Fibromyalgia and PIP

The symptoms of fibromyalgia often make it difficult to explain why points under the personal independence payment test should be scored. Clients talk about muscle pain where the main site moves around the body, as well as profound and debilitating fatigue, ‘fibro fog’ and memory/concentration problems. It can be a much less visible disability than many, and does not show up well at the snapshot assessments that effectively decide entitlement to benefits.

Things have improved somewhat as assessors, Decision Makers and tribunals will come across people with your condition far more than used to be the case, so there is a much greater acceptance that your problems are real. Fibromyalgia still seems to be a diagnosis of last resort, when other medical conditions have been ruled out. I am not aware of a blood test for it, for example.

Claiming while working

You should not be put off claiming simply because you are working. This in itself is not a bar, but you can expect to have questions put to you about any journey to and from work, as well as what your work involves. Some claimants see this as wrong and irrelevant, but you can expect to be asked about how you cope with any pets you may have, how you spend your spare time, how you deal with shopping, chores at home and any recent holiday or day trips, so why not look at how you deal with working? You may find that you have made adjustments, such as bathing the night before because you do not have the energy (or time) to do it before you leave for work in the morning. You may have had to pass some or all of the cooking to someone else. Think about when this move took place and why. It is not enough to say that you do not do something; the issue is whether you could, and what issues you would have, whether you would have to break up the task, whether there are safety concerns based on near misses or accidents, and whether you need to recover from the task before you go on to another. You may have the energy needed in one part of the day, but not later in the day. Guidance from the DWP to assessors is that if a descriptor applies any time during 24 hours, then it applies for that day, so think about how your ability varies within days, not just between days.

Food for thought

Remember that Preparing and cooking food should look at your ability to prepare a cooked main meal for one person, from scratch. Think if you have made a series of adjustments to reduce the effort involved or whether what you eat most of the time is really cooking from scratch at all. When and why were these adjustments made? 

When you think that the phrase ‘complex budgeting decisions’ covers preparing a personal or household budget, paying bills and planning for future purposes, you might find that this is something that you no longer do, or where you have made adjustments so that you don’t have to do it. Perhaps it has been largely passed onto someone else. Think about why that happened, and when it happened; it is often a gradual process. Don’t expect the assessor or Decision maker to appreciate it, but think whether you can carry out a task such as this “to an acceptable standard”, as the law puts it. You may have taken steps to deal with how your poor memory or reduced concentration now limits you.

Mobility

The Activity, Planning and following journeys covers a mix of problems. It is not easy to score under the ‘planning’ part. You might give examples of where this has gone wrong when you have tried to use a bus or train timetable to plan a route, especially where a connection was involved. We may be back to that phrase “to an acceptable standard”. Maybe your brain fog landed you on the wrong train, or resulted in you missing your stop, or you allowing buses to drive past you. When it comes to following the route of a journey, it can be difficult to show that you need someone to be with you, even on the route of an unfamiliar journey. 

For the physical side of walking, the Activity is called Moving around. Consider your ability to manage the distances on the claim form “as often as reasonably required”. This is the definition of ‘repeatedly’; without this, it is easy to think of it as doing the distance over and over again, but this is not what is meant. Think about the after effects of walking, the necessary recovery. Perhaps you take active steps to avoid two lots of walking on the same day.

How having the right advice can help

There are PIP regulations and Upper Tribunal case law that are helpful, but that is unlikely to help at the claim stage. Working with an experienced adviser will help; they will have an understanding of the problems that you face, even though no two people are affected in the same way. They will know what is relevant, what questions to ask you that you might not think to ask yourself, and will have an understanding of the law and case law that should influence what goes into your form, even if this would be more relevant if you had to challenge the decision made on your claim.

Your adviser will (or should, in our view) prepare you for your assessment, providing advice on do’s and don’ts, mistakes that others have made before you, explain the running order during the assessment and make sure that you are clear about what that assessor needs to hear and understand if they are to come to the same conclusion about entitlement that they did when helping you to complete your form. 

Preparing to claim

Steps that you might take in the weeks and months before you make your claim might include making sure that your GP is up to date on how you are affected (not just the big things, but what you may see as the lesser symptoms of poor memory, fibro fog and your concentration being affected), see if they will refer you to a specialist where this has not already been done, have your medication reviewed and contact your local authority to ask for an occupational therapy assessment to be carried out. Please remember to ask for a copy of their assessment as this could be supportive of your claim. Read it both to see what help and support it contains, and to see if there is information that would undermine what you have claimed. The same applies to the full assessment report from ESA or universal credit, if this has been claimed; the test is different, but that assessor’s findings may be supportive. Give them a call to request the report. 

Having done all that you reasonably can, you should expect to have to ask for a mandatory reconsideration of the decision, and to appeal the decision if you are still unhappy. Hope for the best, but prepare for the worst, as they say. Realistically, you may well have to appeal to an independent tribunal to get the right outcome. Your adviser will be able to work out with you just what that right outcome is; without that advice, it can be very difficult for a claimant to know what to accept from the Department, and what to challenge.