Risk of narcolepsy with Pandemrix in England +++ Hypocretin falls as narcolepsy develops +++ Information on familial narcolepsy in the media +++ Growing evidence of Pandemrix link to Narcolepsy +++ More Pandemrix News +++ Xyrem and Alcohol
What is narcolepsy?
Excessive Daytime Sleepiness (EDS)
Who does it affect?
What causes it?
Seeking medical help
How is it diagnosed?
Applying for Xyrem
Applying for Funding
Taking further steps
Epworth sleepiness scale
Find your local sleep centre
Living with it
DVLA rules on Narcolepsy
If you dont tell the DVLA
After informing the DVLA
Getting your new licence
Telling your insurance company
Holidays with narcolepsy
Council Tax benefit
What is Main Council Tax benefit?
How do I claim Council Tax Benefit?
Other discounts and housing benefits
What is the Second Adult Rebate?
Will I get this benefit if I have Narcolepsy?
Disability Living Allowance
Who can claim?
How to claim
Sections of the DLA
The CARE component
The Mobility Component
What does it mean?
Drafting a Supporting Letter
Filling out your application
What will affect my claim?
What are the problems?
Employment and Support Allowance
Free NHS prescriptions
The 'bedroom tax'
Assistance with prescription costs
Personal Independence Payment
The Benefits Cap
Charity greeting cards
Give as you live
Virgin Money Giving
News & Events
Well Done Jayne
Weight and orexin
Pandemrix story - beginning of the end?
Narcolepsy UK's response to BMJ paper
Pandemrix and narcolepsy in England
Hypocretin falls as narcolepsy develops
MOG and familial narcolepsy
More Pandemrix news
Differing presentations of narcolepsy
New information from Finland
Complications after H1N1 'flu
The VAESCO Report
Help in a study
H1N1 'flu and narcolepsy
Is Pandemrix narcolepsy batch related?
Support from the Worshipful Company of Actuaries
A Really Useful Donation
International Paediatric Sleep Association Conf
News Archive ...
Resources and links
Register for email updates
Applying for Funding
DID YOU KNOW?
Narcolepsy UK are working on a range of leaflets, the first of which can be downloaded from
The Initial Application for Funding
A Step by Step Guide
Check with your Consultant that he has all the evidence he needs for the clinical justification about the drug that the PCT will want. Make sure your Consultant puts forward a very clear, strong and positive recommendation for the drug. Clinical trial information can be obtained from the pharmaceutical company manufacturing the drug and they may also have copies of expert opinion
Start to work on your personal statement and always include a photograph.
In your personal statement outline your situation, family commitments, medical history and any exceptional circumstances either clinical or social, that you want the PCT panel to take into consideration when they are reviewing your application
Find out the name, address and email contact details of your PCT (or LHB – Local Health Board – in Wales). Find out the name of the Patient Advisory Liaison Officer (PALS) at the PCT who may be able to help you with policies and procedures as well as email addresses of those involved in your application
Find out email addresses and names of the PCT Chief Executive and Chairman
Send out the enclosed
Freedom of Information letter
to the Chief Executive of the PCT; ask for this information as soon as possible
Read and familiarise yourself with the PCT policies to make sure they are being followed correctly; pay particular attention to time lines and the frequency and dates of meetings so you can have your documents ready
Finalise your personal statement and send it to your Consultant. Ask for it to be included in the application that is being submitted to the PCT. Make sure that you include everything that you want the panel to know about you. You are the best advocate for the treatment you need, no one else, absolutely no one else will have the same level of commitment to get the treatment you need. You can and should specifically request that the personal statement which has your personal details is not removed from the pack. The funding process can appear a little (or a lot) dehumanising and you can request your personal statement is not made anonymous. The funding panel is obliged to consider personal details in deciding policy for funding.
Ask your Consultant and the PCT in writing to copy you in on all correspondence
Specifically request in writing that you be informed of the decision of the panel without delay. Ask to be copied in on the decision making letter. See the Department of Health website:
Keep a diary of phone calls and who said what. Make sure you date and time them along with copies of everything you send out. Ask for email acknowledgement that your information has been received by the correct department.
Hope for a good result but start preparing mentally for a long drawn out battle; start preparing for the appeal!
Become a Member
Copyright 2010 Narcolepsy UK (Charity Registration No: 1144342 Scottish Charity No SC043576)