Tourettes Action
1,090 members644 posts

Listen Up!!!

Listen Up!!!

Listen Up!!!

Right, listen up everybody, this is important. Today in the House of Lords they are discussing the planned changes to Disability Living Allowance, if it gets through and the government get their way many of us will lose our DLA. So listen very carefully, I will say this only once, I need you to follow these instructions VERY CAREFULLY!

1.Create a new email.

2.On the subject line type “CLAUSE 80 - AMENDMENT 50E”

3.Copy and paste this piece of text into the email.

I’m emailing you in response to the current debate within the House of Lords with regards to the proposed changes to Disability Living Allowance. As a [person with Tourette’s syndrome (TS) / parent / carer / friend of a person with Tourette’s syndrome (TS), Delete as applicable], I would like to bring to your attention some important points, which I would like you to consider.

Tourette’s syndrome (TS) is an inherited neurological condition, affecting more than 300,000 adults and children in the UK. The key feature is tics, which are involuntary and uncontrollable sounds and movements. In most cases TS is also linked (co-morbid) to other conditions such as Obsessive Compulsive Disorder (OCD), Attention Deficit Hyperactive Disorder (ADHD) and some mental health conditions such as depression.

Many people with TS will be affected dramatically by these proposed changes to the Disability Living Allowance (DLA). "[I/ my son / my daughter / my friend rely/relies]" on my current DLA payments heavily to help pay for the expenses [I/they] incur due to [my/his/her] TS and co-morbidities ("[Click here and add your own, eg. depression, ADHD, etc.]" ).

The DLA that "[I/ my son / my daughter / my friend]" currently "[receive / receives]" goes towards "[Click here to add your own]" [The following just applies to me but it’s here as an example: ready prepared foods as I have problems cooking for myself due to my tics, extra transport costs as I am unable to drive due to my tics and often find it difficult to use public transport due to anxiety issues relating to my vocal tics, and my mobile phone ensuring I remain in touch with others whilst out and about as I have frequently encountered verbal abuse from strangers due to my vocal tics].

The proposed changes to which I would particularly like to draw your attention are:

1.The reduction from 3 care component rates to 2 care component rates. This will effect most people with TS that are currently in receipt of DLA, in the proposals the government state that “support should be targeted at those disabled people who face the greatest challenges to leading independent lives” but in order for the government to reach this goal they state “It is likely that some people with lesser barriers to leading independent lives will receive reduced support”. As many DLA claimants with TS only receive the lower care component that means that many of us are likely to lose the DLA payments that we so heavily rely on.

2.The use of face-to-face interviews as part of the assessment process. This is a highly inappropriate move as the introduction of such assessments would amongst other factors be for a person with TS a very stressful experience. There are other concerns I have with this proposal:

•The use of independent healthcare workers, these healthcare works will be employed by an independent company with set targets with regards to numbers of successful applicants. These healthcare workers will I assume be non-specialists with very little knowledge of TS and the challenges that a person with TS would face on a daily basis.

•Evidence provided by the applicant and their GP, consultant (TS specialist) or social worker would give a more accurate and relevant picture of how TS effects the applicant.

•These face-to-face assessments with a non specialist would be a waste of resources and render the application process longer and more complicated. These interviews would incur additional costs thus diverting available funds away from those who need the services.

As you can see these proposals for change will affect many with TS greatly and I urge you to oppose the changes to DLA, to call for the Government to reconsider its decision to implement these changes.

If you would like to find out more about Tourette’s syndrome please take a look at the Tourettes Action website.

Yours sincerely,

Add your name here

4.Tweek the email, add any information that would be relevant to you where the text is in italics.

5.Copy and paste his list of email addresses and paste into the “to” line on your email, ensuring that the commas are also copied and pasted.,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,

6. Then send the email.

7. Please then pass this blog post on to your friends and family and them to do the same. Thanks for doing this and helping to fight these unfair changes.

Catherine xx

3 Replies

i have sent an -e-mail! so lets se what happens



You are an absoulute star!! Keep up the fight! xx


thanks and you tooo!