Patients with Iron Lady ‘claw hand syndrome’ are missing out on effective treatment because GPs are unaware of the options available

Patients with a debilitating hand condition are missing a simple treatment that could spare them a painful operation, experts warn.

Radiation therapy, usually used to tackle cancer, can relieve Dupuytren’s contracture – problems with hand tendons that lead to permanently bent fingers. But few hospitals offer it for the condition and many GPs don’t know it is an option, campaigners say.

Two million Britons have some degree of Dupuytren’s, also known as ‘claw hand’. Famous patients include Margaret Thatcher and actor Bill Nighy. The cause is unknown, but it runs in families and worsens with age. This affects approximately 20 percent of people over 65.

According to the charity The British Dupuytren’s Society, the standard approach is to wait until the condition is severe, causing the fingers to bend completely inwards, before offering straightening surgery. The surgery involves cutting or completely removing parts of the affected tendons.

According to the charity The British Dupuytren’s Society, the standard approach is to wait until the condition is severe, causing the fingers to bend completely inwards, before offering straightening surgery.

A third of patients require more than one operation, and some patients may even need to have their fingers amputated.

But radiotherapy, offered earlier, can prevent patients from having to go under the knife. It is given in ten sessions of one minute each and at a much lower dose than cancer care. It works by breaking down the hard ligaments and lumps that form in the hand tendons – the cause of the contracture.

Anna Schurer, chair of the British Dupuytren’s Society, said: ‘Radiotherapy is the only treatment that offers hope of preventing Dupuytren’s disease from worsening.

‘Before the pandemic we knew of many hospitals offering the treatment, but this list has now shrunk to four in England and one in Scotland on the NHS.’

Dr. John Glees, a private clinical oncologist, offers radiotherapy for Dupuytren’s disease and says it can improve the condition of patients with early disease.

In an audit of more than 150 patients treated between 2010 and 2015, Dr. Glees, who sees patients at Nuffield Health Cancer Center London in Wimbledon, said there was complete resolution or major improvement in 60 percent of cases, and minor improvement in 22 cases. percent and only 13 percent did not improve.

“It’s so frustrating that more people don’t have access to this treatment on the NHS,” he says. ‘It’s a common condition, but patients go to their GP and are told to come back if it’s much worse, and the results of surgery are often poor.’

Dr. Richard Shaffer, a clinical oncologist at Cromwell Hospital in London, uses radiotherapy to treat about 400 patients with Dupuytren’s disease every year. The private treatment costs around £3,000. He says: ‘The evidence suggests it is a very effective preventive treatment that reduces the risk of contracture (when the fingers become completely bent inwards) and needing surgery. But the NHS provision is patchy, with capacity issues in radiotherapy equipment and staff to provide this care, while it is also needed for cancer patients. But it is a concern that it is no longer available.”

Dr. Stephen Falk, clinical oncologist at University Hospitals Bristol NHS Foundation Trust, added: ‘I think radiotherapy centers are concerned that if they open the floodgates to benign diseases (such as Dupuytren’s disease) they will be overwhelmed.’

He says a major stumbling block was a 2016 decision by the NHS watchdog, the National Institute for Health and Care Excellence, not to support radiotherapy for Dupuytren’s disease.

It recommended that the treatment could only be offered under ‘special charge’, which means there are uncertainties about how effective or safe a treatment is, and requires doctors offering this treatment to collect data on outcomes.

Part of the concern was a theoretical risk of radiation-induced cancer, meaning NHS bosses stopped funding treatment in some areas.

However, in guidelines updated last March, the Royal College of Radiologists reviewed the latest research and recommended it as a treatment for Dupuytren’s disease.

A lack of knowledge among doctors that there are early treatment options is also a problem. ‘Patients cannot be referred, even in areas where it is offered by the NHS, because GPs don’t know about it,’ says Ms Schurer.

One lucky patient is 77-year-old Barry Williams, a retired lawyer, who says radiotherapy has completely resolved his early Dupuytren’s disease, allowing him to continue playing the piano.

Barry says he had been alert to signs of the condition after seeing his father and grandmother suffer with the problem.

“My father had many terrible operations, including the amputation of his left little finger,” he says.

Barry was having private treatment with Dr Glees over a decade ago when he noticed the first signs of the disease. At that point, his only symptom was wrinkling of his palms, which occurs when the buildup of tissue begins to form under the skin, pulling it down.

“The treatment was painless, I had no side effects and I have had no problems in the 14 years since,” says Barry. ‘Without this I would have been completely disabled, my hands would be useless and I wouldn’t be able to play the piano.’