Reverend Mpho Tutu (C), CEO of the Desmond and Leah Tutu Foundation, participates in the Ice Bucket Challenge in Cape Town. Photograph: Getty Images.
Show Hide image

Stop throwing cold water on the Ice Bucket Challenge

Motor Neurone Disease merits its moment in the spotlight.

"My Dad shouldn’t die without a voice". These are the words on the poster that I pass every day on my tube journey into work. Lots of Londoners will have noticed it in recent months - it features a father, Mark Samsom, and his daughter. Mark has Motor Neurone Disease (MND), a progressive disease that causes increasing loss of mobility and difficulties with speech, swallowing and breathing.

I first became aware of MND when one of my neighbours Gareth, a Dad with three young children, was diagnosed with the disease in 2010. I’ll admit, I didn’t know a great deal about MND. But I know Gareth found the Motor Neurone Disease Association (MNDA) charity incredibly supportive and vital in helping him and his family through difficult and challenging times. He was central in helping our local charity, Furzedown Annual Charity Events (FACE) raise the funds to help MND South London provide grants and equipment to support other families living with MND. Sadly, Gareth passed away in March 2012, and is still much missed.

So when my local branch, MND South London, got in touch and asked to meet with me, I was interested to learn more. As a busy MP, I have a lot of meetings. But this one with Sarah Tucker, the MND South London Chair, and Evelyn Hayward, a volunteer, was one I’ll always remember. We sat out on the Terrace here in Westminster and spoke for an hour, both about our personal experiences, and about the work of MND.

I learnt that few conditions are as devastating as MND. It is rapidly progressive in the majority of cases. People with MND will, in different successions and combinations, lose the ability to speak, swallow and use their limbs. More often than not, the individual will remain mentally alert as they become trapped within a weakening body. The disease is always fatal – with half of people with the disease dying within 14 months of diagnosis. There is no cure.

The work MNDA do is hugely inspirational. They are the only national organisation supporting people affected by MND in the UK, with approximately 90 volunteer led branches and 3,000 volunteers. Their vision is of a world free from MND. Until that time they aim to do everything they can to enable everyone with MND to receive the best care, achieve the highest quality of life possible and to die with dignity. When asked if I would be interested in becoming a Patron for the organisation, I was delighted to accept.

Since then I’ve learnt a lot about the disease. I’ve attended meetings, and heard from inspirational speakers such as Professor Brian Dickie, Director of Research Development at MNDA. I’ve watched films like I Am Breathing – which follows the story of Neil Platt, who within a year from diagnosis goes from being a healthy 30-something British bloke to becoming completely paralysed from the neck down. And I’ve read stories from people like Gordon Aikman, Director of Research for the pro-UK Better Together campaign – whose recent article in the Scotsman I can’t recommend highly enough.

So when I see what a difference the #MNDIceBucketChallenge has made, both here and in the US, I welcome it. There are approximately 5,000 people living with MND in the UK, and the #IceBucketChallenge is doing great work to increase public awareness and understanding of the disease. I know from experience how hard it is for those with MND, those like Sam, Neil and Gordon to consistently explain the diagnosis of MND to everyone they meet, including healthcare professionals. Raising awareness helps to address this. Let’s let MND have its moment in the spotlight.

It was only a matter of time before lo and behold, I received my own nomination. And I was proud to donate to the charity before standing outside Tooting Broadway tube in my constituency, in the drizzling rain, and have Evelyn throw a bucket of iced water over me. I like to think that somewhere, my friend Gareth would have been laughing.

Sadiq Khan is the MP for Tooting and a Patron of MND South London. You can view his #MNDIceBucketChallenge here, and to donate, please text ICED55 £5 to 70070.

Sadiq Khan is MP for Tooting, shadow justice secretary and shadow minister for London.
Show Hide image

Universal Credit takes £3,700 from single working parents - it's time to call a halt

The shadow work and pensions secretary on the latest analysis of a controversial benefit. 

Labour is calling for the roll out of Universal Credit (UC) to be halted as new data shows that while wages are failing to keep up with inflation, cuts to in-work social security support have meant most net incomes have flat-lined in real terms and in some cases worsened, with women and people from ethnic minority communities most likely to be worst affected.

Analysis I commissioned from the House of Commons Library shows that real wages are stagnating and in-work support is contracting for both private and public sector workers. 

Private sector workers like Kellie, a cleaner at Manchester airport, who is married and has a four year old daughter. She told me how by going back to work after the birth of her daughter resulted in her losing in-work tax credits, which made her day-to-day living costs even more difficult to handle. 

Her child tax credits fail to even cover food or pack lunches for her daughter and as a result she has to survive on a very tight weekly budget just to ensure her daughter can eat properly. 

This is the everyday reality for too many people in communities across the UK. People like Kellie who have to make difficult and stressful choices that are having lasting implications on the whole family. 

Eventually Kellie will be transferred onto UC. She told me how she is dreading the transition onto UC, as she is barely managing to get by on tax credits. The stories she hears about having to wait up to 10 weeks before you receive payment and the failure of payments to match tax credits are causing her real concern.

UC is meant to streamline social security support,  and bring together payments for several benefits including tax credits and housing benefit. But it has been plagued by problems in the areas it has been trialled, not least because of the fact claimants must wait six weeks before the first payment. An increased use of food banks has been observed, along with debt, rent arrears, and even homelessness.

The latest evidence came from Citizens Advice in July. The charity surveyed 800 people who sought help with universal credit in pilot areas, and found that 39 per cent were waiting more than six weeks to receive their first payment and 57 per cent were having to borrow money to get by during that time.

Our analysis confirms Universal Credit is just not fit for purpose. It looks at different types of households and income groups, all working full time. It shows single parents with dependent children are hit particularly hard, receiving up to £3,100 a year less than they received with tax credits - a massive hit on any family budget.

A single teacher with two children working full time, for example, who is a new claimant to UC will, in real terms, be around £3,700 a year worse off in 2018-19 compared to 2011-12.

Or take a single parent of two who is working in the NHS on full-time average earnings for the public sector, and is a new tax credit claimant. They will be more than £2,000 a year worse off in real-terms in 2018-19 compared to 2011-12. 

Equality analysis published in response to a Freedom of Information request also revealed that predicted cuts to Universal Credit work allowances introduced in 2016 would fall most heavily on women and ethnic minorities. And yet the government still went ahead with them.

It is shocking that most people on low and middle incomes are no better off than they were five years ago, and in some cases they are worse off. The government’s cuts to in-work support of both tax credits and Universal Credit are having a dramatic, long lasting effect on people’s lives, on top of stagnating wages and rising prices. 

It’s no wonder we are seeing record levels of in-work poverty. This now stands at a shocking 7.4 million people.

Our analyses make clear that the government’s abject failure on living standards will get dramatically worse if UC is rolled out in its current form.

This exactly why I am calling for the roll out to be stopped while urgent reform and redesign of UC is undertaken. In its current form UC is not fit for purpose. We need to ensure that work always pays and that hardworking families are properly supported. 

Labour will transform and redesign UC, ending six-week delays in payment, and creating a fair society for the many, not the few. 

Debbie Abrahams is shadow work and pensions secretary.