only wear trousers.” But, she adds, determinedly: “I’m refusing to let the wounds win.”
Brimble is lucky that she receives excellent care when she needs it at the wounds clinic at St Woolos community hospital in Newport in Wales. It is run by Prof Keith Harding, who, in 1991, gave up a career in hospital medicine to become the UK’s first specialist in wounds. “They are undoubtedly a significant clinical challenge, though aren’t always seen as one,” he says. “The public thinks of wounds as trivial, minor traumas, like cutting your finger on a piece of paper, sunburn or grazes on knees. In reality, there’s a big diversity of underlying diseases that can cause them. The main obvious effects are pain, suffering and disfigurement, but they have huge effects on individuals.”
Another regular visitor to Harding is 65-year-old Ray Freeman, a former panel-beater. He first got wounds on his ankles and lower back from lying in a hospital bed for eight months in 1973 when a car crash left him unable to use his lower limbs; he has used a wheelchair ever since. When those wounds cleared, he was mercifully free of them until 2008, when he slipped in the shower, hitting the ground hard in the process.
He began getting sores again, on his bottom and the sides of his feet. Freeman has ischaemia, a form of arterial disease that restricts blood supply. “That means I can’t wear any footwear, not even slippers,” says Freeman. “But the biggest of the 10 to 15 sores I’ve had have been on my buttocks, from going to the gym and doing weights exercises – that made things much worse. The ones on my bottom were huge. They were just big holes in both cheeks – so big you could put a hand into them.” They were so deep that pieces of bone started peeking out from the holes, because the bone had become diseased – a side-effect of serious wounds called osteomyelitis. Freeman’s treatment involved antibiotics and surgery in which skin and muscle from his leg were grafted to repair the wound.
Most at risk are people with diabetes. A third of all wounds are caused by foot ulcers brought on by the illness. “Injuries to the feet can quickly become dangerous for people with diabetes if they’ve had difficulty managing their condition for a long time,” says Dan Howarth, a diabetes specialist nurse who is also head of care at the charity Diabetes UK. He explains that that is because increased blood sugars create thick, sticky blood, which can lead to neuropathy (a loss of sensation due to nerve damage) and/or problems with circulation due to damage to the small blood vessels.
“Problems with circulation reduce the body’s ability to heal injuries, which is a real problem when someone with diabetes also has a loss of sensation. A minor injury to the foot can go unnoticed, and therefore untreated, which can quickly lead to an ulcer, infection or – without urgent specialist care – even amputation.”
Some 70,000 to 90,000 diabetics in England have a foot ulcer at any one time; it is sobering that, in England, diabetes leads to more than 9,000 leg, toe or foot amputations a year, and a diabetic is 20 times more likely to experience an amputation than someone without diabetes. “Wounds have consequences,” says Harding. Diabetics with a wound or ulcer on their foot have almost a 50% chance of being dead within five years – far higher than for breast (18%) or prostate (8%) cancers.
Yet despite the serious impact of wounds and their frequency, the NHS is not especially effective at treating them. “Although wounds are very common and very expensive for the NHS, they are poorly managed in the vast majority of cases,” says Harding. “Many patients are frustrated at their inability to access clinical staff who have expertise in this area, which often means that their wounds go on troubling them, sometimes avoidably, for years and years and years.”
Adderley, who has drawn up NHS England’s national wound care strategy, admits that “suboptimal wound care leading to non-healing or delayed healing increases the number of people living with chronic wounds. Too many people are receiving care for which there is little evidence that it works and too few are receiving care for which there is strong evidence that it works.”
The death of John Pearce shows the tragic potential consequences. The 90-year-old, who lived alone and was confined to his bed, developed a wound to his left knee after a fall at his home in Gospel Oak, north London, last year. But poor care, especially from the district nurses who visited him, meant it grew to 7cm deep, so deep that it left his tendon and bone exposed. It got infected and he died as a direct result of a wound that, with proper attention, would have been treatable.
The coroner who presided over the inquest into his death was so appalled at the evidence presented of Pearce’s poor care and an inexplicable failure to take him to hospital sooner that he took the unusual step of issuing a Prevention of Future Deaths report to Central and North West London (CNWL) NHS trust, nurses from which had visited him. “It is clear staff were following a tissue viability nurse care pan, but no one appeared to recognise the severity of the injury and the fact that tendons and bone were exposed,” wrote Edwin Buckett, the assistant coroner for north London. There were also “insufficient attendances” by the district nurses. If Pearce had been admitted to hospital sooner, as he should have been, then he would have lived, he added. Last month, CNWL heads apologised, saying that Pearce’s death was deeply regretted and measures had been put in place to prevent it from happening again.
Last week, the veteran Labour MP Ann Clwyd left her bed in St Thomas’ hospital opposite parliament, where she was being treated for a foot ulcer, to lead an adjournment debate in the House of Commons on “provision of lower limb care”. Like Harding and Adderley, she is concerned that NHS care of people with wounds is too often not good enough, with patients subject to a postcode lottery in the availability of specialist teams to support them.
Doctors who specialise in wounds want everyone involved – government, the health service – to do much more. “Wounds generally are neglected by everybody: the medical community, NHS, governments, hospital managers and even society, which mistakenly seems to think they’re part of the ageing process,” says Harding. And it cannot be down to those who are living with wounds to lead the charge. “Patients are embarrassed by their wounds and weakened by the pain and sleep deprivation that come from living with a wound,” says Adderley.
“They don’t like to make a fuss, but this situation cannot go on. Patients deserve better.”
