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Behçet's UK
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How to contact BSS/Behcets UK

Hi lovelies,

I’m trying desperately to get in touch with BSS. I sent an email last week at the info email & no reply! Does anyone have a direct email address for any one there?

I lost my Mandatory Appeal for my PIP after the investigation 😔. If I go to Appeal’s & loose again I get a Criminal Record!!!

A similar case was in the media of a gentleman in UK with MS..He won his Appeal with the help of MS Society. Wondering if BSS can help me in any way!

Happy Half Term to all xxx

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Hi there

So sorry to hear your appeal was overturned.

Are you with a Centre of Excellence? There is an advisor at each CoE trained in benefits issues. They are in fact funded by the BSS.

Can you tell me more about getting a criminal record if you appeal again, please? I have never heard of that before and have no idea of what crime you could possibly have committed.

All the best

x J x

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As I was investigated & they had footage of me not so ill 🙄 They say I’m committing fraud. As I lost the Mandatory Appeal next stage is Court Appeal. I would have to go to court. If lost then I get done for fraud. They asking for £17,000 back. From Feb 2017 to Oct 2018. That’s including Rd Tax, Carers Allowance, PIP.

Just feeling really low.

I have also emailed Vasculitis UK to see if they can help.

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Oh dear, that sounds like a very difficult situation. I bet the stress and uncertainty are making you feel dreadful. Yes, it definitely sounds like you need solid professional advice. You could also try Scope. There are often local orgs that do disabled advocacy - maybe your CAB could point you to any in your district?

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I got in touch with scope. They directed me to a bureau that help with this kinda case.

The staff at the bureau told me to write the Mandatory Appeal letters, I then emailed them to her & she read them. Then emailed me back to say yes it ok. I then got an invoice for £74!!! All she did was read 2 letters. She never even adjusted or re-writ them. That’s my weekly allowance of ESA! Just fed up now.

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Ack. No wonder you are fed up - that's an exorbitant charge for very little work. Were you made aware it might cost that much? You could always challenge it and ask for a breakdown of their costs and explain your circumstances. They might reduce it. But of course that is all more work and stress. Sigh. Poor you :-(

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I was told it was £45 + VAT!! I have asked her. She said she’ll get back to me on how the invoice was made. 🙄

Just feel like everyone is after that little bit I have.

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The crime is "gaining pecuniary advantage by deception or obtaining money by deception" it is basically fraud but gaining money rather than goods or employment" It can result in a jail sentence depending on circumstances, previous charges, value and unfortunately what magistrate or judge you get.

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info@behcetsdisease.org.uk

Not sure if the address changed when they renamed the charity to be called “Behçet’s UK”

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I’ve had a reply from the email. Thank you xx

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Can they help?

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She asked for more info, which I provided. Not heard since. Getting close to my dead line. Panicking a lot.

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What is the deadline for. The courts or the dhss

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05 March

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Who exactly gave you the deadline. date? Court or the benefits agency?

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DWP.

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Ok. You need to chase the behchets people and get some ideas about what they can or are willing to do. I have not dealt with legal aid for quite a while but I know it changed dramatically and not necessarily for the better. You need to ring around any solicitors you can and ask if you can get legal aid. The other place to ring is CAB. They can be brilliant! You can also ask DWP for more time, although in theory they don't need to do this unfortunately. I am sorry I dont sound overly helpful. Please keep me up to date with how things are going and you can always private message me if you want. Fingers crossed for you,xx

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Thank you Yellowbluebell.

Will keep you updated. Rang CAB they gave me the number of Scope who then gave me another of a bureau that weren’t very helpful & still charging me £74 for reading 2 letters I wrote for my Mandatory Reconsideration. Awaiting Behcets UK response. Just a bummer as all on email. No direct contact.

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Do you have a clear Behçet’s diagnosis and under the care of a Behçet’s Centre of Excellence? The 3 centres have Support Workers who often assist patients with benefits and negotiating the system. I think the Behçet’s UK charity are more of an information, signposting and support service rather than “emergency appeal” response (your deadline sounds pretty soon and they only have a couple of part-time workers from what I saw at the charity’s AGM).

Trying to be objective, the reality is you will not be “jailed” as the healthcare in prison for someone with documented disabilities would be pretty challenging to organise. And you and any court would need some time to prepare evidence and the case. Hopefully you can have friends and family support you through this whole process, and not cause more stress and flares.

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I’ve been told I wouldn’t get prison time but a criminal record!

I too used to work voluntary for BSS & ran the support group in Bham. Filled forms, gave advice on benefits etc. Till they got Support Workers in (who are over loaded with patients now)

I have an appt on Friday m, will speak to Rebecca. Take it from there.

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It's very easy to do things by email and phone but sometimes.clients want more and in your case it would be beneficial for you to meet someone face to face. I have in the past taken instructions from solicitors and built an image of the client amd then had this blown out of the water when we meet at court!! After a few shocks I then insisted on meeting clients before court even if this wasnt needed!! You need to get on to the behchets (probably spelt wrong, sorry) and ask if they will help as an urgency tomorrow. If they are willing to help but time is running out then you need to plead for an extension from dwp. Obviously as i said earlier you need to ring around and seeing you can get a face to face or good o wr the phone advise. You should be able to have a free half hour.appt.xx

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Will try doing that tomorrow if I don’t get a reply from BSS & Vasculitis UK. Thank you for caring xxx

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I was a barrister for too many years and ended up.working solely on mental health cases so I get a bit wound up when stuff like this happens without any regard on how things like an AI disease works or how devastatIng it is for the likes of yourself when their whole life is called into question. Stay strong and chase everyone you can tomorrowxx

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Aaawww. Not all barristers have a heart! I will definitely try tomorrow. My husband is telling me to give up, as it’s making me ill. My eating disorder & depression are creeping back into my life😔. My eldest is looking to get married next year. I can’t even enjoy his happiness.. Just so stressed, feel like running away.

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I know its easy for me to say but your husband is right about it making you ill. You are obviously someone who gets easily stressed and you already have had issues with depression in the past. You need to try tomorrow getting some legal advice and support and if that's not possible then you need to look at what this is doing to you with regards to your health. You should be looking forward to you son's wedding. It's a great time but also stressful and you will have to be at your best to enjoy. My youngest daughter is getting married late April and shes organised everything like a military operation but it's still makes me worried about the big day itself. This is our 2nd wedding in 17 months as oldest daughter got married in 2017!! That was pre pmr and the weight gain. May just wear a tent!! If you had medication for depression you need to see your doctor who will advise if you need to start again. Better that its nipped in the bud now before it gets a hold. Please make an appt too see gp asap. Lovex

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Private messaged you x

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