Cannock Chase MP raises local man’s battle for treatment with the Prime Minister
Josh Newbury, the Labour MP for Cannock Chase, has taken a local man’s health battle to the highest levels in Westminster, urging the Prime Minister to take action to support people living with Ehlers-Danlos syndrome (EDS), a group of common but often misdiagnosed disorders of connective tissue.
Speaking during Prime Minister’s Questions, Josh shared the story of his Hazelslade constituent Connor Edwards, who lives with EDS and craniocervical instability (CCI). Once an active mountain biker and fisher, Connor is now largely bed bound and has had to resort to crowdfunding for specialist treatment abroad due to a lack of treatment options on the NHS.
EDS is a group of thirteen inherited conditions that affect the body’s connective tissues – the structures that support skin, joints, blood vessels, and organs. Symptoms vary widely but often include hypermobile joints, fragile or stretchy skin, chronic pain, and fatigue. Diagnosis is complex, and people with EDS often have to endure multiple misdiagnoses. Treatment options within the NHS are limited, especially where people have rarer complications like CCI.
Speaking in the House of Commons chamber, Josh said: “My constituent Connor Edwards lives with Ehlers-Danlos syndrome and craniocervical instability, which, in his words, means his head is slowly falling off his body.
“He is having to crowdfund for treatment in Spain because the NHS cannot give him the help he needs. Will the Prime Minister ensure that I, Connor and EDS charities have a meeting with the Minister to discuss what more we can do to give thousands of people like Connor their freedom back?”
In response the Prime Minister, Sir Keir Starmer, acknowledged the severity of Connor’s case and committed to facilitating the meeting, saying: “I have read through the details of Connor’s case, which has just been summarised. It is heartbreaking. I thank him for consistently campaigning and championing all those affected. I will make sure that he gets the meetings he needs so that we can hear from Connor and others and learn from their experience.”
Josh has been an advocate for EDS suffers since meeting with Connor, having previously raised Connor’s case in the Sir David Amess adjournment debate in July, and working with EDS UK, the leading charity supporting people with EDS and hypermobility spectrum disorders (HSD), as part of their #EnoughIsEnough campaign.
Adding to his statement in the Commons, Josh said: “People with Connor’s condition often find it nigh on impossible to get a diagnosis, with the understanding and treatment options not up to the standards seen abroad.
“77 years ago, a Labour government set up our NHS to make sure people could get treatment free at the point of need, but sadly we are still letting down thousands of people with EDS. I am looking forward to meeting the Health Minister very soon to discuss Connor’s case and what we can do for everyone else across the country in the same position.
