Pip and chronic lymphocytic leukaemia

Henny5

Hi

Has anyone been successful in being awarded pip with CLL? I also have to have plasma infusions as I have a damaged immune system which means I am unwell most of the time and at risk of serious infection which has a huge affect on my well being and day to day life. If anyone has been lucky enough to be successful, could you please advise me on how to answer the questions on the form. Thanks so much 😊

Trevor_PIP

https://forum.scope.org.uk/discussion/140381/pip-and-chronic-lymphocytic-leukaemia

To get PIP, you must have problems with daily living, moving around or both.  A cancer diagnosis in itself does not make you eligible for PIP, so you need to be able to show the impact your illness or treatment has on your day-to-day life. You must have had difficulties with daily living tasks or mobility for 3 months and expect them to last for at least another 9 months.

PIP is not about your diagnosis, but it helps, it's about how you are affected day to day by your disability. From what you have said, apply for PIP. With the form you go in to detail on how your disability affects you per descriptor. Medical evidence is good too. Macmillan Cancer Support website has excellent PIP information and on applying for PIP. One of their advisers could help you too.

Henny5

Hello

Thanks for replying, I understand that, but I was asking if anyone with the condition has been successful with their claim

MW123

@Henny5

I really appreciate how difficult this is for you and how gruelling and draining the treatment can be.

I live with MDS myself and have successfully claimed enhanced PIP for both daily living and mobility, with a ten‑year award. That shows the system does recognise how serious blood disorders are in terms of everyday functioning. PIP isn’t awarded for the diagnosis itself, but for how your illness affects daily life.

Instead of just saying “I have CLL,” you need to explain the impact. For example, whether fatigue or infection risk stop you from preparing food safely, since foods often need to be cooked at high temperatures to kill bacteria, this can be difficult when your immune system is compromised. If exhaustion means you risk falling asleep while cooking, that is also important to highlight as it shows the safety issues you face.

Chopping and preparing food can be dangerous if you have low platelets, as even small cuts could lead to severe bleeding. You might need to follow a special diet to reduce infection risk, take nutritional supplements, or rely on others to help you remember and manage medication.

You can also describe how being unwell most of the time limits social contact, how brain fog or fatigue affects concentration and managing finances, and how mobility is restricted. Planning journeys may be difficult because of infection risk, meaning you are not able to use public transport, and fatigue or weakness can limit walking distances.

Letters from your oncology team about the impact of chemo and CLL, for example severe fatigue or immune suppression, can strengthen your case.

It often isn’t until you sit down and think clearly about how your life has changed since diagnosis that you realise just how debilitating and life- restricting living with blood cancer can be. Fatigue, infection risk, and the constant adjustments to everyday tasks all add up, and it’s those details that make the difference when you’re setting out your claim.

I know a few people undergoing treatment who also receive PIP, and some have phoned Macmillan support who helped them fill in the forms, which they found really useful. The better you can explain how your condition affects your daily life, the more chance of success you have.

Trevor_PIP

https://forum.scope.org.uk/discussion/comment/1088656#Comment_1088656

Excellent!

Henny5

MW 123

Thank you so much for this, I really think this is useful. I tried to claim for cll but got refused, they just didn't seem to understand my day to day life and I found it difficult to explain. Can you tell me how I could contact Macmillan for this advice please. I hadn't thought of the infection side of things if I cut myself but it is so right. If you have any other suggestions I would really appreciate them

Thanks so much ⭐

Trevor_PIP

@MW123 (the post above)

chiarieds

Hi @Henny5 - You can phone Macmillan on 0808 808 0000 8am - 8pm 7 days a week. Please see: https://www.macmillan.org.uk/about-us/contact-us

For benefits advice it looks like it would be 8am -6pm Mon - Fri.

This is also an important read, especially the section on 'Reliability:' https://www.gov.uk/government/publications/personal-independence-payment-assessment-guide-for-assessment-providers/pip-assessment-guide-part-2-the-assessment-criteria#reliability-1

Henny5

@chiarieds

Thank you, I will take a look 😊