People with painful leg ulcers are being ‘abandoned’ 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 is fighting for improved diagnosis and treatment for 2.2 million patients a year, many of them elderly, who live with ulcers and lower leg wounds – described as a ‘hidden epidemic’.
At the launch, a statement was read out from former Labour MP Ann Clwyd, 86, who has suffered from poorly treated leg ulcers for several years. She hit out at the ‘desperate’ situation saying that despite huge NHS spending, older people like her were ‘being hung out to dry’.
Leg ulcers can heal with early care. However, scores of sufferers are being 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 – which cost the NHS an estimated £5.3 billion a year – can escalate and become impossible to treat, leading to reduced mobility, life-threatening infections and amputation.
‘DESPERATE’: Ann Clwyd, former MP for Cynon Valley, has said she has been ‘hung out to dry’ regarding her leg wounds
HAPPIER TIMES: Labour’s Ann Clwyd running for Denbigh in 1970
Some patients say they are not taken seriously by GPs or have been told by doctors to ‘learn to live with’ leg problems. Those worst affected become housebound and need to rely on care workers.
Aside from the physical problems, they can harm social lives and cause embarrassment, anxiety, loneliness and depression.
For some elderly people, an ulcer or leg wound can be as devastating as a fall, triggering a downward spiral in their overall health.
One story brought to light at the launch of the petition illustrates how ruinous a lack of appropriate care can be.
A family, who wished to remain anonymous, told of their 84-year-old mother who died last year of sepsis, the body’s extreme reaction to an infection, after her leg ulcers were left untreated.
The active grandmother had developed red, itchy legs and was diagnosed with skin infection cellulitis and prescribed antibiotics. She was later told she had eczema.
But the itching and scratching caused breaks in the skin – which led to ulcers on both legs.
Her son said in a statement: ‘She tried hard to remain active, as she had always done. However, the ulcers became so painful that she was eventually unable to walk.’
The pain was so bad that when community nurses came to change her dressings she was given painkillers – but no further treatment or advice.
By March last year, she was in excruciating pain. Her GP prescribed increasing doses of morphine but this triggered delirium, leading to hospital admission. It was only then, her family say, that she started to get the treatment she needed.
But it was too late – her ulcers caused a severe infection and she died of sepsis two months later. ‘As a family member or carer, it’s extremely distressing to witness someone who, before the onset of ulcers, was independent, sociable and active suddenly deteriorate into someone who is frail and not safe to live alone,’ her son said.
‘There is no doubt in my mind that if the ulcers had been treated effectively in the first place, she would still be alive today.’
It couldn’t be simpler to show your support for improving care for chronic leg problems
- The campaigners behind Leg Club have created a petition called Enough Is Enough which anyone can sign to back the cause.
- The organisers are calling for more specialist nurses, extra funds for research into treatments and greater public awareness.
- To sign, visit legclub.org/manifesto, which will take you to an online form.
- The form will ask for basic details, which includes your name, email and postcode. Then click ‘sign petition’.
- You can also call Leg Club on 01473 749565 and ask for your name to be added to the Enough Is Enough petition.
- The campaigners say that the more signatures they collect, they more likely politicians will take their concerns seriously.
The petition, which aims to drive much-needed change, has been created by Ellie Lindsay, a former district nurse who set up a successful national initiative to address lower limb care 28 years ago. 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 how patients were diagnosed, managed and cared for. ‘I’ve heard harrowing stories from people who just aren’t getting proper treatment which have made 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, yet 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 doesn’t know anything about treating their legs and isn’t much help.
‘It’s not just the elderly. One of my Leg Club members is in his 30s 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 because of injuries or conditions such as diabetes and problems affecting the veins, narrowing of the arteries or excess pressure in the veins called venous disease.
These underlying health problems restrict the flow of blood, oxygen and nutrients to the leg which can make it harder for wounds to heal. Around two thirds of cases become chronic.
‘People are going in and out of hospital with complications and yet dealing with this issue is not on anyone’s agenda,’ Ms Lindsay continued. ‘But I am determined to raise it – it’s a hidden epidemic. Every MP needs to know what might be happening in their constituencies and we need to raise awareness so people know the risks and how to get help.’
Guidance recommends patients with a new ulcer or wound see a nurse for a scan to check blood flow and be given compression bandages if needed.
Labour MP Ann Clwyd, 86, who has suffered from poorly treated leg ulcers for several years
These underlying health problems restrict the flow of blood, oxygen and nutrients to the leg which can make it harder for wounds to heal. Around two thirds of cases become chronic
They should be referred to a vascular specialist in hospital within two weeks for detailed tests to determine the cause of the problem and recommend appropriate paths – which might include minimally invasive treatment to open up or seal damaged veins. Medication may also be given to improve blood flow and a stent inserted.
IT’S A FACT
Around a third of all wounds in the UK remain unhealed – that’s about one million in total, according to a report in the British Medical Journal.
But this guidance 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 research shows.
Prof Davies said: ‘Even when patients are referred there are significant delays because they aren’t prioritised in secondary care. Yet without treatment in hospital you’re more likely to have the issue recur. GPs often pass these cases to practice nurses and they never see a doctor. This shouldn’t be a postcode lottery where some patients are abandoned.’
Former Cynon Valley, in Wales, MP Ann Clwyd went to her GP with a round, red mark on her leg and was told to apply Vaseline.
‘The GP wasn’t much interested,’ she said. ‘Luckily, I was referred to someone at St Thomas’s Hospital in London and immediately they said: “That’s a vascular problem”.’
Ann described her condition, and the journey to have it treated, as ‘painful and desperate’. In a statement she said: ‘I have now spent the last three nights alternating between bed and a chair because pain is preventing me from sleeping. I cannot believe that after several years of suffering I should still be in such discomfort.
‘Why are we being hung out to dry? It is draining, inevitably dominates daily life and costs the NHS time and money. This must change.’
Ms Lindsay’s Leg Clubs have helped transform care for the patients able to access them. The clubs, only available in some parts of the country, are run by volunteers in partnership with GP practices and the NHS in non-medical venues such as churches and football clubs.
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Specialist and community nurses join forces to offer treatment and advice. Patients do not need an appointment and simply turn up to the events, which can happen twice weekly.
‘It’s about treating the whole person,’ says Ms Lindsay, ‘and we know it works.’
An audit of 17,000 people who attended Leg Clubs over a five year period found 62 per cent of simple ulcers were healed after 12 weeks (increasing to 78 per cent over six months), and 41 per cent of more complex cases. Only one in five had his or her ulcer recur.
It was also found to be significantly cheaper than home visits.
St Ives MP Derek Thomas, former chair of the vascular and venous all-party parliamentary group (APPG) and also a member of the APPG on Ageing and Older People, would like to see Ms Lindsay’s Leg Clubs expanded further.
‘They are brilliant because it puts care back on the agenda for these people, but it’s not funded everywhere,’ Mr Thomas said. ‘It’s in no one’s interests not to care for people in a timely way.
‘We need to make it clear to everyone, from patients to doctors to ministers – this is the route to follow to prevent these avoidable conditions from ruining lives.’