My struggles with PIP

This week’s blog is being posted anonymously by a nurse with Long Covid. In it she reflects on how difficult it has been applying for PIP (Personal Independence Payment).


I had the idea of writing this blog a good few weeks ago but it has taken me a while to really get the motivation to write it. I thought it would be a good topic to write about but as I reflect on my experience with PIP (Personal Independence Payment) so far, I think I am just deflated hence the lack of motivation. So far it has been a truly demoralising experience. However I urge any of you with Long Covid to apply as I feel the more of us that do the more they will learn about this condition. And maybe one day they will realise that their assessment is not fit for purpose.

First application for PIP

When I first became really unwell in the Spring/Summer of 2021 a few health professionals advised me to apply for PIP. At the time my fatigue was so severe I hardly left the house and when I did I walked very little, drove short distances and really didn’t do much at all. The health professionals felt that I would definitely meet criteria and I should apply so I trusted them and took their advice.

As a community children’s nurse I had filled in many a DLA (Disability Living Allowance) form with parents and been successful on first application. I had just helped my sister apply for her daughter with Autism and ADHD so how hard could this be? I was very naive as to how different PIP was and how the Department of Work and Pensions would deal with the application. But I also naively thought that after paying my taxes and national insurance and advocating for others for 22 years then I would be entitled to some help now I was suffering.

I diligently filled out the form thinking I was giving enough information about my difficulties. I felt that as a nurse I would be able to get across the severity of my Long Covid symptoms and how this was impacting my life. About 6 weeks later I had about a 2 hour phone call with an assessor who was very empathetic to my issues and I really thought I was in with a chance! However a few weeks later I received the letter back from them and I had been awarded 0 points. Although frustrated I just accepted it. At this point I knew little about the process so I did not apply for mandatory reconsideration. I improved enough to return to work later that year on reduced hours so I thought no more of it.

Second application for PIP

When I caught covid again in February 2022 my long covid deteriorated and by early summer my symptoms had exacerbated enough that again a few health professionals advised me to apply for PIP. I knew a bit more having read other’s experiences on Facebook pages. But this time I sought advice. I read all the information on the Citizens Advice website.  My private health practitioner who was treating me for Long Covid and vaccine injury wrote a supporting letter and gave me tips on how to explain my problems and issues. I even completed the form whilst having hyperbaric oxygen therapy! I took my time writing it and explained my history and current symptoms in more detail. I hoped that now Long Covid had been around for a while then it would be more widely understood by the Department of Work and Pensions.

This time it was 3 months after applying that I had my phone call with an assessor. My private medical practitioner joined the call to help me advocate for myself and explain the severity of my Long Covid symptoms. Again, I had a really empathetic assessor who took her time to really understand my difficulties. Since applying I had actually deteriorated further and I was now on oxygen at home for about 4 hours a day. My daily routine was and still is full of oxygen therapy, supplements, medication, meditation, red light therapy, resting, napping as well as trying to be a mum, a wife and be ‘me’. I had been off work for almost a year. I knew that a lot of the questions were not relevant to me and were just being asked as part of the process but I felt that the severity of my treatment plan would give me enough points to be awarded PIP.

About 6-8 weeks later I received the letter back from PIP and this time I had been awarded points but not enough to receive payment. How could I not qualify? My husband walked in shortly after I opened the letter and I burst into tears. This time I was angry…how sick did you have to be to qualify? I wasn’t well enough to work but I was too well for PIP? It just didn’t make sense.

Going for mandatory reconsideration

I am currently going through mandatory reconsideration after again seeking more support from the RCN welfare team so I can’t go into details about my case but one thing that has really struck me with the assessment is that if you are able to manage your own treatments you will not be awarded points in that section. So although I am on oxygen for 4 hours a day and numerous medications and supplements, as I am able to manage this myself and turn the button on to my oxygen I don’t need help and therefore don’t get any points. It does not seem to matter how long your treatment is, if you are independent with it then 0 points. 

This process started in July 2022 and it is now February 2023 and part of me has wanted to give up many times but unless more of us with new conditions like Long Covid apply then the Department of Work and Pensions won’t get to see the numbers who are struggling and require help. I have been told that it is hard for conditions like Long Covid to fit their assessment boxes. I certainly don’t have the energy to fight their assessment criteria but the whole process seems unfit for purpose and certainly does not seem to support those like me who can function minimally but are too sick to work.

I will wait to hear about my mandatory reconsideration but I hold out little hope. I am not sure I have the energy to go to appeal but I will consider it. After trying lots of treatments and spending quite a bit of money I am slowly improving. I understand that at appeal they assess you at the time and not retrospectively so I am not sure I can deal with that stress. I think what the hardest thing of all is that I truly thought that when you got ill you would get support but for those of us with Long Covid we are stuck. A new condition not recognised by the medical world, the government, and sadly for many of us those closest to us.