Rob Burrows’ wife Lindsey reveals the strain of caring for her husband with MND while looking after their 3 children and working as an NHS physiotherapist

By Liam Last updated Feb 1, 2024

Lindsey Burrow has revealed the ’emotional and physical’ toll of caring for her husband, Rob Burrow, whose life has been devastated by motor neurone disease.

Since the former Leeds Rhino rugby star was diagnosed with the incurable and life-limiting condition in 2019, Lindsey has stepped in as his unpaired carer while looking after their three children and continuing to work for the NHS as a physiotherapist.

“Being a carer is hard and it has big emotional and physical challenges, I think a lot of carers that you talk to will say that you lose friends,” she said.

The 40-year-old is not alone in her battle – in tonight’s ITV documentary, Lindsey Burrow: Who Cares for Our Carers?, she explores the impact on unpaid carers in England and Wales, who provide care worth an estimated £162bn per . year, equivalent to another NHS.

Lindsey Burrow (pictured) has opened up about her experience of being an unpaid carer for her husband Rob Burrow

“I’ve been an unpaid caregiver for almost five years,” Lindsey said.

‘My husband Rob was diagnosed with motor neurone disease in December 2019, since then I have balanced caring for Rob while looking after our three young children and continuing to work for the NHS as a physiotherapist.

‘But while I’m proud to be able to do it, it’s had a huge impact on my life.’

The couple share three children together, Macy, 11, Maya, eight, and Jackson, four.

Rob, who was diagnosed in December 2019 when doctors warned he may have just two years to live, is unable to feed himself, dress himself or go to the toilet himself.

On top of his hectic schedule, Lindsey ran the Leeds Marathon last year, which Rob co-founded with his best friend and former team-mate, rugby union coach Kevin Sinfield, to raise awareness of motor neurone disease.

Last month, the Prince of Wales, 41, awarded Rob and Kevin a CBE for their efforts to raise awareness of motor neurone disease.

In her mission to discover the hidden demands unpaid carers face in their everyday lives, Lindsey visited Dame Arlene Phillips, 80.

Arlene cared for her later father, Abraham Phillips, for 12 years while he suffered from Alzheimer’s disease, which eventually meant he could no longer recognize Arlene.

At the time, Arlene was juggling her father’s needs with his job in the West End on the Starlight Express and raising her two daughters.

“I didn’t feel supported at all,” Arlene said. ‘I try not to think of myself as stupid, but I became one of the confused ones.

‘What I became was a wreck, an angry wreck.’

Highlighting that those taking on unpaid care roles need to learn on the job, Arlene said: ‘Where is the care training? People just go and do it.’

The former Leeds Rhino rugby star (pictured left) is now unable to feed himself, toilet himself or dress himself

Dame Arlene Phillips (pictured) joined the show to discuss her experience of caring for her late father

The 80-year-old told Lindsey she was juggling her West End job, bringing up her two daughters and looking after her father

Arlene’s father Abraham Phillips (pictured) suffered from Alzheimer’s disease and could no longer recognize his daughter’s face

She added: ‘Where is all this information going to come from? It’s like this mysterious world that you enter and what you find is that your world has been turned upside down.’

WHAT IS MOTOR NEURONE DISEASE?

Motor neurone disease is a rare condition that mainly affects people in their 60s and 70s, but it can affect adults of any age.

It is caused by a problem with cells in the brain and nerves called motor neurons. These cells gradually stop working over time. It is not known why this happens.

Having a close relative with motor neurone disease or a related condition called frontotemporal dementia can sometimes mean you are more likely to get it. But it doesn’t run in families in most cases.

Early symptoms may include weakness in your ankle or leg, such as finding it difficult to walk upstairs; slurred speech, difficulty swallowing, weak grip and gradual weight loss.

If you have these symptoms, you should see a doctor.

Source: NHS UK

Elsewhere on the show, Lindsey met Chrissie, whose 17-year-old son Alex was born with a rare genetic disorder and requires a high level of care.

Chrissie revealed that services in her area have been cut and have never recovered from austerity.

She used to take Alex to a day center for disabled children called The Belvidere Center once a week, allowing a rest period for herself.

Now Alex can only enjoy the center once a month due to cutbacks, meaning Chrissie struggles to find time for herself.

Lindsey also chatted with Iqbal, a caregiver for both her elderly mother and her husband, who recently suffered a life-changing stroke.

The mother-of-three traveled to attend a support group for black, Asian and minority ethnic carers called Touchstone in West Yorkshire, where carers can discuss the extra barriers BAME carers may face.

In line with the documentary, ITV conducted a poll of 2,000 people across the UK and found that 72 per cent of those who took part said unpaid carers are undervalued in the UK, while 66 per cent said the government is doing a “poor job” . ‘ by supporting unpaid carers.

A Government spokesman said: ‘Unpaid carers play a vital role in the lives of their family and friends, which is why we have increased Carer’s Allowance by almost £1200 since 2010. Carers may also be eligible for financial support through Universal Credit , including up to £2,200 extra for their care duties.

‘Local authorities are responsible for assessing unpaid carers in their area who need support and we have earmarked £327 million through our Better Care Fund this year, providing carers with advice, support, short breaks and respite services.’

Lindsey Burrow: Who Cares For Our Carers? – Tonight, ITV1 8.30pm and ITVX