Older people left to suffer pain of chronic leg wounds without treatment, like ex-MP Ann Clwyd

People with painful leg ulcers are being ‘left out’ in some parts of Britain because of a postcode lottery of care, according to a campaign launched in Parliament this week.

The Enough Is Enough petition fights for better diagnosis and treatment of 2.2 million patients a year, many of them elderly, living with ulcers and lower leg wounds – described as a ‘hidden epidemic’.

A statement was read at the launch from former Labor MP Ann Clwyd, 86, who has suffered from badly treated leg ulcers for several years. She commented on the “desperate” situation, saying that despite huge NHS spending, older people like her were “hung to dry”.

Leg ulcers can heal with early care. However, scores of patients are left in agony and without treatment because specialist services in the community are patchy and hospital referrals are not made or there are long waiting lists, experts say.

Painful, debilitating leg conditions – costing the NHS an estimated £5.3 billion a year – can escalate and become impossible to treat, leading to reduced mobility, life-threatening infections and amputations.

Some patients say they are not taken seriously by GPs or are told by doctors that they have to ‘learn to live with’ leg problems. Those most affected are housebound and dependent on aid workers.

Apart from the physical problems, they can harm social life and cause embarrassment, anxiety, loneliness and depression.

For some elderly people, an ulcer or leg injury can be as devastating as a fall, sending their overall health into a tailspin.

A story that came to light when the petition was launched illustrates how disastrous a lack of appropriate care can be.

One family, who wished to remain anonymous, told of their 84-year-old mother who died last year from sepsis, the body’s extreme response to infection, after her leg ulcers went untreated.

The active grandmother had developed red, itchy legs and was diagnosed with cellulitis from a skin infection and prescribed antibiotics. She was later told she had eczema.

But the itching and scratching caused breaks in the skin – leading to ulcers on both legs.

Her son said in a statement: “She did her best to stay active, as she always had. However, the sores became so painful that eventually she could no longer walk.’

The pain was so bad that when district nurses came to change her bandages, she was given painkillers but no further treatment or advice.

In March last year she was in excruciating pain. Her GP prescribed increasingly higher doses of morphine, but this led to delirium, which led to hospitalization. Only then, her family says, did she begin to receive the treatment she needed.

But it was too late – her sores caused a serious infection and she died of sepsis two months later. “As a family member or caregiver, it is extremely distressing to see someone who was independent, social and active before the onset of ulcers suddenly regress into someone who is frail and not safe to live alone,” said her son.

“I have no doubt that if the sores had been treated effectively in the first place, she would be alive today.”

The petition, which aims to bring about much-needed change, was created by Ellie Lindsay, a former community nurse who launched a successful national initiative 28 years ago to address lower extremity care. She also established local ‘Leg Clubs’, clinics staffed by specialist and community nurses to support and treat patients in the community.

But today she said the number of leg clubs had fallen since the pandemic and little else had changed to improve the way patients were diagnosed, treated and cared for. “I’ve heard harrowing stories of people just not getting the right treatment, which makes me feel very despondent,” Ms Lindsay told The Mail on Sunday.

“The reality of the postcode lottery is that there is exemplary care in some areas, where there are hospital and community clinics, as well as leg clubs, but very poor care in others.

“People write to our website about the lack of care. One person said their mother is now housebound, while others say their GP knows nothing about treating their legs and isn’t much help.

“It’s not just the elderly. One of my Leg Club members is in his thirties and suffered from depression because he had a small ulcer and was unable to work with the pain and lack of sleep.’

Leg wounds and ulcers develop as a result of injuries or conditions such as diabetes and problems with the veins, narrowing of the arteries or excessive pressure in the veins called venous disease.

These underlying health conditions limit the flow of blood, oxygen and nutrients to the leg, making wounds more difficult to heal. About two-thirds of cases become chronic.

“People go in and out of hospital with complications and yet no one is on the agenda,” Ms Lindsay continued. “But I’m determined to bring it up — it’s a hidden epidemic. Every MP needs to know what can happen in their constituency and we need to raise awareness so people know what the risks are and how to get help.’

The guidance recommends that patients with a new ulcer or wound see a nurse for a scan to check blood flow and get a compression bandage if necessary.

They should be referred to a hospital vascular specialist within two weeks for detailed testing to determine the cause of the problem and recommend appropriate pathways – which may include minimally invasive treatment to open or seal damaged veins. Medication may also be given to improve blood flow and a stent may be inserted.

But this guideline is not always followed, according to Alun Davies, professor of vascular surgery at Imperial College London. The average time from referral to being seen for venous ulcers was 100 days, his team’s study shows.

Prof Davies said: ‘Even when patients are referred there are significant delays because they are not prioritized in secondary care. But without hospital treatment, the problem is more likely to return. GPs often pass these cases on to practice nurses and they never see a doctor. This should not become a postcode lottery in which some patients are abandoned.’

Former Cynon Valley, Wales MP Ann Clwyd went to her GP with a round, red spot on her leg and was told to apply Vaseline.

“The GP wasn’t very interested,” she said. ‘Luckily I was referred to someone at St Thomas’s Hospital in London and they immediately said, ‘That’s a vascular problem.’

Ann described her condition, and the journey to get treatment, as “painful and desperate.” In a statement, she said: “I have spent the past three nights alternating between bed and chair because pain prevents me from sleeping. I can’t believe I still feel such discomfort after years of suffering.

‘Why are we being hung to dry? It is exhausting, inevitably dominates everyday life and costs the NHS time and money. This has to change.’

Ms. Lindsay’s leg clubs have helped transform care for the patients who have access to them. Available only in some parts of the country, the clubs are run by volunteers in partnership with GP surgeries and the NHS in non-medical venues such as churches and football clubs.

Specialized and district nurses join forces for treatment and advice. Patients do not need an appointment and simply come to the events, which can happen twice a week.

“It’s about treating the whole person,” says Ms. Lindsay, “and we know it works.”

An audit of 17,000 people who visited leg clubs over a five-year period found that 62 percent of simple sores healed after 12 weeks (rising to 78 percent in six months), and 41 percent of more complex cases. Only one in five had their ulcer come back.

It also turned out to be significantly cheaper than home visits.

St Ives MP Derek Thomas, former chairman of the Vascular and Venous All-Party Parliamentary Group (APPG) and also a member of the APPG for Aging and Older People, would like to see Ms Lindsay’s leg clubs expanded further.

“They’re brilliant because it puts caring for these people back on the agenda, but it’s not funded everywhere,” said Mr Thomas. “It is in nobody’s interest not to take care of people in a timely manner.

“We need to make it clear to everyone, from patients to doctors to ministers, that this is the way forward to prevent these preventable conditions from ruining lives.”