‘Since lockdown it’s been with me more’: Lib Dem Emily Davey on living with MS

Councillor and wife of party leader warns of poor post-pandemic support for people with mobility issues

Emily Davey, the wife of Sir Ed Davey, has revealed that she has multiple sclerosis, while warning of a health emergency with thousands of people suffering from mobility issues still failing to get the support they need after the pandemic.

Davey, a housing expert and Liberal Democrat councillor who has been married to the party leader for 17 years, said revealing her longstanding medical condition was “not a decision lightly made” but that she had deteriorated during lockdown and was aware others were struggling.

In an interview in the cosy kitchen of the family’s sprawling Victorian home in Surbiton, south-west London, sitting alongside her husband, she told the Guardian: “I’m not the only one. People want to get back to where they were, but they need the tools.”

Davey, who ran Kingston council’s public health portfolio during the pandemic, said: “We’ve got a problem here; we have people with mobility problems, including the elderly, who aren’t suddenly going to recover and get better. How do you manage to get people active again on that scale?”

Her husband added: “Here is just another example of the impact Covid had on the nation’s health, which is probably not well recognised. We know both from our own personal experience, but also from our constituents and from talking to doctors, there’s a massive issue out there across the country.”

She is frustrated that public health gets pushed down the priority list while the NHS is in crisis, which simply exacerbates the problems in urgent care. A shortage of physiotherapists is a particular problem for those with mobility issues, along with the closure of NHS exercise classes.

“You’ve got to get ahead of things,” she said. “If you just spend your time firefighting, you’re just going to have more people you need, for example, to operate on. Lockdown was completely the right thing to do but we’ve also got to recognise that there was a price in people’s mobility to be paid.”

Davey, 52, was also conscious that her MS was becoming more noticeable with her pronounced limp, and said it had been weighing on her mind. “Since lockdown it’s with me more,” she said. “The reduction in my ability to walk and do as I would like. I’m quite an active person and there’s a degree of frustration there.”

Sir Ed Davey and his wife, Emily
Sir Ed Davey said he believed understanding of MS was ‘not great’. Photograph: Sean Smith/The Guardian

She first noticed some tingling in her legs in 2004, a year before she and Ed married, and went to the doctor. She was told that it could be MS but there was a shortage of scanners. In 2012, she had another attack. By this point she and Ed had had their son, John, who has a serious neurological disorder. Her father was also gravely ill.

“I went to see the GP because my hand wouldn’t hold things, my foot was dragging and I was seeing double,” she said. “I probably caught him on the wrong day: he said he thought I had a vitamin deficiency, and off I went.”

Days later, the family travelled to the Peto Institute in Hungary, which specialises in neurological disorders in children. She was wearing a bandage over one eye because it helped with her distorted vision.

“They looked at me and said: ‘We’re not treating John until we’ve treated you, you’re going off to see our neurologist,’” she said. Davey was sent for an MRI scan the next day, a Wednesday, before flying home to see her father, who died on the Thursday. On the Friday, she flew back to her husband and baby in Hungary.

“I was diagnosed on the Monday. But my diagnosis was not the top of my agenda at that time. It was my father, and John getting the treatment he needed. And Edward had just been appointed to the cabinet [as energy and climate change secretary in the coalition government].”

The Lib Dem leader, 57, believes that understanding of MS is “not great”, with most people thinking of it a severe disability when in fact 85% of cases, including his wife’s, are the less serious “relapsing remitting” form of the condition. “It can be serious, but not in Emily’s case. She’s bloomin’ active,” he said.

Emily has not had an attack in 10 years. She has brain scans every year and self-injects three times a week to keep the condition at bay. Physiotherapy and exercise – she swims several times a week – are key to managing her symptoms.

“It’s remitting. You have an attack then it goes away. It may come back, it may not. You may deteriorate, but you can get better again,” she said. “They monitor you and if there’s any further attacks or changes in the brain they change my medication. At the moment my medication is doing what it is supposed to be. As long as the disease stays as it is I’m fine, I just keep going.”

But her husband, the MP for Kingston and Surbiton, notes that while John has “more or less” got back to where he was pre-pandemic, Emily has not. “It was quite marked. Although you haven’t had an attack but some of the symptoms, it has had an impact on you,” Ed told her.

Emily and Ed Davey in their garden
Emily Davey is a Lib Dem councillor and runs the housing brief for Kingston council, south-west London, while her husband, Ed, is the party leader and MP for Kingston and Surbiton. Photograph: Sean Smith/The Guardian

Davey’s condition means that she can no longer keep up with her family, including their eight-year-old daughter, Ellie, on walks – but she uses the electric bike her husband bought for her 50th birthday. She can support her son’s morning exercises only when they are on the floor, rather than standing.

She said it was “a worry” to have MS when they had a child with such serious needs, but said it also helped her to understand him more. Her husband added: “We’re very fortunate. We get a lot of support from Emily’s family and obviously we have decent salaries.

“Unlike a lot of families that have these challenges we’re able to afford some help and support.”

The family moved from a two-bedroom flat into their current house so they could have a downstairs bathroom and schoolroom for John, who is educated at home.

Davey has tried to draw on her own family’s experiences in her work on Kingston council, where she now runs the housing brief. She is overseeing the biggest council housebuilding programme in the borough for four decades.

“We’re pushing for anybody who is physically disabled and chooses to live on a ground floor to be able to,” she said. “I had a constituent who told me when the lift was broken she had to carry her younger brother down the stairs to get to school. I’ve got people with mobility scooters whose neighbours are carrying them down tower blocks.”

She also wants councils to do more to help carers navigate the support that is available. “That carer is spending their time and energy on caring. We cannot expect them to surf the net, do all this research. Let them focus on the caring and you check in.”

She added: “If you’re physically and emotionally exhausted, then to be told: ‘Well, I’ll signpost you to this website and that one’ … your heart sinks.”

Her husband, who has campaigned for more workplace rights for carers, said: “What people in Westminster sometimes forget is that some of the more vulnerable people don’t get the support that is provided. It hasn’t reached the people who need it most. We have to get to the most vulnerable.”

The former housing lawyer has stood for parliament twice, regularly visits her mother in Dorset, runs one of the most demanding council briefs, canvasses across Kingston and cares for John, now 15, and Ellie. “I don’t care for Emily, she cares for me,” Ed laughed.

Davey added: “We both joined the party at the same time. We married when Edward was in politics; I knew what I was signing up to. In politics you can really change people’s lives. We do spend a lot of time talking housing, poor chap.”


Exclusive interview by Pippa Crerar

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