Well I was very much hoping to be able to come on here and say how well it went and that people shouldn't be put off by it but unfortunately that was an absolutely hideous experience.
First of all the tribunal was in a shopping centre with really challenging lighting for me. They couldn't find me a room that stopped light enough to stop my face reacting but it didn't seem to help when I kept pointing this out to them. From the outset the judge was very confrontational with me over the mobility question and there was no gently easing me in - he asked why I didn't think that I could walk 20 metres when I'd already done it and proved I could based on where I'd parked and I must be able to do it repeatedly as I was going to do it again to get back to the car. I kept stressing that I had no choice and that I would be taking the next 2 days off work to recover and that I had had to use my inhaler while in the waiting room and that my hips and ankles were killing me.
They asked me a lot about how long the joint reaction took to come up and how quickly it went and I hadn't really thought it through to be able to give a clear answer as it's totally variable - sometimes it comes up immediately and sometimes it's the following day so I have to still limit the time outside to avoid the stronger reaction.
I was asked how I manage to be seen at Guys when it's quite a walk around London Bridge station and the hospital and definitely more than 20 metres. I kept stressing that I had never claimed not to be able to do it at all but that I can't do it every day and that I can't do it repeatedly. Their understanding of repeatedly seemed to be very different to mine. I also kept pointing out that I was in pain having done it already and that I am left in severe pain when I go up to Guys but it's once every 4 months and I don't have a choice. I also stressed that my prescription has to be couriered to me as I'm unable to cope with it after I've had an appointment there.
The doctor lady asked me whether it was a question of mobility or of the lights. If I were to try walking at night with just the odd street light here and there would I be able to walk further than 20 metres to which I could only reply I honestly don't know because it's not something I do!
On the daily living it was questions from the disability lady about what I can and can't cut up and can I use my left hand instead as my left hand gets used for most other things I was doing and had good general mobility in my arms - I had to be honest and say I don't know because I've never tried. I will be trying before my next assessment so I can answer though! She asked if I take the cutlery out with me and I said no but unfortunately by that point I was so under attack and flustered that I didn't think to say it's because I don't eat out because I'm too exhausted.
I must admit I totally folded and lost my ability to stay detached. The judge himself kept interrupting and looking at the clock but they had read all of the information I'd put in in advance so I can't say they didn't consider everything but it's a process I never want to go through again - I left feeling like I was a fraud.
For me it's not a disaster as I am on standard rate for both elements and although I've lost my appeal to be put to higher rate on both I'm at least still getting help. Interestingly they did increase my mobility from 8 points to 10 as they felt I DO need an aid or appliance to walk 20-50 metres and the dwp had claimed I didn't - I don't think it actually helps at all though.
The judge did specifically advise me to take legal advice with regard to the mobility question and to look into the reasoning and see if it could be challenged legally. Basically as my mobility is affected by the photosensitivity rather than a physical mobility problem I don't fit the tick boxes or current criteria and he feels there could be a very strong legal question as to how that should be applied in my case. I will ask for the statement of reason with regard to mobility and go from there but I really can't afford to be taking legal advice and I'm not sure I can go through all of that again but I will discuss it with the CAB to see what they advise. Plus I will look into if they think it is worth me reapplying on that side on the basis that the reaction is now stronger.
I really wish I could report differently and I hope that I was unlucky in the hearing I had but other than the judge keep interrupting and looking at the clock I would have to say that they did look at my case fully it just felt very much like i just spent an hour in an argument having to prove I wasn't being unreasonable and came out feeling like I failed miserably. I wish everyone else luck.
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Mifford
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Oh, hugs to you xxxx I know it's hard to think about right now, but if they raised a legal point about the standard criteria, that is an interesting avenue ( though my immediate reaction is that DWP should be sorting that out, not you) . As for asking if your mobility might be better if you walk on dark streets, I'm gobsmacked! Has that been recorded? Dreadful.
Urrgh, sounds like they put you through it alright. You deserve a good rest now - you did your best under very difficult circumstances, and at least showed them that you wouldn't just lie down and get squashed. Well done! x
So this evening the power then went off at 7pm just as we were cooking dinner after I hadn't eaten all day - I went out for takeaway!. 10pm all the neighbours came back on except us. Power network are sending an engineer which could take up to 4 hours ... at which point I took one look at my fiancé and burst in to tears (most unlike me). He has sent me to bed to get some rest and he's staying up for the engineer bless him.
I must admit I wasn't expecting anything out of the appeal and thought I might be disappointed or angry but I didn't expect to feel so totally dejected. I just couldn't think straight at all and totally failed in explaining how much pain I get and the fatigue etc - the mobility I get the level of photosensitivity etc I have is incredibly rare and it's an unusual situation but I didn't expect things like the fact I have to get to a specialist hospital that I have no control over to go against me. I wished I'd asked her to suggest a solution because it leaves me totally drained and in severe pain afterwards and for days after - but again I was just so stunned by the question I didn't add about the after effects.
On the bright side (groan) I can now answer what happens in the dark - no I don't become a galloping gazelle but I do walk into things more! Just ironic I find out tonight when it's too late and not beforehand!
I would also like to know how they expect you to get to hospital visits in the future if they question your ability .Maybe you could go in the dark? Due consultants make house calls now? I go to London Bridge, I leave an extra hour so I can stop an sit if necessary as I cant breath due to anaemia and arthritis pain.
Me too - I always get there an hour early so I can take my time and rest when I'm there. I did tell them I have to cover up more, take extra anti histamines and that I struggle immensely with it and my joints flare badly by the time I leave which means my prescription now has to be couriered to me as I can't carry it by then as I'm so bad. I also pointed out I've only had to do it a couple of times so far. Getting there early is one of those things I don't think to bring up until someone says about it because I just automatically do it without thinking. I was undiagnosed for so long while quite ill that I have adapted without even realising I do so I don't even think about these things as they are so ingrained now.
I think their point was more that I can do it for hospital visits so that shows that I can do it. My point is that I don't have a choice so I grit my teeth and get on with it despite the pain and discomfort - that isn't the same thing as being able.
Just thought I'd add a little post script to balance things out a bit as I don't want to destroy anybody else from hope going through this process - I don't think the dejected is just because of the tribunal. It felt pretty brutal but I think it's more a culmination of things for me that made it feel more like that. I've been battling to get my sunscreen prescription sorted and got nowhere with that and recently had a bit of a battle with the football club I support where I have to move seats next season where they've left me up in the air as to how it will work. It's now literally the only thing I do to get out of the house and as hard as I find it the thought of giving up going had been getting to me - it won't come to that as we'll work it out somehow . I think everything I've been trying to convince myself I'm coping with just all rolled up into one today and the fight just got knocked out of me. I seem to be constantly battling at the moment to just get a little bit of help to stop life being so much harder than it needs to be and getting knocked back from all sides. I usually keep going pretty well but for some reason today I just reached my limit.
Sorry to kind of let all that out here - being able to offload it somewhere does really help though and I know it'll be read by people who simply get it which means so much I can't even tell you.
I don't know about the technicalities of how those things are assessed but it seems unbelievable that they questioned how you could walk round the hospital for your regular appointments and suggested you go out walking in the dark!!!! Bizarre!!!
I think you may have been just unlucky on the day with the team you got.
I would definitely contact your citizens advice and explain what happened.
You could also write to your MP. It is utterly abhorrent that you should have been interrogated like that.
It sounds awful Mifford - the very reason that some, myself included, couldn't face applying for PIP to be honest. One of my two profoundly deaf sisters and her fiancé both get PIP. There's nothing variable about their deafness and they are well versed in the application and interview process and have a BSL interpreter with them so I think this really helps.
My sister was on at me to apply because of my proprioception problems affecting my balance so I often need a stick. But as I can walk the dogs in open spaces where there aren't any moving objects or lighting changes I can't see that I'd remotely qualify. Your story convinces me (for me) and I will explain this to my sisters. They don't understand the fatigue at all because I've always had it but it's just much worse. But then I've always had autoimmunity and this is a difficult concept for people with a consistent disability to grasp about their big sister too. One of my sisters has a best friend who has advanced MS so she gets it more.
But surely in your case the extreme photosensitivity (which I have discovered I have too bit to a far lesser extent) is part and parcel of your Lupus and should absolutely count as a reason why it's so hazardous for you to live with and impacts on your mobility and independence? Why isn't there allowance for a rare, but established conditions which are unpredictable?
They seem to be assessing you on a bogus set of criteria? Baffled and most sympathetic to the dejected feeling you now have. Invisibility and variability make our diseases such a nightmare when assessments become trials and our autoimmunity counts against us further. If only these people who sit in judgement had to live with the diseases themselves prior to becoming assessors or would be such a different story. Xx
And then some - the day to day difficulties don't really fit into something easily explained most of the time whereas if I could find a way of putting them into my body for a week they'd get it! Some days it's fatigue that stops me. Sometimes it's because for that 5 minute period my lupus has decided to attach the knuckles of my hand - I offered to show them pics I've taken on my phone because it's so much easier to SHOW someone than explain it but they didn't want to see. Sometimes it's because I've got caught in an unplanned situation such as having to walk further from the car park than I knew I'd need to and with really bright lights that if I'd known about I would have requested a different assessment centre and waited longer for. And yes I'm claiming I can't do that even though I just did but it hurts like hell and because I'm so used to being in pain you won't see that because it's now my "normal" and I barely even mention it because I've spent 20 years being told there's nothing wrong with me and looked at as if I'm being a hypochondriac that I hide it as an automatic reaction. How do I do it? Because sometimes you just have to as a one off safe on the knowledge you won't be doing it again tomorrow.
The trouble is the mobility isn't about how I can walk outside it's how much mobility i have overall. And I guess they are right to some degree - today I walked more than 20 metres again. BUT I was in severe pain while doing it and the rest of the day is spent resting on the sofa in front of the tv moving a few metres to the kitchen and back only. And yes I am mobile around my own house and don't use my crutches inside sometimes but it's because I don't walk 20 metres indoors anywhere and my windows have filters that greatly minimise the problem . And being only able to do so in my own house and nowhere else or in the dark can't possibly be seen as reasonable. But unfortunately none of that came into my head until after I was on my way back home when it's too late to say it.
I will ask for the statement of reason though to see whether they have taken safety and reasonably into account along with acceptable speed etc and go from there. I also need to look carefully at the wording of the requirements as I know it states it to be assessed with things like kerbs you would experience outside in mind and if it's outdoors conditions that has to include daylight I would imagine. They certainly gave me the impression they were borderline on the decision and once I know how strong an argument I could make I will decide what to do from there.
Perhaps you could appeal and then, at the next assessment you'd have all your answers worked out? Not sure you could face that really though? Horrible dilemma.
Surely there should be criteria that applies to each individual disease at least - not generic ones as yoyr experoence suggests? No one case of Lupus is exactly the same so why should the criteria be set in stone? And where does plain old common sense come into the equation?😡
I can walk a long way thankfully, but, like most people with our diseases, the price afterwards is always high.
I asked my MP to come to mine, she declined, strange that. She past my letter to the house of Commons. The letter back was back how the system was changing for us long term sick but would take a while. I think the aim is to reduce as much as possible in the meantime.
Gosh it sounds awful, Not looking forward to mine at all now. Get in touch with your MP I have and he is writing a letter to go with my appeal forms, but said he would do whatever he could to help so well worth a try.
I would say don't let my experience put you off but be very well prepared - I don't know why but I had in my head that I would be arguing against the dwp case and shooting down their points but that isn't really what happened. I was asked questions like how long once my joints flare on mobility does it take for them to go down and because it's so variable I've honestly not paid much attention to how long it takes and how long outside before the flare happens - I must have sounded like an idiot when I told her I can't answer because sometimes it's instant and sometimes its the next day. It sounds strange but I genuinely couldn't answer some of the questions about what happens if I walk further or spend more time outside etc etc because it just doesn't happen any more because I know it causes me problems. Things like being asked how I cope with appointments at Guys as that's more than 20 metres walking I just looked at her blankly and said it's because I don't have a choice and it causes me pain but got fired another question that didn't give me time to think to add that that carries on for days afterwards as well. And the repeatability I kept telling them I wouldn't be able to walk that far again and repeat it and the response from the judge was but you can because you'll be walking back to the car which is repeating it. All I could keep saying was it's because I had no choice whereas today I've thought about all the answers I should have given. Unfortunately I just went totally blank.
If you're prepared for it then it won't put you off your stride and the areas that you are disputing think really hard about why you have problems with it and solutions they may ask you about - things like with cutlery can I use my left hand instead of my right. I doubt it to be honest but I've never tried and if I'd thought it out ahead of the hearing I certainly would have done to be able to answer it. Things like precisely what food can I cut up and what can't I. I was asked about why don't I use a microwave so answers that but it took me off the train I should have pulled it back to that it isn't the cooking that is the problem for me but the food preparation.
Good luck and hopefully you'll have a better panel than mine.
Hi Mifford, I really feel for you. I totally understand the deflated, exhausted, humiliating feeling these people leave you in. They definitely knock the stuffing out of you! My experience for pip tribunal was very similar. I broke down in mine & I think it's the fact that you know how your conditions affect your life & it's like their interrogating you under a bright spot light. Even all the evidence from your medical team is questioned. I'm really sorry you've been through this & hoping you'll win your case 💐
They quizzed me about my Dundee cream and whether I have to wear it under clothing and just outside or indoors as well. I explained that the reaction goes through my clothes, including jeans, and that I have to put it on all of me from the second I get up. She asked if that was my choice or did Guys tell me to do that ... I don't flipping choose to for crying out loud! Then they actually asked me if it was necessary. If it wasn't for me trying not to be confrontational what I wanted to reply was I don't know because I'm not a specialist in an incredibly rare condition but I have to trust that the experts know what they're doing and follow it. I simply said yes it is and I can't even sit in my living room without it despite the window filters.
All that said though I can't say they didn't let me explain it it was just simply that my head went totally blank under the pressure which is most unlike me!
As an update we have had power network here all morning digging up the front garden trying to find the fault. I had a blood test booked in so went to the doctors for that - my hands and wrists are still swollen from yesterday and I struggled to walk at all from the car today and was in loads of pain with my hips, parked in a disabled bay and then realised I'd left my blue badge in my other halfs car from where he drove yesterday so couldn't park so near, went into the surgery and they had put me into a room without the lights on except once they left me in there I realised the sun was shining through the skylight and I was reacting again so by the time I saw the nurse for my blood test I was on the verge of just bursting into tears on her. Talking to her while she was sorting the test out she asked me if I've considered a mobility scooter and I told her I don't want to lose my mobility any more but she looked at me and asked me how mobile do I feel now? I had in my head that it's a bit over the top and it'd look like I'm going overboard and she told me so what - I'm in pain and it'll stop me being in pain and if anyone else thinks it's over the top they aren't the ones having to deal with it.
Because I'm registered as a vulnerable individual with the power network people (I'd recommend every one to do that on health basis - I just had to get my energy company to add me to their list) they had already ordered a generator last night so by the time I got back home that had arrived and was working and I could finally get a cup of proper coffee and life seemed suddenly a bit better (amazing what coffee can do!) and I started giving it some thought. Reality is I'm assessed as my mobility being up to 50 metres even ignoring that it gets worse when I'm in daylight too long. If my other half is away I can't walk the dog or I put myself in pain trying to take him even a short distance because he needs walking. I'm limiting how much I can go out or what I do because of fatigue. Next week we go to the new forest and I won't be able to join my other half walking the dog on the on site walks because I'm limited how far I can walk without pain becoming too much. I no longer go to shops because I find it too much. The one time I do go out to the football it wipes me out and puts me in pain for days afterwards. I struggle with the hospital because it is too much for me. A fold up scooter that I can put in my car boot and only use when I want to would solve an awful lot of that and I could carry on as I am now with the same amount of walking I already do. Yes my rheumatologist, doctors and others might think it's not strictly necessary but does that really matter?
So this afternoon I'm starting to get my brain back to being more positive. So the appeal didn't go my way and I can't solve the issues that way so it'll cost me more but instead of giving up I need to find a solution. I felt totally flattened as if my independence had been removed yesterday but maybe I just need to look at it from a different angle and find a way of making sure that that doesn't happen. The heating has an electrical override that's working to stop me getting cold, I can cook dinner now, tea and coffee are readily available, I had so many offers of help from friends and one set of neighbours that it's made me realise I have more support than I realised - I just need to learn how to ask for and admit I need that help. Things could definitely be a lot worse.
I am once again distressed that anyone should go through this barrage of questioning. However, please look on the bright side, The judge did make a good point to us all that we a raised before, that the criteria is so narrow as to prevent people with conditions similar to ours being considered. It looks at pure cut and dried disability and there isn't such a thing. Maybe if enough of us raised the point of poor mobility due to fatigue due to phototsensativity they would have to accept it. They have also considered you need walking aids. They are at least seeing your deterioration which is noted for next time. Small steps I'm afraid. It is the inhuman approach that is unacceptable.
I did think the same with regard to them increasing the mobility points as it is now less of a jump to the next level when I get reassessed next time and leaves me slightly more confident that I won't have such a battle to keep my blue badge next time. They also added that "it is inappropriate to fix a term" but I have no idea whether that changes anything already in place - I assume I'll have a further response from the dwp adjusting the mobility points at some stage and see how that impacts the term of the award.
It's a very small victory on the mobility element but it is still a victory as it recognises that the report from the assessor was not accurate and that feels quite important to me for some reason.
So I decided I have nothing to lose by requesting the statement of reason for the tribunal decision so I've done that today and made another appointment with the CAB for 2 weeks time (away next week) to go over it with them. I can't see me being up to going through another tribunal in person but it could be that there is enough in the reason for me to appeal without needing to attend. Or it could be that we decide to put in for another assessment. Or do nothing. At least this way I have all of my options open.
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