What the DLA ruling means for CF

Policy Manager Nick Medhurst takes us through Wednesday's landmark ruling on DLA and why it matters for people with cystic fibrosis.

On Wednesday the Supreme Court ruled that the government’s decision to stop Cameron Mathieson’s Disability Living Allowance (DLA) payments, as he lay in the hospital where he would eventually pass away, was unlawful,  with judges labelling it “grossly unfair”.

The government had argued that they were “paying twice” for Cameron’s care.

Cameron had cystic fibrosis, Duchenne muscular dystrophy and other long-term health issues, and passed away in 2012 at the age of five, having spent over two years in hospital.

Cameron’s family continued to fight an injustice that hit them in their darkest hours, on behalf of everyone who has and will face the same situation.

The case revolves around a government directive, which demands that an individual’s benefits are stopped after they spend over 12 consecutive weeks in hospital. This is apparently “to prevent double provision” – in other words, the government don’t believe they should have to support a family financially, if they are already picking up the medical bill in hospital.

This fundamental misunderstanding – that an individual’s or a family’s need for financial support vanishes as soon as you step on to hospital grounds – is obviously wrong, something supported by research, conducted by Contact a Family and The Children’s Trust with families who found themselves in the same circumstances:

• 99% said they provide more or the same level of care when their child is in hospital compared to when at home.
• 93% said that their costs relating to their child's disability increase when their child is in hospital.

Increased travel, accommodation and food costs are simple examples but the reality is more complex and many families will find themselves significantly harder-up in such periods.

So Wednesday’s ruling is a very important victory in the fight to recognise the true costs of living with a long-term health condition or caring for someone with one.

Cameron’s father, Craig, told the BBC that the ruling “is a fantastic legacy for Cameron.” And its ramifications could be hugely significant for us as a community.

Cameron Mathieson was very young and very unwell when he passed away but his short life and his family’s courage to take forward the fight in his honour, struck a blow for everyone living with a long-term health condition who says that life is worth more than the cost of medical care.; We, as a society, must work hard to remove barriers to leading a happy and fulfilling life.

So when we hear nameless DWP spokespeople telling us that:

"Up to now, DLA has been suspended when a child is in receipt of long-term NHS inpatient care in order to prevent double provision - the taxpayer paying twice for the same thing. This has been the case for more than 20 years"

– we can say they were wrong and  that was 20 years too long, denying the basic support that can go some way to meeting an individual’s or a family’s non-medical needs, often when it was needed most. Their careless and miserly policy-making caused unnecessary pain and hardship.

For many people with cystic fibrosis – children and adults – welfare support is a vital lifeline, enabling work, socialising, education, exercise and physically getting to clinic. Cameron Mathieson’s legacy for the CF community is a renewed strength and resolve to tell society that we can turn a little basic support into much more and we can achieve great things.

For information on benefits, contact our helpline on 0300 373 1000.