“We are on your side”: Sangeeta reflects on 10 years of PIP
Many of you reading this will have heard of PIP, and some might have experiences of claiming for it. I’ve worked at the Trust for seven years and it continues to be a big topic in the CF community. In fact, it is the most popular enquiry I receive through our Helpline and the process of applying for PIP often causes a lot of worry for people with CF.
Before I reflect on the past 10 years, and the part the Trust has played in guiding people through the PIP process and campaigning to make the disability benefits system fairer, here’s a rundown of what it is. PIP is a benefit which replaced Disability Living Allowance (DLA) for adults over 16 making new claims. Having a long-term disability or illness can make your life more difficult and affect your income. PIP is there to help with additional costs of disability. It is based on a functional assessment, covering 10 daily living activities and two mobility activities. In March 2022, Adult Disability Payment was launched in Scotland to replace PIP. It’s based on the same criteria but using a different approach.
On your side
The rules for claiming PIP are stricter than DLA. We soon started to hear from people with CF who were struggling. We wanted to ensure that our community had the best possible practical support and understanding. The Welfare Advice Service was developed and I was recruited to help families with their claims.
I’ve worked with the Policy Team at the Trust to attend frequent PIP Working Groups with CF social workers. Together we designed resources that would empower claimants. One issue was that the assessors did not understand CF as it can be an invisible condition. We raised awareness by sharing stories and educating them on CF.
Up until mid-2016, people undergoing assessment for PIP were forced to undertake peak flow assessments and other respiratory function tests. Following complaints from the community, we raised the relevance and safety of these tests with the Department of Work and Pensions (DWP) and they were eventually stopped. We also took a case to the Upper Tribunal in 2020 about the burden of therapy involved with CF and how this should qualify for points in PIP assessments – and won!
More recently, we’ve responded to Government consultations on the benefits system and fed back your experiences after over 700 of you shared your views.
The rules for claiming PIP are stricter than DLA. We soon started to hear from people with CF who were struggling. We wanted to ensure that our community had the best possible practical support and understanding. The Welfare Advice Service was developed and I was recruited to help families with their claims.
Sangeeta
The future of PIP
Despite these important changes, we know there is still much work to be done to make sure the system is fair for everybody – and we will continue to campaign hard to make sure everyone can access the support they are entitled to. The success rate (the proportion of applications that are awarded PIP) has stayed roughly the same since 2016 at just 40%. But 70% of PIP appeals overall are won.
We are always here to support you to make your claim as strong as possible, by helping you to understand the rules and effectively challenge decisions when things go wrong. We are on your side.
Tips to help you prepare for a PIP assessment
Ask for help
You don’t have to go through this alone. Visit our website cysticfibrosis.org.uk/PIP, or contact our Welfare and Rights Advisor via our Helpline to ensure you’re clued up on the rules.
Keep a diary
From as early on in the process as you can, keep a diary as CF can affect you differently from day to day.
Be clear about your condition
It can be difficult for people to fully understand what CF is and how it can affect people. You should assume that people assessing your application know little about CF.
Be positive
Remember, you’re only asking for what you need to help live your life. Be confident and ask for what you deserve!
Transitioning from DLA to PIP can be a gruelling process, this is Jake's story.
Helpline
If you’re struggling with any aspect of cystic fibrosis, we’re here to help. Contact our Helpline for support, a listening ear or just someone to talk to.
Here to help
Our friendly Helpline team are here if you need us - whether you're looking for information, support, or just someone to talk to