Has anyone in the UK who suffers with PBC, ... - PBC Foundation
Has anyone in the UK who suffers with PBC, successfully applied for a Blue Badge? I am pretty upset as I have just been rejected.
I have a blue badge - but I have inflammatory arthritis as well as pbc, so during a flare up I have major mobility issues (outside the pbc fatigue) - it's a little easier for the powers that be to understand than pbc.
Thanks Val02 for your reply - I can understand that your arthritis would seriously affect your mobility. Perhaps I should have mentioned in my application that I badly broke my ankle last year. Although I had a plate inserted, to hold the bones together, my walking ability hasn't returned to normal. I get excruciating pain at the base of my spine and limp if I have been on my feet too long. This coupled with my PBC, severely restricts my mobility and I was really upset to be turned down for my blue badge. However, I do understand that a serious accompanying debilitating condition would result in a successful application.
Hello ,I have a blue badge,but i also have ostio arthritis,I've had my badge for 4years as the ostio,s bad in my legs but it was a two year process to get it,i have raynards,p b c ,and gastritis , I think they work on how debilitating your disabilities ,are.you should try again this time with supporting letter from your gp and ask your specialist if he will write you one as well.like i said it took me two years and a lot of hassle,but I got it in the end .so I know how stressful it can be,I wish you good luck ,try again ,this time put your other disabilities as well.
I have had a blue badge for years i was also turned down only people In wheel chairs and severe walking problems will get the badge they are not interested as long as you can walk.
I have had a blue badge for years. I cited the fatigue aspect of PBC showing evidence with the PBC leaflet etc. You have to be honest with, I told them I was better in the mornings so never used it but used it in the afternoons and evenings when I was too tired to get out much. It was having an impact on my quality of life. I think you try again and tell them about your ankle for sure, supporting letters do go down well. Good luck, you deserve to have a Blue badge
I believe that you are assessed on how far you can walk unaided and should give 'worse case scenario' answers. One relative managed to get one despite being able to walk quite easily most of he time because he told them how he was on his 'bad' days. Judging by different family members and friends success or otherwise in getting a blue badge, it would appear to be a bit of a postcode lottery as to whether or not you are granted one. It might be a national scheme but the criteria is not consistent across the country. Good luck with your application.
I cannot see why you would need a blue badge due to PBC alone. Blue badges are issued to people with severe walking problems due to various illness's that affect walking. In my area you can get assessed and maybe you could where you live. It is not given out for tiredness because if someone is so tired to walk they would not want to drive anywhere anyway. If you still feel you do qualify appeal the decision. I delayed my badge for 4 years as I did want to be labeled disabled but in the end had no choice. Mine was issued within 3 days.
The reason my wife is applying for a blue badge is to enable her to continue to perform some of the more basic activities in life when she is at a low point in the illness. On a bad day, the difference between knowing that she can park close to the supermarket entrance or not knowing if she will be walking from halfway down the car park is enough to prevent her from even considering going out. We have similar issues when trying to plan trips out; the walk from a car park to an attraction often means we can’t even consider a visit unless she is on one of the best days in the cycle of her illness. Being able to get her to the entrance rather than walk from the car park could mean that we could do more and start to reclaim something of a more normal life.
She doesn't want to be classed as disabled but has already had to give up work due to the fatigue she suffers during the low points.
She was very upset by your unsupportive post and I am at a loss to understand what benefit you thought you were providing in your response. Quite frankly if you are not going to post a supportive comment I’d suggest that you don’t comment at all in future.
Because PBC alone can cause severe exhaustion and fatigue, also bone pain, and if you are told to not give up walking, it is better to have a Blue Badge and park in a more accessible place if you have to go somewhere. I have to do this, and have found that if I overdo my walk for some reason, or get delayed, then there is a danger I may not be able to return to the car without assistance. So it can cause severe problems in some people. Sometimes when you live alone, you have no choice but to get on with life. I did return to work after 2-years of sick leave, and to a ground floor, no stairs, with disabled parking place at the front door, and a new position in the same company to accommodate my problems. Sadly, I eventually was medically retired, but I still have a life to live, and do my best.
Hi Soozey as someone else said on here appeal the decision and do write about how you are on your worst days. We all have good and bad days with PBC and the fatigue and joint pains can make everyay life very difficult for a lot o people, so anything that can help with improving our quality of life such as a blue badge should be fought for. Best of luck take care. x
Thanks littlemo and everyone else for your support. I will definitely ask my hepatologist and GP for letters to support my application. Only my specialist and husband seem to understand this disease... Even my GP seems to think that my horrendous joint pains are triggered by my brain and is not terribly sympathetic. And of course, people think I look really well! It helps enormously when fellow sufferers seem to go through the same things as I do! On good days, I think I must be turning into a hypochondriac and am wildly exaggerating my condition...then a bad day comes and I know I'm not!!
My son was turned down as well, he had a significant head injury from a motor cycle accident 31 years ago and was in a coma for 12 weeks he walks badly stumbling, tripping and falling due to dragging one foot, he walks like a drunken man - when I queried why he was turned down they offered an assessment by a professional and occupational therapist but when the phone call came they said he wasn't entitled he is not over 70 and not on a higher level of disability allowance also he can walk tho beit not well! Apparently the badge entitlement is given by the DVLA - I replied, so the fact he stumbles trips and falls is not your business and their reply "I didn't say that"
I can reapply and will but when I offered a Drs letter I was told that would not help. I know of other family members that in my view are no worse than my son and they have blue badges, also have a friend that has one and I get really annoyed and upset with the fact they don't want to assess him in person.
Pluckyfilly
Hi pluckyfilly...I was really appalled and disgusted when I read that your son had been turned down, despite his significant walking problems. Sometimes, it seems that some bureaucrats go out of their way to deny people something that would help their quality of life and reduce stress somewhat! Ignore what they say about a supporting letter not helping. I intend to ask both my GP and specialist to write letters on my behalf. Also, there is a discretionary category, in which your son should be included... Just because he is not 70 and not in receipt of a higher level of disability allowance, should not mean automatic refusal!
I think that when you're turned down for a blue badge, they hope you will just meekly accept this and go away! I intend to appeal, although this is stressful in itself! Keep trying and I wish you success!
Always get your Consultant and GP to support your applications with letters, plus provide them with a summarisation of the condition as well as your own written report about how it specifically affects you. I've never been refused am under 60.
I took early retirement due to ill health last September, this was mainly due to the fatigue of PBC and the stress of not being able to move too far from the loo in the mornings. My whole world has been turned upside down and last winter seemed to go on for an eternity. I hardly go out as I just don't have the energy and if I do venture somewhere, I get there and want to come home again. I guess a blue badge would make such a difference as parking in main car parks etc puts me off especially if there is a considerable walk to the shops. I have been caught out a few times and had to be collected by my husband when I have got carried away by the sunshine and taken the longer route when walking the dog. Only a fellow PBC sufferer would truly understand this, the fact of looking well throws a spanner in the works for sure.... that is why I was a little surprised by K219's response which I felt was totally unsupportive.
Hi Tink, thanks for your response and sorry to hear the difficult experiences you've been having with PBC. It certainly alters your life and is not made easier by lack of sympathy or care. The fatigue has a huge impact and although I am only 58, my 85 year old neighbour seems to have more stamina than me...needless to say, she was recently given her blue badge! I suppose the thing to do is to make the most of our good days and to keep cheerful. Sharing our thoughts and feelings on here, is so helpful and you don't feel in such a vacuum!
