Russell Fleming, Content Manager, ME Association.
We last heard from a mother who recounted her daughter's experience of the far from satisfactory Personal Independence Payment application and appeal process.
Today we hear from a woman with severe M.E. who while winning at the mandatory reconsideration stage, decided to continue her fight for fairness and justice and took her case to appeal.
She kindly shares what she has learned of the migration and the appeal process, and her experiences might help others who face similar problems.
We also hear some useful tips, including how important it can be to plan in advance, to have good support and to use as much medical evidence as you can get.
My battle for PIP
When that renewal letter arrived, I knew I was in for a fight and that I would need help to do it.
Luckily, I was blessed with a very supportive husband.
I also had a good friend who had known me for years, who understood M.E. (her daughter suffered with it), and who was an awesome warrior when she got the bit between her teeth.
With my DLA due to end in February 2018, we started work on the PIP application in October 2017.
We met twice a week for a couple of hours as that’s all I could manage. My friend would then work through what we’d discussed and research how best to fill in the form.
After only a few meetings I felt it getting harder and harder. I think having to put yourself into your ‘worst day’ mindset to answer the questions had something to do with it.
- I fight every day to be positive. I’m thankful for all my blessings so it’s hard having to look on my life in such a negative way, examining every detail in light of what I can’t do.
But we did it and the application went in the post at the end of November 2017.
Then came the dreaded medical assessment. Both my husband and my friend came with me and I’d urge anyone going to a medical assessment to take support.
I won’t go into details about how the assessment went as I really want to focus on the PIP appeal, so you can guess it wasn’t a success! When I came out of the assessment, I cried.
It wasn’t that it was particularly bad, but it was intense and exhausting.
I was so hesitant about opening the brown letter when it arrived with the decision, but knew I had to. I’d convinced myself I was prepared for it to say I’d totally failed but I wasn’t really.
Reading the ‘PIP award letter’ was hard. It was worded that ‘she [me] said she couldn’t do […], but I [the assessor] think […]’. It contradicted what I had said and what I could actually do.
It felt like she was calling me a liar based on a snapshot assessment.Considering how used to being disbelieved I am I was actually surprised by how much that hurt.
But those around me kept me strong and we immediately applied for a mandatory reconsideration.
- This is when we got a copy of the medical assessment which showed the lack of understanding about M.E. and the restrictions it can impose on daily function etc.
Medical assessment report
The medical assessment report was littered with mistakes, as well as misleading and irrelevant statements. I’m not going to list them all but will mention a few:
- The assessor, a supposedly qualified physio, seemed to think that because I was able to get onto the medical couch from a standing position, I must be able to get in and out of a bath unaided. This is something I haven’t been able to do in over 6 years!
- I was also supposedly witnessed propelling my wheelchair, something I can’t do because of pain and fatigue in my arms. We think me putting on the brakes while I was there was mistaken for me moving the wheelchair; but that’s a big mistake to make!
- Another issue, a vital one, seems to be the inability to differentiate between cognitive and mental health issues. Because I have no mental health issues my brain therefore must function normally, according to them. There was no acknowledgement of ‘brain fog’ and the reduction of cognitive function.
Looking through both the ‘PIP award letter’ and the medical assessment report we discovered why I hadn’t been awarded mobility. The issue was regarding what was really a trick question.
Mobilisation and personal care
Being used to answering how far I can walk, I was caught off guard in the medical assessment by being asked how long I can walk for. It threw us and, with the assessor pushing for an answer, we had to guess.
However, the DWP used this guess to determine the distance I could walk – a calculation that was wrong. For the mandatory reconsideration we refuted the mobility issue, explaining how we felt the question was misleading, and that we were put under pressure to answer it.
- Firstly, washing and bathing. We explained how there’s no way I can get in and out of a bath unaided and how ludicrous it was for the assessor to state that I could.
- Then the cognitive issues of reading/writing, communication and budgeting. According to the DWP complex reading is 2 sentences which I can obviously do.
- My communication skills seemed to be judged on how well I coped with meeting the assessor when it was my best time of day, in a quiet room and with the support of my husband and friend. They don’t seem to consider any other situations.
- For the budgeting, as most will know, you’re asked to subtract a sum from 100. You can work it out on paper if you want. I got that wrong but corrected myself. It seems that because I was just about capable of doing that, I could make complex budgeting decisions!
All of these were dealt with in a letter from my husband as well as a report from my friend which took the medical assessment apart, dealing with each and every error.
A win but still not fair
Some might say that I won the mandatory reconsideration because they did agree to award me enhanced mobility.
To recap: for mobility I went from higher DLA to nothing for PIP and then to enhanced PIP with the mandatory reconsideration. But I had received no explanation or apology, of course.
However, we still weren’t happy with not being awarded more points for personal care. So, after more discussion and thought we decided to go to appeal.
My husband sent a letter to the appeal tribunal stating that there hadn’t been enough understanding of my limitations, physical and cognitive.
He listed each activity and described my ability (or lack of) and, importantly, the effect doing those activities had on me. He also stated which ‘descriptor’ we felt was relevant to my situation.
He referred numerous times to my consultants’ and GP’s letters (which I also think is vital) and he highlighted how just going through this process was having a detrimental effect on my health.
Having heard horror stories about going to appeal I was worried but will say that it was better than I expected.
To recap: I had been awarded standard rate for personal care. I needed 4 more points to get the enhanced rate and was appealing the decision based on the areas I’ve mentioned:
- Washing and bathing,
- Reading, signs, etc.,
- Communicating with people,
- Making complex budgeting decisions.
Best not done alone
The appeal panel consisted of a judge, a doctor and a disability specialist. It was the latter who asked most of the questions. I went in with my husband as my legal representative and my friend as support.
- I’d urge anyone going through this not to go in alone.
The judge was very clear that it was me that needed to answer the questions. If my husband and friend tried to add something, she asked that they keep it to the end so be prepared for that.
It put the pressure on me, but I understood the rationale. They needed to hear it from the horse’s mouth.
- The disability specialist asked very detailed questions about what I did during the day, how I managed to shower, etc.
- What surprised me was that after he finished asking about washing and bathing, he went on to getting dressed and undressed, which was something I wasn’t disputing.
- He then moved on to the cognitive side, which was a lot harder, but I expected that.
- He was thorough but not rude or aggressive in his questioning and seemed more understanding than I had anticipated.
- I was again surprised when he used the term ‘payback’. He was acknowledging post-exertional malaise (PEM) and he brought it up before I did.
- He seemed to have a fair grasp on the fact that whenever I did anything there would be repercussions. And I took this as an encouraging sign.
Once he was finished the judge asked the doctor if he had any questions. He said he didn’t as I’d covered all the medical side in my paperwork.
I can’t remember if the judge actually asked me anything, but she then allowed both my husband and friend to speak.
It had lasted just over 30 minutes. We were then thanked and ushered out to wait. This took another 20 minutes before we were called back in for the decision.
The judge said my appeal had been successful and that I’d been awarded the enhanced rate for personal care! There was no discussion or chance for questions, and I left in a state of shock…
Success and extra points…
We were given a Decision Notice which showed where the extra points came from:
- I gained 2 points for washing and bathing,
- I received no extra points for reading, communicating or budgeting (which was a disappointment but didn’t surprise me),
- And I gained 2 points for dressing and undressing, which I did not expect!
What’s even stranger is that I don’t fully fit the descriptor they’ve given me for dressing and undressing.
They’ve given me (e) which states I need assistance. I never said I had help getting dressed or undressed other than getting my boots on or off.
I just described the fact that I don’t dress properly unless I go out which isn’t often anymore, how long it takes me, the pain I’m in doing it and the fact that I then have to rest before going out, so I can recover. I never mentioned a need for any help.
When I was being questioned about the cognitive side, they showed a bit of frustration with how complex reading was just 2 sentences, etc. I got the feeling they felt the descriptors weren’t adequate, that the bar had been set very low.
This made us wonder if they felt I deserved the cognitive points, but their hands were tied so they did what they could and awarded me the extra points elsewhere. That may not be the case but that’s the feeling we came away with.
Medical evidence and personal support
What I would say is that I didn’t feel interrogated or cross-examined by the tribunal panel. I didn’t feel they were doubting what I said or believed I was lying. Several times the doctor was nodding his head in response to what I was saying which was also encouraging.
In other words, the more evidence you can give them the better. I was blessed to have the support of my husband and friend who put in a lot of hours preparing for each stage of my PIP from application, to medical assessment, to mandatory reconsideration and then to appeal.
They wrote reports detailing every point we disputed, every mistake made, repeating the truth again and again. And we included a lot of independent evidence, with letters from consultants, my GP, an ‘adult social care occupational therapy report’ as well as a letter from a friend experienced with disability.
- A lot of hours and a lot of paperwork! It shouldn’t have been necessary… But it was worth it.
If you have to go to mandatory reconsideration and appeal, then go through the medical assessment with a fine-tooth comb. Write a report refuting every mistake, every misleading or inaccurate statement.
- Get as much medical back-up as possible. My original application included letters from my 2 consultants and my GP, but I went back and got them to write new ones for the mandatory reconsideration.
- I suggested words to use, like not being able to do things ‘repeatedly, reliably, safely and in a timely manner’. I asked that PEM be mentioned and the variability of what I could do between not only different days but between different times of the day.
- If they’re good doctors, then I’m guessing they’re having to deal with this a lot and are getting very frustrated by it. I know both of mine are!
Other evidence that might have helped:
- I had been planning on asking to be referred to the pain clinic to reassess my pain relief and to see if there was anything new/different I could try. My GP was very happy to refer me especially as it looks good on a PIP application that I’m looking into new treatment.
- I was also referred to the county council for an OT assessment to look at adaptions to my home, specifically a disabled shower. The DWP may have ignored that report but it held a lot of weight with the disability specialist at my appeal and it helped I think get those extra points for washing and bathing.
- I also had a letter from a friend of many years who is a blue badge manager so was able to write with knowledge of me, of disability and with experience of how the DWP works.
Use your friends. If you have any with relevant experience, I’m sure they’d be happy to support you with testimonies as well as with any professional statements if applicable.
I believe it is really important that you don’t tackle this alone. Don’t go to the medical assessment or appeal alone. Take whoever knows you best, be that a partner, a parent, or friend.
- It’s also helpful to have that someone take notes, particularly in the medical assessment. My friend’s notes highlighted some of the errors that were made and so it added to the evidence at appeal.
It’s not only for practical reasons you need someone with you. You also need that emotional support. To be able to come away and collapse into tears with someone who was there so knows what happened, what was said, is so important.
Of course, for some people, the only way to obtain the deserved help they need is to endure the process alone. Not everyone has the support network in place that I do. But even with my husband and friends it was far from a smooth challenge.
Fairness and Justice
We made the decision to go to appeal because we wanted to ensure the truth was recognised.
In 4 years time I’ll have to fight this battle again. Who know what my health will be like then, so we wanted my DWP file to be as accurate as possible to give us a good foundation.
I was also very aware that I was in a position to appeal, with the support I had, so I wanted to add my name to those standing against the DWP, stating that they got it wrong, for those who can’t.
Because I had such amazing support, practically and emotionally and spiritually through prayer, I managed to endure.
I’ve also given my friend permission to use my experience as a case study as she’s now active on M.E. forums with regard to benefits. It’s the least I can do.
My health has deteriorated. I know one of my consultants is concerned that I won’t recover, that this is my new baseline. I’m praying that isn’t the case but, if it is, then I still feel it’s been worth it to stand up for the truth.
Thank you if you’ve made it through to the end. I know it was a lot of reading!
Final question for the reader
Now my question:
Have you been through an appeal process where you were awarded points for something you hadn’t disputed?
Image copyright: 123RF/ Ian Allenden
ME Association Ramsay Research Fund Christmas Appeal
Help us do more for M.E. research in 2019
If you would like to support our Christmas Appeal, then please:
- Donate online via our JustGiving page or to start fundraising,
- Donate by phone using a card to head office (01280 818964).
- Donate by cheque payable to The ME Association (with a note saying that it is for the Christmas Appeal) to ME Association, 7 Apollo Office Court, Radclive Road, Gawcott, Buckinghamshire, MK18 4DF.
If you have any questions about the Appeal, then please contact our fundraising manager, Helen Hyland. Thank you.