I’d lost my job due to anxiety and absence – a recurring theme in my life. I’d start a new job and the honeymoon period would quickly wear off, and soon the job would make me ill from stress, or I’d be off work for too long and get let-go.
So, when I was looking for a new job (again) I reached out to mental health charity, Mind, for support. When I explained how I needed an adaptable position and opened up about PMDD, the person helping me suggested that perhaps I should look into disability support.
I had never thought of myself as disabled, but actually my life is very much dictated by my PMDD. Once Mind had pointed this out to me, I asked my partner and friends for their thoughts and they all concurred that my life is so definitely affected by my disorder.
From there, I decided to apply for Personal Independence Payment (PIP) because the constant pressure to work was putting me through a vicious cycle of taking on more than I could manage and then getting laid-off.
After successfully being granted PIP for PMDD in April 2020, I wanted to share my tips and advice for anyone else who may be thinking of pursuing this journey.
What is PIP?
First of all, Personal Independence Payment is a UK government benefit to help with some of the extra costs if you have a long term ill-health or disability.
You can get between £23.60 and £151.40 a week if you’re aged 16 or over and have not reached State Pension age. The amount you get depends on how your condition affects you, not the condition itself. You can find out more about PIP and the application process here.
- You can get PIP whether you’re working or not
- You must be aged 16 or over and usually have not reached State Pension age to claim
- You must have a health condition or disability where you have had difficulties with daily living or getting around (or both) for 3 months or you expect these difficulties to continue for at least 9 months
Is PMDD a Disability?
Whilst PMDD does not claim automatic disabled status in the same way as conditions like HIV, MS and Cancer, it certainly can form a disability (under the Equality Act 2020) when the following individual circumstances are met:
- The impact on daily life is ‘substantial’ e.g. it takes much longer than it usually would to complete a daily task like getting dressed, leaving the house or attending work
- The condition is long-term’ which means it will last for 12 months or more
The PIP Application
The first form you receive will ask about how your condition affects you. To me, this was a very difficult form to fill out, as you have to pick out your worst symptoms, which makes you realise a lot of things about yourself as a result.
The focus for this form should be from the perspective of a very bad day. For example, instead of “I can go out when I feel well” you should write “during my bad days/weeks/periods I cannot go out”. It can be hard to recall your worst days fully, so ask for input from people with an external experience of your moods etc. if possible.
Before starting to fill in your form, familiarise yourself with the ‘descriptors’. Look at the different qualifiers and which you feel you fit. It’s worth working backwards from the descriptor to understand what information is required in your answers, in order to fulfil them. This can be awkward to do, as the forms are aimed primarily towards physical disabilities. To make yourself “fit”, sometimes you need to use some artistic license! And never think your information is too far from the descriptor – if it is relevant, it will be considered.
An important thing to remember is they will not dispute your condition. It’s entirely about how it affects you. It helped me to write down all of my symptoms and in what parts of my life they cause the most impact. For example:
a) sensitivity to sound – shopping, work, looking after kids
Be thorough with your answers and don’t worry about using extra paper. You can also ask for extensions on the deadline if you are struggling.
Once I filled in my form, I attached photocopies of my medication and all the information I could gather from my GP for free. You can request a full history, but this can come at a fee.
- Any letters from mental health teams
- CBT and therapy paperwork
- Mood diaries
- Gynaecologist letters
- I also asked my gynae to send a letter to my GP highlighting the impact of PMDD which was included in my medical records and PIP application
- Fit notes
- Letter from my GP supporting my diagnosis
- Medication information (photocopies of the leaflet inside the boxes)
- Current Prescriptions
- Treatment plans
All they ask is that you don’t send general information on your condition that is not personal to you. Honestly, you can’t send too much information here!
Sending your Application
Keep a copy of your answers and information for reference.
Send this via recorded delivery to the Department for Work and Pensions (DWP) so there can be no dispute on when your application was received. This is important, as it can be so disheartening if it miraculously gets lost in the post!
Once your application is sent-off, expect radio silence! You will get a text when your application has been processed and then probably nothing for a month or two, depending on your area and the backlog at the DWP. But, this gives you time to prepare for the next step, which is a face to face meeting.
This can be a very stressful part of the process. You should try and do as much as you can to feel supported at this time, as it isn’t a very empathetic experience. But, don’t be put-off, because it has to be done and is a great time to vocalise what you had written prior! Don’t hold back and wear your emotions on your sleeves, as it’s their first physical insight into your life with PMDD.
I would highly recommend buying 2 tape recorders with microphones and sealed tapes. This is so you have the meeting in solid evidence as the written information is someone’s interpretation of your experiences. The tapes have to be opened in front of the assessor to show they are new and not tampered with. I would also not wait for your interview date to begin sourcing this, as it’s such an outdated technology it’s difficult to find. And, you have to inform the assessment centre prior that you wish to record it. You can also have someone with you and they are allowed to note take, as well as have an input/advocate for you.
When you arrive, you will be seated in the waiting room and your assessment will begin as soon as you have entered that building. You will be called into a room and your assessor will begin.
Do not be afraid to take your time to answer the questions and ask the assessors to reword or explain what they mean. It’s important not to be led when answering the questions and try to repeat the information in your form.
A word of caution: the written report you receive afterwards is as hard as the assessment. Please put on your thickest skin and armour when reading it!
I was lucky to have been told by people what to expect – misinformation and a lot of copying and pasting of very irrelevant information that barely fits contextually into the box it is written. So, my advice is to take the report with a pinch of salt, as everyone’s reports are written this way. Even people with missing limbs have been scored zero on their assessments! It is hard not to take it personally and feel like you’ve hit another non-believer. But, trust me: don’t be put off.
After this you will receive the DWP’s decision. This will go in favour of the assessor, more often than not. The document will have a similar copy and paste vibe and may be infuriating to read. So, prepare yourself emotionally for what feels like a negative outcome, initially.
Making an Appeal
If you’ve been unsuccessful and your claim is rejected, the next step is mandatory reconsideration. When writing this, you will need to cross reference your original ‘how your disability affects you’ form, with a copy of your assessment, your rejection letter and any notes taken at the face to face interview.
Don’t be afraid to repeat yourself in this letter. If they can copy and paste, so can you! Work through the rejection letter section by section, disputing each inaccuracy and using evidence from the afore mentioned sources. It doesn’t matter how long your letter is – also, don’t worry about including any new information (if you have any) as you can send this at a later date if needed, in tribunal.
Next, you should receive a decision regarding a mandatory reconsideration. It will either be successful and you will get your entitlement or it will be another rejection. Again take it on the chin because as ridiculous as it is, it’s just another part of the process. We are used to jumping through hoops with our treatment plans. Think of this in the same way!
If it’s a rejection, your next step is a Tribunal. It’s not as scary as it sounds. You write a letter to request a tribunal. It is the same idea as a mandatory reconsideration: you pick apart your rejection and build your case on the falsities and misinformation in the letter sent by the DWP, referencing all the relevant information required as you go. But, you don’t have to give all your information here, as it’s just the request.
You will then receive a confusing letter from the DWP requesting the tribunal doesn’t go ahead. This is a copy of what has been sent to the court. It isn’t written to you personally and you don’t have to reply to it.
After this, you’ll get a big bundle with all the information you have ever sent, plus your assessment and all the letters of decisions from the DWP. This is the information the court will be using for the tribunal. It’s the same as yours, so don’t be intimidated by how much is there! At this stage, you are also able to send any further information you would like to give the court to consider. I got my family and friends to write letters of their accounts and experiences. This was used in my final tribunal so was a valuable addition. I also collected information from IAPMD and reached out to them for resources I could use.
Preparing for Tribunal
I got a tribunal date at my local court 1 year and 4 months after my initial application. To prepare, I would suggest refreshing on what you’ve written and the discrepancies in the DWPs decisions, as this is the main focus of the tribunal.
The tribunal took place in a small room with a panel of 3:
- A Judge
- A GP (or health professional)
- A disability specialist
You may or may not have someone from the DWP who will sit beside you facing the panel. You are not obliged to talk to this person.
Frustratingly, my tribunal was adjourned at the first hearing, as the panel requested my full medical history for the past 3 years. After thinking about it, I’m grateful they did this, as they didn’t feel they could make an informed decision at the time. This is mainly because they didn’t have a deep enough understanding of the extent of the disorder. And, I’m glad they admitted this after a discussion of my symptoms.
My final tribunal wasn’t long after they received my medical records. The second tribunal had a whole new panel entirely, which meant I could start a fresh, armed with more information.
This tribunal was held via phone due to Covid-19. Again, there are 3 people and the phone is passed from person to person and they speak 1 at a time. They will ask you questions in turn. And it’s your chance to explain (again!) how much PMDD affects you. Still focus on your bad days and try to form answers that relate to the descriptors from your original form.
You will either receive your answer at the tribunal or via post. Make sure when you receive your decision that you are well supported, safe and with people who understand you.
- Be prepared to follow this journey (which may be long) to the end
- Unfortunately, being rejected is part of the process. Keep a thick skin and your chin up.
- Don’t worry about feeling like you are catastrophising your life – you have to focus on the negative impacts of PMDD.
- Be honest and raw in your answers and be prepared for facing some difficult truths about the impact PMDD has on your life, in its entirety.
- Focus on self-care while you’re on this journey and recognise your stress levels. Talk to others and do not do this alone.
- Make sure you give yourself credit for dealing with PMDD!