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Epilepsy is invisible (most of the time) and fluctuating (all of the time).  It is also a complex condition with many different types of seizures. It is very difficult for someone who may be unconscious to explain how being unconscious affects them.  It is difficult to get any award without having to go to a tribunal.  Many people with epilepsy are isolated and have missed out on educational opportunities and are ill equipped to engage with the system or to self advocate.  There is very little help available so in many cases they give up before even requesting MR.  Many people with epilepsy live in poverty as a result.  It is the condition with the biggest disability employment gap so earning a living when and if you are well enough is also extremely difficult.

I suffer myself from Fibromialja, and every time I apply I get rejected, which on a good day I can whilst moving about I appear fine, despite always being in pain, and dropping things, and struggling with dexterity issues. 

My partner has a very rare condition Pulmonary arterial hypertension. It affects both the lungs and heart, and is degenerative and progressive with risk of sudden collapse/blackout/death at any time. He cannot work and the consultant told me he should be supervised 24/7 in case of black out so I cannot work now. He is under specialist care from Royal Papworth hospital in Cambridge. Following his confirmed diagnosis, and with the help of the Pulmonary Hypertension Association, the consultants letters and a friend who's a retired GP (and actually had some knowledge of this disease, and did research to find out as much as possible) we managed to complete the PIP form and undergo a 45 min phone assessment (with our retired GP friend present and contributing) resulting in PIP awarded as Enhanced for Mobility but Standard for Daily Living at first attempt. My partner was very breathless through the effort of simply talking, which was pointed out during the assessment and we asked for the questions to be a steady stream with time to answer and recover from the effort. Emphasis was placed also on how his mental health is affected ie depression and anger making him socially inept and very irritable and rude to people. We also stressed that if I wasn't around he would not eat or drink or get washed and dressed due to the depression. He used a shower seat but after the slightest exertion he needed to just sit and rest to recover his breathing. We were astounded as we fully expected to have to appeal a rejection. I do think that the result is heavily reliant upon both the information you give yourself (or have agreed that someone else can be present to assist), having a copy of the completed claim form in front of you to refer to and the attitude of the individual assessor on the day. The assessor probably has to work to department statistics to ensure that X number of claims are rejected ( or am I just a cynic?) PIP was awarded for 3 years and the renewal is due in November this year. We will be prepared for a fight and will be pushing for enhanced rate for both aspects of PIP as he is physically worse than 3 years ago. I kept a photocopy of the original claim form and the notes that I made during the phone assessment and will use those, along with the info/advice from this site, to deal with the renewal.

My husband has Ankolosing Spondylitis and has little movement in his neck.

Osteoporosis 

I had a benefits check, I told them I had high rate mobility award , they said no you haven’t, I said what’s dla going in my bank every month, the lady phoned dla and they said award stopped in 2019, year I became a pensioner, it’s still going in and I have ordered a mobility vehicle 6 months ago🤔

I haven't been out for 3 years due to anxiety. I have depression. I have stress incontinence and I also have fibromyalgia which is quite debilitating. I've been refused pip twice. They tell me I can walk 200 yards and plan a journey, even though I can't get out of my house without almost passing out with my anxiety. Also I spend a lot of time in bed as I can't move around as I should be when my episodes are bad. I live alone and 30 miles from family.  I got Zero points. Hope this helps your survey. 

Zero points for chronic BAM (Bile Acid Malabsorption) which is a condition of the bowel and can make it very difficult to go out without soiling one self as the urge is very sudden. No one that I have had for an assessment has known what the condition is and have been given zero points for soiling several times everyday and prevents alot of people from leaving the house. Very frustrating 

Cannot claim pip for Crohn’s disease!! They totally disregard this disabling condition 

The condition ME/CFS is very hard to get DLA/PIP for as it is a disabling, fluctuating condition and it is a hidden disability.  It doesn't fit the tick box format.

I have narcolepsy and cataplexy. It's neurological and we are missing brain cells. But it's often just that sleep thing so it's not as easy to get PIP. A small amount of people have got through as neurological. It's the luck of the draw really.

Dissociative Identity Disorder. It used to be almost automatic that you were awarded DLA for life, and that's what they gave me. With PIP they won't give me any points at all. I do get points for my physical problems but nothing for my mental health.

Fibromyalgia is a hard one to claim for as it is quite a complex condition with no definitive diagnosis. If you dare to say you have good days, you are doomed to failure.

EHLERS Danlos syndrome (inherited connective tissue disorder from faulty gene/s) and Postural orthostatic tachycardia syndrome - even most GP’s have never heard of either of this life impacting, whole body affecting rare conditions. A nightmare to pigeon hole the ‘ impact’ on every day life’ as every autonomic and physical body function is affected by faulty collagen. Our three kids were lucky enough to have been identified with these conditions By Kings College hospital consultants, but was still an absolute nightmare to go through the DLA, and then PIP process as the assessors didn’t even have these rare conditions on a medical database! Horrendous process, with many reassessments despite being genetic - and despite over 200 medical reports :( 

I think the less obvious (clinically speaking) mental health conditions are the hardest to claim for. There aren't any x-rays or MRI scans to provide rock solid evidence of depression (for example) and it's particularly hard to prove how it affects your daily life. I said I barely eat, sometimes once a day, sometimes not at all, and in the assessment report they gave me zero points for that category because I was apparently had no problems with eating. Was pretty shocked when I saw it. Thankfully, I did have all the hard evidence they love for my physical disabilities so got enough points in other categories for an award. However, if I'd only been claiming based on my depression, anxiety and OCD, I doubt I would have got my claim approved.

I have read the list on the member's site and what I find most amazing is the scarcity of conditions being awarded at 100% when it must be blatantly obvious from the conditions listed in the 90%+ section of the list (and many other sections too) that people need a maximum award. I cannot see the point in drilling any further down into this data because in reality many people have multiple conditions and two people with the same condition might not necessarily have the same experiences of symptoms/effects. The whole thing needs to be looked at from a different perspective and I doubt if this government is actually capable of that, much less willing to consider it. The very notion that people with long term illnesses and disabilities have to prove the impact of their condition is demeaning and ludicrous. And yes I have been through this process multiple times for myself and my partner and I wouldn't have got the awards I have without the help of this wonderful site.

Can't help but notice that a lot of conditions which either exclusively or predominantly affect women are not taken seriously or their affects are underestimated. These include fibromyalgia and endometriosis often associated with  POTS. Women are often subjected to gaslighting and it is often suggested that their pain is all in their mind. If attitudes propagated in the training of doctors about such conditions are not challenged it is hardly surprising that DWP decision makers who have no medical expertise at all come to make bad decisions.

I have severe ME, spend most of my life in bed, would have adverse consequences from walking, standing or even sitting up too long.
But I wouldn't have got the award of standard rate on both counts if I didn't conveniently also have bad arthritis in my hip - a minor problem for me, since I'm too ill to walk much anyway. But the fact that my hip doesn't flex outwards so I can't wash between my toes, struggle to put a sock on etc, that's where I gained my points.
Musculoskeletal conditions definitely score higher. If I had the hip replacement I've been offered I'd lose my PIP, and probably my Blue Badge too. But I still wouldn't be able to get out of bed.
I do see that ME is hard for them to gauge - before this relapse I had only mild ME and was working, swimming, having a life.  And now not. But there's no objective evidence I'm this ill now, they just have to take it on trust from me. And I'm sure there are people who are tempted to exaggerate to get more money, I'm just not one of them.

I have idiopathic pulmonary fibrosis chronic back and knee pain autism spectrum disorder mental health and ibs what would happen to me

Severn dvts claudication not got a thing pip or esa