Charlotte's Story - Facing Up to the Challenge of Adult Disability Benefit

 Personal Independence Payment (PIP) is the new adult disability benefit, replacing Disability Living Allowance (DLA) for people aged 16 to 64 with disabilities or long-term health conditions.

Change can be a good thing but there’s always a risk of it going wrong – sometimes very wrong.

It’s a case of the latter that has motivated our Policy Manager Nick Medhurst  to write this blog post.

I’ll lay out my stall: I think PIP will work for some people with cystic fibrosis. It’s made up of two parts – one part provides financial support to help you with daily activities, and the other provides financial support with ‘mobility’ issues. So, in a sense, that is two potential support packages for ‘doing stuff’ and ‘getting around’.

I believe that if the letter of the law is applied, the majority of people with cystic fibrosis will get the support they deserve to help them with their daily activities.

I also believe that despite the myriad challenges that people with cystic fibrosis face in getting around – from breathlessness, fatigue, coughing fits and pain, to fear of infection and anxiety – that many people who desperately need that support won’t have any chance to get the support they deserve, because of another pathetic piece of miserly, ill-judged policy making.

So, theoretically, if you don’t need support to get around but some financial help to overcome daily barriers to leading a normal life will go a long way, then PIP will work for you.

However, theory is only theory. Many months ago, I was contacted by a mother in distress. Her daughter, Charlotte, was unwell and struggling. She was turning 16 and was told she must apply for PIP, as she was no longer eligible for children’s DLA or adult DLA given the change to PIP.

This dedicated, caring, loving mother was caught up in a bureaucratic nightmare of bad information, blind-alleys and complex processes. She and her daughter embarked on the PIP application without any support or quality advice and information. The government’s top-down, blunderbuss approach and insistence on farming out stages of the process to private companies meant that Charlotte and her mother had a million and one different points of contact but nobody could give them straight answers and they continued to forge ahead in the dark, as part of an experimental system.

Charlotte’s mother rang me. I did what I could to explain the theory of how the system should work and to help her make sense of the jumble of loose ends that was, laughably, referred to as an application ‘pathway’. We discussed options, plans-of-action, tips and strategies.

But I couldn’t help Charlotte how I would have wanted to. In the end, the system failed her. And then kicked her whilst she was down.

Charlotte, unwell and upset, was made to beg for the meagre support she had been denied – for both parts of the benefit – in front of a judge, at a tribunal.

She was denied again.

The complexities and bureaucracy of the system they entered is enough to numb the mind and becalm the drive and ambition of even the most resourceful. To subject Charlotte and her mother to such miserable and intimidating treatment, at such a difficult time, is heartless enough to be labelled cruel. What on earth did the endless stream of nameless officials think they were achieving?

It is my view that the individuals involved should feel ashamed as professionals and annoyed as taxpayers. What an utter waste of everyone’s time, money and energies.

Not everyone with cystic fibrosis will need welfare support but the reality is that most do and for the vast majority it genuinely is a lifeline, in the sense that it breaks down some of those financial and logistical barriers and facilitates people going out and living their lives and achieving their ambitions.

The Cystic Fibrosis Trust is utterly committed to ensuring that people with cystic fibrosis get the support they deserve on time, at the right time, first time. That should appeal to everyone, from the government, to the families and individuals that we exist for.

We are working directly with an equally committed group of specialist cystic fibrosis social workers from across the UK to help shape and design our work and ensure that our advice and action is as impactful and effective as possible.

Our Support Services team provide a helpline to share advice and information on a wide-range of welfare topics and handle many other issues and questions besides.

Our Policy and Public Affairs teams work to understand these challenges thoroughly and ensure that those who can make a difference, like politicians, know what a positive change is.

Our Media team will continue to speak out on behalf of everyone with cystic fibrosis to help everyone understand this complex and cruel condition.

Charlotte is heading to university this September. She will be realising a life-long ambition and embracing one of life’s best opportunities – to learn and excel and better herself.

What an abject shame that the government has missed the opportunity to support Charlotte to defy those challenges and meet the obstacles that cystic fibrosis throws her way head on. She’ll do it on her own, with the support of her loving family.

I wouldn’t call that the Big Society. Far from it. That’s our community and we’ll fight to the last.

 

If you want more information about cystic fibrosis and Personal Independence Payment (PIP), please read our guidance.

Have you applied for PIP? Tell us about your experience by emailing campaigns@cysticfibrosis.org.uk