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Click on any of the photos above to access a short video film on the impact that PH has had on the 5 people featured who all live with Pulmonary Hypertension (PH)
INTRODUCTION
Welcome to this special section of our website dedicated to the Pulmonary Hypertension Association UK’s (PHA-UK) challenge to the preliminary recommendations made by the National Institute of Health and Clinical Excellence’s (NICE) in their Appraisal Consultation Document (ACD) on treatments for Pulmonary Hypertension (PH) published on the 3rd of March 2008. To view the NICE ACD click here
OUR CONCERNS
If the NICE recommendations are implemented it will see the removal of a whole class of drugs used to treat Pulmonary Hypertension. All sides of the PH community agree that this would be a huge step backwards. With 75% of people with PH living longer and 83% of them enjoying a fair to good quality of life, treatment and care for people with PH in the UK is the envy of the world. PHA-UK’S members and their supporters want to keep it that way and we are doing all that we can alongside the other consultees and commentators on the NICE process to get them to change their stance.
TAKING THE FIGHT TO WESTMINSTER
Thanks to PHA-UK trustee & leader of the All Party Parliamentary Group on PH, Nick Ainger MP, together with his fellow trustees and PHA-UK’s small army of members, supporters, families and friends, a series of activities have taken place at Westminster to highlight the major concerns surrounding the NICE preliminary recommendations.
A Parliamentary Committee of Inquiry, prompted an Early Day Motion (EDM 1173 signed by over 100 MPS,) which helped secure a Westminster Hall Debate on the 2nd of April, attended by Health Minister Ann Keen MP. You can click here to watch/listen the Westminster Hall debate again.
The fantastic efforts of our 2,000 members, their families, friends, carers and supporters meant that a PHA-UK delegation led by our patron Dr Chris Steele were able to deliver a petition containing 32,000 signatures to 10 Downing Street on the 2nd of April calling on NICE to change their stance. (See photo at the bottom of this page)
We now await the outcome of the NICE Final Appraisal Determination (FAD) in the coming weeks and we are preparing for all eventualities.
Click here to see a cross section of the media coverage achieved including video interviews with Nick Ainger MP, leader of the All Party Parliamentary PH Group, Professor Andrew Peacock, Iain Armstrong, PHA-UK Chairman & PH Nurse Consultant, Dr Chris Steele from ITV’s This Morning & PHA-UK Patron as well as features/presentatiosn with PH patients Dawood Musselman, Ann Lacey, Mary Walker, Amanda Henchliffe, Sue Townsley and Anna Baker.
HOW YOU CAN HELP
The cost of managing and executing this multi-faceted campaign to try and convince NICE that their recommendations are not in the best interests of Adults with PH or the NHS, even with many people providing their time freely, is considerable.
- Any donation that you can make to support our work will be greatly appreciated. Click here on details on how you can donate online or via post.
- If you’d like to hold a fundraising event or receive one of our collection boxes please email office@pha-uk.com for a fundraising pack.
- Perhaps you’d like to make your contribution by securing one of our excellent books or a teddy bear? We have many forms of merchandise that you can purchase via our site. Click here to visit our online catalogue.
MEDIA ENQUIRIES
The PHA-UK Press Office can put members of the media in touch with PH experts, charity spokespeople or one of our of case studies across the UK. Telephone Paul Pennington/Kate Spencer/Bernadette Moore or Hilary Franklin on 0207 272 3915/07711 181 374 or via media@pha-uk.com
If you’d like a copy of the Parliamentary Inquiry report or a transcript of the Westminster Debate email the PHA-UK press office media@pha-uk.com or call 020 7272 3915
A full backgrounder document on PH is available by clicking here
A fast facts document on PH entitled Pulmonary What??? Can be accessed here.
To access two of our most recent press release
A high resolution photograph of PHA-UK delegation handing in the petition containing 32,000 names to 10 Downing Street (Pictured left to right: Nick Ainger MP, PH patient & PHA-UK trustee Sue Townsley from Coventry, PH Patient Amanda Henchliffe from Derbyshire, PHA-UK Chairman & PH Nurse Consultant Iain Armstrong, Dr Chris Steele & PHA-UK/UKHM’s Paul Pennington) is available by clicking here.
To access the NICE Preliminary Recommendations Appraisal of treatments for Pulmonary Arterial Hypertension. Click here to visit the NICE website
