Donate

 

 
ForumForumDiscussionsDiscussionsNarcolepsy and ...Narcolepsy and ...DLADLA
Previous Previous
 
Next Next
New Post
 29/01/2012 02:56
 
Thank you.

Right now I do feel alone as everyone around seems to be determined to make life as difficult as possible. Yes I was turned down even after they had re-assessed it and now I have to go to tribunal. I have not had one positive experience with my narcolepsy. As mine involves sleeping for very long periods (comatose), and no one else has the same in the whole of the country it doesn't help.

Thank you again for your kind words

Tara
New Post
 30/01/2012 08:02
 

tara

The problem with narcolepsy is that everyone experiences it differently; that's why diagnosis is so difficult, why vreatinb drug regimes is so difficult and why living with it is so difficult. We sort of know how you feel but honestly with narcolepsy its difficult. I constantly despair - as does Margaret on the helpline of having to say the things time and again to individuals who are paid to know better.

With regard to your DLA I do think talking to MArgaret will help. The helpline is operating on Tuesday and Thursday between 5 and 7 in the evening. Do try to contact her for help.

John

New Post
 09/02/2012 01:40
 
Hi John,

I am going to go to appeal as I have now found out information regarding my case which shocked me. Apart from my neurologist and obviously my sleep specialist no other health care professional I have met over the last three years have a clue. As for GP's thinking they know it all about narcolepsy, they need re-training, especially when it comes to different types of narcolepsy.

I followed all the advice on the web site and they still refused outright. Twice. I now know why and they have made a big mistake.

The problem with Narcolepsy is, not the illness itself, it is the prejudiced you face from people. As it is an invisible illness people always will make their own assumptions which are normally wrong.

I am sick of being told to pull myself together, make an effort, don't be lazy, just get up and start living not lying in bed wasting your life etc. I could carry on for hours with the comments which I am sure most people with Narcolepsy are used to hearing.

Opinions really do need to change regarding this disability, AND YES it is a disability for anyone questioning this.

Thanks John

Tara
New Post
 09/02/2012 08:23
 
 Modified By johnc  on 13/02/2012 12:06:33

Hello Tara

You know an average person spends one third of their lives fast asleep and lack of sleep can cause so many problems yet how much time do doctors train on sleep medicine in the UK? Nothing; no time isallocated for sleep studies in any of the medical schools certainly in England. Is it surprising that GPs don't understand the illness? That is the size of the challenge.

However we do have some positives; the DWP now have narcolepsy as a recognised condition on the ESA list which should make it easier to get basic ESA. We are trying to do the same theing with DLA but it takes time and with all the benefits changes due PIP will be in before we can get any change to DLA. ANd PIP does worry me! It will be very difficult fro a person with narcolepsy to get PIP.

I was talking to someone yesterday about of narcolepsy was a disability and of course it is. I am going to go through my files this morning and fins the definition of disability in the 2010 Act and then you can see how narcolepsy fits is. So, until later ......

New Post
 12/02/2012 21:29
 

Hi John,

GP'S should learn the following sentence:

IF YOU HAVE NOTHING NICE TO SAY THEN DON'T SAY ANYTHING AT ALL.

Then they won't mess up anyone else's application for DLA.

Tara

Previous Previous
 
Next Next
ForumForumDiscussionsDiscussionsNarcolepsy and ...Narcolepsy and ...DLADLA

Forum terms & conditions: please read before using the forum
Minimize
The views on the online community do not represent those of Narcolepsy UK. To provide the best possible service, we keep an active interest in the topics being discussed, while making sure that the forum remains strictly for your discussions.

Your Content must:

  • be accurate where it states facts
  • be genuinely held where it states opinions
  • comply with applicable law in any country in which they are posted.

Your Content must not:

  • contain any material which is defamatory of any other person or organisation
  • contain any material which is obscene, racist, sexist or offensive in any way
  • engage in bullying on the site
  • infringe any copyright, database right or trade mark of any other person
  • be likely to deceive
  • be made in breach of any legal duty owed to a third party such as a contractual duty or a duty of confidence
  • be used as an advertisement or to promote a survey
  • be likely to disrupt our service in any way
  • give the impression that they emanate from us where this is not the case
  • advocate, promote or assist any unlawful act such as (by way of example only) copyright infringement or computer misuse.
     
Common sense & disclosure of personal information

Please use caution and common sense when using the Site. Keep your password secure and contact us if you think it might be used by someone else. We cannot guarantee in any way that other registered users of the forum are who they say they are, are always honest and acting in good faith. Any registered users who we feel might be abusing the spirit of the forum and who fail to comply with the terms and conditions above could have the privilege of using the site removed from them.

Content on this site is monitored on a daily basis. If you read a post that you find breaks any of the above regulations, press the report post button and that post will be flagged up to a moderator. We reserve the right to reject, block, suspend or remove content at any time and at our sole discretion. We in no way guarantee that your content will be displayed on the Site.

Always exercise caution on the site. Do not disclose your full name or have your user name as your full name. Do not give details of your phone numbers, email address, home address or of your workplace to any person.
 

Indemnity

You agree to compensate the charity and our respective directors, officers, employees, and applicable third parties in full from and against all third party claims, liabilities, losses and expenses (including reasonable legal fees) suffered by such persons arising out of, or related to or which may arise from Your Content and/or any breach by you of any term of this Agreement.



 

Privacy Statement   |  Terms Of Use
Copyright 2010 Narcolepsy UK (Charity Registration No: 1144342 Scottish Charity No SC043576)