Queen of Sleep

Living with narcolepsy: a personal journey

Archive for the ‘Bureaucracy’ Category

ATOS HEALTHCARE Recruitment Day Picket – 14th of June 2011

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Sometimes easy to think ” What is going on in the world! Why is everything so difficult? Why isn’t anybody listening? Is it just me who can’t manage? Why does the Job Centre lose everything I send them? Why does it seems like there is a ghost in the admin-machine, regularly sending me the wrong letters and sometimes not any at all? Why is it that when I try to fill in the ATOS medical form not a single question is applicable to a neurological disorder? Why do I have to chase up committees, secretaries and call centre staff on a regular basis? Rant! Rant! Rant! All these thoughts race around in my mind and suddenly I look up at a stand outside the local Argos. It has two rather pale people in their mid 40’s-50’s distributing flyers, providing information on ‘Being a Carer’. I get a leaflet and read: ATOS Healthcare Recruitment Day Picket!  At first I am a little confused as to the meaning of the headline. The word recruitment and picket doesn’t seem to gel in my mind but then I get it. Two local charities are picketing outside the recruitment office of ATOS warning potential new employees of ATOS “about their despicable” reputation. It is obviously also an opportunity to voice a rejection of the NHS reforms currently being under scrutiny. The leaflet says that the financial crisis is being used as an excuse to drive through the ConDem government’s ideological attack on the welfare state. ATOS’s multi-million contract with the government  is to help achieve this.

The picket will take place on the 14th of June: 5pm – 8pm at Atos Origin, 4 Triton Square, Regent’s Place, NW1

For more information on the charities: IHOOP, DPAC  and many many more…


Written by Queen of Sleep

June 14, 2011 at 4:16 pm

38 Degrees | Tell your MP to protect the NHS

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All of who live in the UK and care about the NHS follow the link below and tell your MP that you are NOT happy about the proposed changes to our National Health Service. All you need to do is watch Michael Moore’s Sicko to understand how lucky we are to have access to such amazing health care!

38 Degrees | Tell your MP to protect the NHS.

Written by Queen of Sleep

April 1, 2011 at 3:20 pm

Help NN Fight the New Federal Budget Cuts

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Help NN Fight the New Federal Budget Cuts.

Narcolepsy Network needs you help to Fight the New Federal Budget!

If you are a US citizen just click the link above and follow the instructions.

Written by Queen of Sleep

February 18, 2011 at 11:00 am

Posted in Bureaucracy

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Rare Disease Day 2011

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In 38 days on the 28th of February 2011 Rare Disease Day in Europe will take place. If you want to  get involved in supporting this important day and event go to RareDiseaseday.org’s website and read and download appropriate materials here.

EURORDIS and National Alliances for rare diseases are inviting all patient organisations, caregivers, researchers, public authorities and companies developing orphan products to join in this observance. The purpose is to focus attention on rare diseases, the challenges encountered by those affected, and the inequalities that rare disease patients face every day. Want to organise an awareness-raising event? Contact your National Alliance.

You’re a European organisation and your country doesn’t have a National Alliance or a country organiser? You can still get involved, contact EURORDIS at: rarediseaseday@eurordis.org
Want to show your support of this special Day? Add your name to the list of ‘Friends of Rare Disease Day’.

Written by Queen of Sleep

January 20, 2011 at 11:01 am

Trustee Week 2010

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It is crucial for a charity to have a number of trustees. Trustees are the people in charge of a charity. They play a vital role, volunteering their time and working together to make important decisions about the charity’s work. Trustees’ Week is an annual event to highlight the great work that trustees do and to draw attention to the opportunities for people from all walks of life to get involved and make a difference. Many charities have empty chairs for people who are interested in joining so contact the local or national charity of choice and ask if you can make a contribution by sharing your skill sets towards helping people, helping the charity help people help themselves etc.

To find out more about the responsibilities involved in being a trustee: The Essential Trustee – The Charity Commission

To find out more about Trustee Week: Trustee Week 2010


Written by Queen of Sleep

October 27, 2010 at 1:01 pm

Posted in Bureaucracy, News

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Support Science is Vital – Sign the Petition

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‘Science is Vital’ has been established by the Campaign for Science and Engineering (CaSE) – known as ‘Save British Science’ in the 1980s.  This is a non-party political organisation.
Science is vital kicked off with a Facebook campaign led by a group of scientists. They have teamed up with support from the Campaign for Science & Engineering to start a group called Science is Vital calling on concerned scientists, engineers and supporters of science to sign their petition and campaign to prevent destructive levels of cuts to science funding in the UK.
They’re basically aiming to noisily demonstrate the weight of concerns across the UK over the decisions the Government is currently making and ensure there is a recognisable lobby group for them to listen to.
The campaign focuses on a clear call – the petition asks the Government: “to recognize that science is vital, and to lay out a supportive strategy for UK science and engineering, maintaining a level of investment at least in line with economic growth”

Written by Queen of Sleep

October 11, 2010 at 7:37 pm

Athos, Therapy, Sodium Oxybate update

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I am so relieved to get a letter from Athos Medical Services granting me Employment and Support Allowance for another six months.  Perhaps I shouldn’t be surprised but I am so used to being misunderstood/ not listened to  by medical professionals i.e. not specialists.

I am having a couple of weeks break from my therapy.

I have made contact with my local Primary Care trust via the Patient Liaison Service. They put me in contact with a the main body of the “prescribing committee”. I asked if they had received my application for Sodium Oxybate. Unfortunately, she answered that my name did not sound familiar. They log all requests, put it in a queue for the committee, and its then given a date for when it will be brought up and decided upon. My contact said she was normally very busy and gave me the number of her assistant. I contacted her assistant, who was very helpful and sweet, who told me to email all details to her so she could chase up the application for me. Apparently there are 2 systems that the application goes through. Hopefully I will get a reply soon.