Notes on Navigating PIP for Fibromyalgia

As a former Personal Independence Payment Assessor, I have witnessed the challenges faced by individuals diagnosed with fibromyalgia when applying for this benefit.

This condition, characterised by a range of variable symptoms, makes it very difficult for those affected to articulate their experiences and needs effectively when applying for benefits they are entitled to and, in many cases, are much needed.

Individuals with fibromyalgia are vulnerable to being overlooked and frequently don’t claim what is rightfully theirs. If this is you, please apply; these funds are there to assist you.

I have encountered many individuals who struggle with the complexities of fibromyalgia, and it is disheartening to see the emotional toll that comes with this condition.

Recent research is now confirming the belief that fibromyalgia is an autoimmune condition triggered by trauma. With this in mind, there is an expectation that a test will shortly be developed.

As a Specialist Trauma Psychotherapist, I witness the link daily between trauma and this autoimmune condition.

Many individuals living with fibromyalgia express feelings of frustration and isolation, particularly when they perceive that their experiences and symptoms are not fully understood or even believed by others, including healthcare professionals and close family members.

This lack of validation can exacerbate struggles, often leading to a sense of helplessness.

It is crucial to recognise that fibromyalgia is a legitimate medical condition that affects quality of life, often manifesting in chronic pain, fatigue, and a variety of other symptoms that can be difficult to articulate.

In my role, I strive to create a supportive environment where individuals feel heard and respected. I understand that the journey to receiving recognition and support can be challenging, especially when faced with scepticism about invisible conditions like fibromyalgia.

My goal as an assessor was to ensure that every claimant received a fair and accurate assessment based on their unique circumstances and experiences. By listening attentively and gathering comprehensive evidence of how fibromyalgia impacts daily living and mobility, I aimed to advocate for those who may have felt marginalised, many frequently struggling with feelings of shame for their inability to complete simple daily tasks.

My aim in this blog is to provide some practical insights and support that can help those with fibromyalgia navigate the PIP claiming process and encourage those eligible to claim.

(Where possible, get a healthcare expert to help you complete the application form).

Don’t be put off by the application form; complete it in bite-sized chunks! See it as your way to gather as much information as possible to support your claim.

• Accept that fibro fog may get in the way and seek help; the sooner, the better
• Ask for help; Citizens Advice or a friend or family member can assist too
• Complete a section each day, and it will soon be finished
• Make a note of the return date and ask for an extension if required
• Evidence is key
• Collect as much evidence as possible

The assessor who considers your claim will not contact your GP or anyone else for evidence, even if you ask them to.

**You must provide this evidence at the time of application.**
**Collect All Your Evidence**

• **Medical Evidence**
  – Diagnosis letters from healthcare professionals (doctors, specialists)
  – Treatment history, including medications prescribed and therapies received
  – Reports from physiotherapists, psychologists, or occupational therapists
• **Functional Assessments**
  – Copies of any assessments conducted by healthcare providers that evaluate your daily living and mobility capabilities
  – Evidence of how your condition affects your daily life and ability to perform tasks
• **Personal Statements**
  – A detailed personal statement explaining how your condition impacts your daily activities
  – Statements from family, friends, or caregivers who can attest to your difficulties
• **Care Plans**
  – Any care plans developed by health or social care professionals that outline your needs and the support you require
  – Evidence of any adaptations at work or changes to your working hours because of your symptoms
• **Prescriptions and Medication Lists**
  – Evidence of prescriptions and medications you are currently taking, including dosages
  – Include over-the-counter medications you purchase with receipts
  – Include side effects and any medications that have caused issues, such as loss of appetite, increased anxiety, or insomnia
  – Medications you have tried but could not tolerate or were not helpful
• **Hospital or Clinic Visit Records**
  – Appointment summaries or discharge letters from hospitals that detail your treatment and evidence of diagnosis (e.g., pain clinic referrals)
• **Diary or Log of Symptoms**
  – A diary documenting your symptoms, how they vary, and their impact on daily living over a period
• **Functional Limitations**
  – Evidence outlining specific tasks you struggle with, such as cooking, cleaning, dressing, or managing finances. Include any adaptations you have made to manage your symptoms
• **Witness Statements**
  – Testimonies from professionals who are familiar with your situation (e.g., social workers or support workers)

When preparing your claim, ensure that all evidence is clear, relevant, and up-to-date. The more comprehensive your documentation, the stronger your case will be.

Photocopy documents to send with your form; NEVER send originals.

The assessment is not dependent on diagnosis; it is about the impact your symptoms have.

For instance, two people can have the same diagnosis of osteoarthritis of the hip. One may have chronic symptoms and be wheelchair-bound, while the other may be an Olympic athlete with no symptoms and no impact on their daily life, yet both have the same diagnosis!

It’s about HOW your diagnosis impacts your daily living.

The areas looked at include aspects of:

• RELIABILITY
• SAFETY
• ACCEPTABLE STANDARD
• REPEATEDLY
• REASONABLE TIME FRAME

Reliability means completing an activity safely, to an acceptable standard, repeatedly, and within a reasonable time frame.

The assessor will look to ensure that the claimant can perform the task as described in the descriptor without causing harm to themselves or others, to a quality that is considered satisfactory, and as often as needed, without taking significantly longer than someone without a disability or medical condition would. It is the claimant’s responsibility to evidence that this is not the case.

This is where a claimant needs to provide evidence against this.

Key aspects of “reliably” in the PIP context:

• **Safety:**
  The activity must be performed in a way that is unlikely to cause harm, either during or after its completion
• **Acceptable Standard:**
  The activity must be performed to a level that is generally considered satisfactory or appropriate
• **Repeatedly:**
  The activity must be performed as often as reasonably required, taking into account the frequency with which a person without a disability or medical condition would perform it
• **Reasonable Time Period:**
  The time taken to complete the activity should not exceed twice the time it would take someone without a disability or medical condition, and the time taken should not be excessive

If attending an assessment in person, as soon as you are asked by the assessor at reception if they are okay to carry out an assessment and you agree, consent has been given, and the assessment has started, before you have even entered the office!

Please be mindful of this.

The assessor will be looking at how your symptoms impact you on the day. Listen carefully to any questions you are asked as you walk to the office.

It is imperative you tell the assessor what sort of day you are having at the time of the assessment.

Is this a good day, a bad day, or just an okay day for you?

You must clearly inform the assessor what sort of day you are having with your symptoms so they can gauge the impact your symptoms have on your daily activities and how often you experience these days.

I always asked claimants to ascertain a clear picture because of my experience with fibromyalgia, but please consider that not all assessors are aware of the difficulties with fluctuating symptoms. Be clear—this is unfair but true.

Additionally, if you are undergoing therapies like EMDR, you may ask your therapist to write a detailed report as evidence on how your fibromyalgia affects your activities of daily living in support of your claim.

A recent client of mine who came to see me for EMDR therapy for her trauma had previously completed her claim for PIP, and this was scored as zero in both sections of the claim.

Upon completion of my report supporting her claim at tribunal, she then correctly scored high in both areas and was awarded PIP at the higher level with a £13,000 back payment.

If you or someone you know is living with fibromyalgia, you might want to explore Eye Movement Desensitisation and Reprocessing (EMDR).

EMDR is a powerful therapeutic approach that helps individuals process traumatic memories and reduce their emotional charge, alleviating some of the physical symptoms associated with fibromyalgia.

By addressing the root causes of trauma, EMDR can lead to improved mental health and a better quality of life, providing relief from the debilitating effects of fibromyalgia.

If you’ve been struggling with both your physical pain and emotional distress, seeking out EMDR therapy could be a transformative step on your healing journey.

This therapy can be carried out in person and online. See my website for further details.

Remember, you are not alone in this journey; I understand.