No idea what to do next.

laura14282

Hi, thank you for reading this. I have been diagnosed with a very rare form of arthritis called Relapsing Polychondritis. I was working until the pain became too much and as it affects my ears, I was no longer able to wear the headsets necessary to my job. I was signed off work, receiving SSP and referred to a rheumatologist. When my diagnosis was made I started on Hydroxychloroquine Sulphate and told to come back in 6 months. Subsequent phonecalls to the rheumatologist have been met with irritation. I feel I have been left to deal with this with no information on my condition and no information on how to ease my symptoms. I have a very good GP who has prescribed Tramadol as a pain relief, however this has had little effect. I have also been advised by my GP to self refer to a podiatrist because most of my pain is in my feet and a physiotherapist to find out if there are any mobility aids that could help me. I am awaiting an appointment for both.

My SSP ended on the 4th Jan and as my employers are unconcerned and unwilling to try and help me return to work, I applied for ESA. This was turned down as I didn't make enough NI contributions due to being on SSP for 6 months. I haven't a clue about NI contributions! I cannot get income related ESA as my partner works full time. I applied for DLA and as I have no help, I filled the form in myself (incorrectly) and this has been turned down, I asked them to look at it again and they turned it down again. I have called Citizens Advice and was given the wrong advice and was made to feel like a complete nuicance. I called my council and asked to speak to a welfare rights officer, I was told several times that someone would call me back and 4 weeks later I still haven't had anyone call me. I am at my wits end and I have no idea what to do. We cannot survive on my partners wage alone. I have been asking my employer to visit me at home for 5 months now and each time get told they will arrange something but they never do. I cannot go back to work in my current condition but apparently I do not meet the criteria for any financial help. I don't know what to do and I am so frustrated by being met by a brick wall every time I try and get help. Can you please tell me if there is anything I should be doing?

I am sorry this is so long.

Poppyg1rl

Hi Laura,
I'm a forum member not a member of the helpline team, but had to respond to your post, you poor girl, firstly heres a hug () and secondly get on the phone to the helpline here, number at the top of the page, they are lovely, supportive and knowledgeable. Please give them a ring hun. X
We're always here if you need any help advice or just a moan, pm me if you ever need a chat and here are some more hugs (((()))) X

elnafinn

Hi Laura

I agree and Poppy beat me to it, regarding suggesting you phone the helplines. There is so much to talk about that it would be much easier that way. I am so sorry to read your story. I am sure that the helplines will be able to give you a few pointers of which way to turn next.

Do join us on the forum too, should you wish, you would be made most welcome by us all as we do try to help, advise and support each other.

Elna x (forum member)

tkachev

I'm also so sorry to read about how you are being treated. I am surprised at CAB making you feel a nuisance. As many are manned by volunteers I would phone again and hopefully you can get someone different .

I do know that a partners income can disqualify you from getting benefits as my daughter had the same problem.It really is a catch 22 and so many depend on 2 incomes.

I would suggest you reapply or appeal again to the DLA decision and get some help to fill out the form or add information(dare I suggest from CAB!They really helped with my application) The DWP usually turn down a first claim so please don't give up. Get supporting letters from your GP or other health professionals. Mention everything, painful feet, trouble looking after yourself, washing,dressing, cooking, sleeping difficulties.

If your painkillers aren't working let your GP know so you can get something else prescribed. You need something to help with your current condition. you may be well enough to return to work one day (this is just my hopes as know very little about relapsing polychondritis).

I wish you well and hope you get something sorted out really soon.

Elizabeth

suzygirl

HI, you have been given good advice already. Just wanted to wish you well and say join us on the LWA forum. We all understand what it is like and how difficult it is to cope.

I am sure the helpline will be able to offer good suggestions.

laura14282

Thank you all for your replies. The CAB have been so unhelpful I really wouldn't trust them to do anything again for me. I asked them to help me with my appeal and all she did was write a short sentence saying I needed help with walking and caring for myself on an appeal form. She didn't fill the rest of it in correctly either. I have since been told that a request for an appeal should be thorough and should include things such as medical evidence and point for point reasons why I qualify for each part. I am sure it is just the CAB where I live as no one seems to have anything nice to say about them here.

helpline_team

Hi Laura

Here are some useful links we did not get around to discussing:-

For help with dealing with people at work have a look at our Working with Arthritis booklet: http://www.arthritiscare.org.uk/PublicationsandResources/Listedbytype/Booklets/main_content/WorkingbookletJan11.pdf

Help with benefits DLA and ESA: http://www.benefitsandwork.co.uk/

http://www.arthritiscare.org.uk/Search/search_results_page_view?SearchableText=dla

I hope it all helps,
Best wishes
Simona

dreamdaisy

Hello laura14282, I am also a forum member and have read your first post with more than a smudge of distress. I am in a very different situation to yourself and have no experience of what you are going through but ye gods girl, it would seem that none of the so-called 'professional' responses have been good enough, apart from that of your GP, at least he/she has tried to help. Shame on your rheumotologist, shame on the CAB advisor (albeit they are all volunteers and ergo don't know everything) shame on your employer but you know what? No shame should be attached to you or your partner. I hope that your chat with the Helpliners was useful and please stay in touch with us. I have never heard of your form of arthritis but that does not mean that friendship and support is not available. I wish you well. DD

laura14282

Thank you, again, for your replies. I am feeling a bit more optimistic today and I am determined to sort this out once and for all.

I am going to tackle my request for my DLA application to be sent to an independent tribunal for appeal, all by myself. If it is turned down by them, I will apply again and will keep on applying until they give me it, or I am magically better. I have tried and tried to get help with this to no avail so I may as well get my head down and get on with it!

As for my employer, I am going to send them a letter by recorded delivery giving them one more chance to arrange a meeting with me. If they fail to do this I will seek legal advice.

I have an appointment with my doc on the 8th, I am going to brave it and ask her for morphine patches. I can't keep pretending the pain isn't as bad as it is. Maybe I can doze up enough to actually go back to work? Hehe. Wishful thinking!

If anyone has any advice on how to construct an effective request for DLA appeal, it would be very welcome! Even any pointers on what it should include would be marvellous.

Regards,

Laura x

helpline_team

Hi Laura

Here is a useful link for DLA appeals: http://www.benefitsandwork.co.uk/disability-living-allowance-dla/dla-appeals
Do also have a look at the previous links I sent you.
Good luck!
Simona