EDMESH

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Is M.E a registered disability?

I feel I am being treated unfairly with the bursary office in my college. They are not accepting my conditions as a reason for being off. Or giving me certain accesses to lifts etc. As I would need to have a blue badge.

I handed in the forms in September and currently all my info apparently has been sitting on someone's desk for the last two weeks. I want to complain but feel it would only make things worse. Finding it difficult as it is never mind the stress of money worries! It's affected my health. I wondered if I could apply for a blue badge as proof?

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Of course M.E. is a recognised disability. Having said that it is often misunderstood and a burser may well not understand. Have you submitted medical info with your application? That should help if you have medical staff agreeing with your requests.

Not sure if you are a student or staff. But speak to tutor or manager to gain their support and assistance.

Hope you get it sorted soon

Ps obtaining a blue badge can be VERY difficult unless you are on high rate mobility.

Sorry I'm just recently diagnosed a week ago still finding out all the info. Apologies if me asking that caused any offence.

I'm a student, I did pay for a doctors letter it didn't have a great deal of detail it only listed conditions. The way they see it is if you don't have a blue badge it doesn't enable you access to adapted toilets and lifts. It is infuriating! I may see if my doctor can back me up though I had got the letter from another doctor as he was the last person I'd seen wig an emergency appointment.

It can be difficult to get some people to understand I did submit my own letter of support I thought I would try to explain it to them . so fingers crossed that helps.

Thanks for your reply

Firstly you should be a member of the student union, if not join it. You will need their support.

Secondly You are disabled under the Equality Act 2010 if you have a physical or mental impairment that has a 'substantial' and 'long-term' negative effect on your ability to do normal daily activities.

Thirdly whilst you may not be eligible for a Blue Badge your local Adult Social Services Dept may be able to help you get 'registered' as a disbled person and that has advantages. (Yippee look it's official I am sick!)

Good luck at Uni, stick with it and built a support network. You may want to look into getting a programme like Dragonspeak to help you when you feel too tired to type and see if the Student Union can offer library Buddies or if they know of a group that does. Make EVERYONE aware you have ME. That way no lecturer, invigilator, member of the Bursary can say "well you didn't let anyone know you are ill",

If you are a student you ought to register as a student with a disability and get support from the Student Support department. For example, a young man who has M.E. regularly sees the Student Support at his Uni. They provide him with an assessment of his support needs and ordered a computer and printer so that he can do his work at home. This included any adaptations that he needs. He was also offered the services of a person to assist him to plan his study. The course was full-time but he found it too hard to get to Uni regularly so they arranged his course so that he could attend one day a week and extend the course over 5 years. When he was worse and unable to get his course work in on time he was able to apply for extenuating circumstances so that his work could be handed in much later (at the end of the summer rather than at the end of the term). Now he has had to apply for a year's suspension of his course as he was too ill to continue. He will continue when he feels able to do so, picking up from when he left off. He was getting DLA at a medium rate but has transferred to PIP and has now received it at the higher rate for Care and for Mobility. You ought to be receiving DLA and now probably changing over to PIP. If you have not applied for it, why have you not? Is it because a) you do not consider M.E. sufficient reason to apply b) think it is too difficult to apply c) have no-one to assist you to apply d) have applied but were turned down the first time? It is quite common to be turned down at the first application but you need to have support from someone who understands M.E. to assist you to fill in the form so that you state the problems that you face daily in a correct manner. You probably take it for granted that you are exhausted much of the time and cannot sleep, or wake unrefreshed, or are too weak to get out of bed some days, or regularly are confined to bed for a day or days so your condition has become 'normal' for you. If you are employed rather than a student then go to your GP and ask for them to write a letter for you to your employer stating that you have an ongoing health need and require some support to work effectively, for example some flexibility. The GP 'might' be supportive! Who knows! Otherwise, fill in the form for a Blue Badge and ask you GP to sign it for you. Tell him/her that you need it so that you can park near your work so that you don't loose your job and to enabale you to get your food shop without using up too much energy, thus keeping sufficient energy to get to work. If you need other support, contact one of the M.E. Groups who have a Support Person who you can speak to and who might be able to liaise with your employer. You could contact me directly too if you need extra help as I'm Political Liaison Officer for a local M.E. Group.

I've just read your post & sorry to jump in..when it's about someone else..it's just that l really need some advice & you appear to be quite knowledgeable! Little over a year ago, l was subjected to an Atos medical. You may have even seen some of my posts about it. The outcome was awful & my benefits were taken away. At the time l barely could get off my bed to use the bathroom & yet I'd been deemed fit for work. It took so so much & l will not bore you with the details of just what it took..to get my benefits reinstated. That said, to my sheer horror, I've just been sent another letter from the so- called Health Advisory Service..calling me in for yet another medical. From past experience, once you attend an appointment, you've lost points. If you hear your name called..ditto. If you raise from the seat in the waiting area..same thing..so on & so forth. My report , which l requested a copy of..was 14/16 pages long..with one page mysteriously missing. From start to finish..was either totally out of context or out & out lies!! The thought of going through this farce again & knowing what the outcome is very likely to be..absolutely mortifies me. My newly allocated Social worker has spoken with my GP & requested that he sends a fax to these ppl, supporting my case & asking for a home visit. He has been ..as always..totally unco- operative & stated that as I'd recently attended a Colonoscopy appointment, he sees no reason why l cannot attend this medical. Not to be deterred, my Social worker went on ..by sending him an email in a last ditched effort..explaining how detrimental to my health this would be, especially if it resulted in my benefits being withdrawn again. The response was a very curt one line email, via the doctors wife,(who is the practice manager), stating that.." You have already spoken to the doctor on this matter & he has given his answer". I feel like I'm being pushed over the edge.. & just don't know who else..' If anyone' can help me? If you have any information that might assist me, I'd be eternally grateful. Jan Lee

Hello Jan. Very sorry to hear that all this is going on for you. It sounds horrendous. When is this assessment due to happen? Where do you live? I'm in Wales. Would you be able to email me? miriam_melody2000@yahoo.com. If not you could message me on here. I will leave you a message to see if we can get in touch that way. Let me know as soon as you read this and we can talk more.

Miriam

Thanks for responding. I am in London..well Essex. It was supposed to be on the 4th of April, but since my Social worker rang them to ask for the home visit...they have changed it to the 18th April...pending!! That was if my doctor would do the necessary, but as l explained, he isn't going to help me. I'm a bundle of nerves...just thinking about it & l desperately need to change my GP. He doesn't even believe in the condition of M.E. He's been about as useful as a chocolate teapot & l don't think l can take much more. Sorry to be such a nuisance. Jan Lee

You are not a nuisance. I have sent you a message to your box on here. Can you find it? Miriam

My email address is bluebird.jl23@googlemail .com

Thank you, I didn't know it was registered under that act great information to know.

I should speak more to my lecturers about it I feel I haven't because of worry of their reactions especially when you never know people's response to your illness some have uninformed opinion already just gets my back up.

The problem at this particular uni is they have no support staff or department they have one woman for the whole campus. Spreads her very thinly luckily I did see her at the start of my course and she did a needs assessment and now that I have signed it she can talk with the team leader of the bursary department and sort it. After receiving my letter of support and possibly the fact my mum rang up and gave them an earful they will release a partial payment.

Thanks again for the information I didn't know you could be registered as disabled by your local adult social services. Will be on my to do list

I've just read all of that sound info you've given to the newly diagnosed student. I myself am having untold problems right now & have had my income support stopped after An Atos medical. I'm currently having an awful relapse & approaching my 4th week in isolation in NY own tip of a bedroom. I've only just managed to get my GP out to see me. I think he was shocked to see, not only my condition, but the state of my surroundings. Thankfully he's now agreed to write a letter which I will have to send to Atos for them to do...a Manditory re- consideration. Now I'm worrying its all taken so long. .& I'm running out of time. The decision report took over a wk to arrive, its taken almost two more to get a GP's letter of which I still won't have until pm tomorrow. The letter of report was dated 30th Sept & youve a month to ask them to look at your case again. Its already nearly 3wks gone now. I'm on my own & no one seems to want to help me. The doc said it could take ages for Social services to come & assess me & in the meantime, I've only had contact via emails from the Samaritans for comfort. I'm alread6 ge5ting in debt & the money that I do have, I can't get it from the post office account into my card account. So direct debits are failing & charges are increasing. I just can't get my head around what's happening to me. Help is all my head keeps screaming.

I'm sorry you are having such a hard time I do feel more could be done for people living with M.E

It is understandable you can't keep up with household chore the slightest bit of cleaning exhausts me as I used to be a chef I made dinner for everyone but exhaustion kicked in almost straight away and couldn't clean up or put out the dinner even microwave meals some days have me sitting on the floor exhausted my family don't always quite take to me not being able to tidy at times.

The citizens advice could be helpful I am not aware if they do home visits but maybe they would consider it if you asked. They applied for PIP over the phone with me present and were alot of help.

Yes you can get registered as disabled and get disability living allowance (DLA) from the government, depending on how long you have had the condition and so long as you have been diagnosed with ME by a specialist. You can check out the government website gov.uk/dla-disability-livin.... hope this is of help you may also be able to get an BLUE BADGE for help with parking if you get the higher rate of DLA.

Thank you that's a great help

Trying to actually get these things done is a nightmare. I have been motivated to take action though after a bus driver left me to walk home about a 2 mile walk today mostly up hill I'm In such pain now I definitely need to look into getting it recognised which I'm sure everyone struggles with. Need a nap lol

Yes of course they need to accept it! My friend registered as a disabled student through the Student Support at the college. It is they, not the bursar who needs to know. They are breaking the law if they don't make it easier for you to study. Let me know if you need help. I can call them for you.

I was at my wits end last week I thought I was back to square one. The team leader of the bursary office is fighting for me but the guy above her keeps cutting the amount. I don't think they have registered me as a disabled student but I am looking into doing that with a tymes trust card. The tymes trust writes to the college for you and specifies your needs.

I do see a woman at the support but I haven't been told to apply as a disabled student.

Chronic Fatigue Syndrome or ME is classed as a disability under the Equality Act 2010, as it can have a ‘substantial and long-term adverse effect on the ability of an employee to carry out normal day to day activities.’

Also see the Department of Work & Pensions website:

meassociation.org.uk/2007/0...

I hope that helps

Kind regards

I wish I had been a member of this site a long time ago. I have M.E and hypothyroidism and have been signed off work for more than six months with a flare up, exhaustion, depression and the pain that accompanies my conditions. I have had a hard time at work, no exceptions have been auctioned because of my condition. Recommendations have been made by Occupational Health advisor, but it is advisory and not compulsory apparently. My doctor says that everything has been tried treatment wise and I just have to go with it. I have come to the conclusion that my job may be too tough for me to cope with on 30 hours a week, but as a single person I have to do the 30 hours to get working tax credit. Because I am ill I have lost that and am now on ESA of £148.?? Per fortnight. It is so hard to run a home on this amount of money when healthy food costs more than cheap filling carbs that don't help my condition. If there is any advice and knowledge available I would be so grateful. Thank you for patiently reading my post.

It is tough on ESA they left me on the basic amount and didn't assess me nor put me to the work group. If you haven't had an assessment or anything that could be what has happened your money doubles once you have been assessed or attend the activity meeting. If you haven't done so already you should apply for PIP.

It is difficult to eat healthy on a budget so I take supplements when I can afford them they last month's.

Thank you, I didn't realise that there was still an assessment to be arranged.

I'm still employed, but no longer entitled to stat sick pay.

It's not easy, any of it, and when I see colleagues they shun me as if I can turn it on like a tap?

Why would anyone wish to endure the illness, let alone manage to look after themselves and do the budgeting and all that needs doing.

Sometimes I don't have enough energy to get up, so I rest for a day, until I feel well enough to get up and try again.

There are plenty worse off, and plenty more who are fit and able!

Maybe that could be me........one day!

Yeah I think you can contact them or your local job centre or citizens advice could help. It is hard to find people who understand. But makes us appreciate the ones that do. I find it hard to waken up at the moment too think I've just over exerted myself though I had such pain in my shoulders this morning and couldn't lift my head from the pain in my neck. My college are not particularly understanding either they feel they are not obliged to pay me so I have to get a sick line for every day I'm off which is a unrealistic when I've needed at least one day off per week as I need to rest for at least 4days in a row to be fit. I need a days rest after doing anything too. I've only been off for one full week in the last 5months but that is still not good enough for them.

I just appreciate the people that do understand more so and think of the ones worse off as you do

You ought to apply for PIP and you will need help to fill it in. This is because a person who is ill tends not to look at themselves correctly. They underestimate the impact that the illness is having on them. If they feel a little better one day they push themselves to do more than they are able to do and overestimate their capacity. Therefore on the form they can easily talk their way out of getting the Benefit. Whereabouts do you live? I'm in South Wales and could help you if we were anywhere near each other. Or can help you over the phone or email.

Thank you Stephenk that was helpful

Thank you x

Thank

Is M.E a registered disability?

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