Campaign for Kalydeco

Signatures 17280 total

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1. 14851
   Name: Anonymous on Oct 26, 2012

   Comments: Kalydeco is urgently needed as it would transform lives for the better.

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2. 14852
   Name: Hollie Evans on Oct 26, 2012

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3. 14853
   Name: Rebecca Mann on Oct 26, 2012

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4. 14854
   Name: Mick Gillman on Oct 26, 2012

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5. 14855
   Name: Mairead Albiston on Oct 26, 2012

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6. 14856
   Name: Elizabeth on Oct 26, 2012

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7. 14857
   Name: Julie Robertson on Oct 26, 2012

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8. 14858
   Name: Fran Hayes on Oct 26, 2012

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9. 14859
   Name: Kristen Beckwith on Oct 26, 2012

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10. 14860
    Name: Sophie Wood on Oct 26, 2012

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11. 14861
    Name: Anonymous on Oct 26, 2012

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12. 14862
    Name: Stephen Mccann on Oct 26, 2012

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13. 14863
    Name: Mary McCann on Oct 26, 2012

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14. 14864
    Name: Chris Hyde on Oct 26, 2012

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15. 14865
    Name: Karen Millar on Oct 26, 2012

    Comments: I personally knew a young girl who died 2 yrs ago. She had the gene & this treatment would have made a difference to her.

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16. 14866
    Name: Owain McGuire on Oct 26, 2012

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17. 14867
    Name: Rachel Stoakley on Oct 26, 2012

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18. 14868
    Name: Lynne Welsh on Oct 26, 2012

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19. 14869
    Name: Colin Cornwall on Oct 26, 2012

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20. 14870
    Name: Lisa Revitt on Oct 26, 2012

    Comments: Every little helps.

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21. 14871
    Name: Kieran Reay on Oct 26, 2012

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22. 14872
    Name: Nadine Eisenberg on Oct 26, 2012

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23. 14873
    Name: Kate Maguire on Oct 26, 2012

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24. 14874
    Name: Christine Hyde on Oct 26, 2012

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25. 14875
    Name: Carl Foulstone on Oct 26, 2012

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26. 14876
    Name: Olivia Mcgreavy on Oct 26, 2012

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27. 14877
    Name: John Coombes on Oct 26, 2012

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28. 14878
    Name: Lewis Golledge on Oct 26, 2012

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29. 14879
    Name: Nick Pinkham on Oct 26, 2012

    Comments: please make this available

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30. 14880
    Name: Neetu on Oct 26, 2012

    Comments: LOL!! Of course not. That is WAY too funny. Sorry, but vtainy is not a good reason on why anyone would give you thousands of dollars. Could you imagine the backlash that a company would receive for doing such a foolish thing with their money at a time of high unemployment? Just get another/better job.

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31. 14881
    Name: Jacqui Spink on Oct 26, 2012

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32. 14882
    Name: Sarah Kemshall on Oct 26, 2012

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33. 14883
    Name: Jennifer Edwards on Oct 26, 2012

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34. 14884
    Name: Ash Hill on Oct 26, 2012

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35. 14885
    Name: Andrew Baldwin on Oct 26, 2012

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36. 14886
    Name: Josephine Obrien on Oct 26, 2012

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37. 14887
    Name: Josephine Obrien on Oct 26, 2012

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38. 14888
    Name: Wira on Oct 26, 2012

    Comments: Will Commissioning Genocide help the new Health Reforms?The new health remrfos are being built around the concept of commissioning which is fundamentally about ‘What to acquire’. With the previous Parliamentary Health Committee severely criticising standards of commissioning, the NHS has now embarked upon a set of remrfos which put ‘clinical commissioning’ at its heart. Why not have qualified clinicians taking expert decisions about ‘what to acquire’? They certainly understand the technical and human requirements but are they as well versed in the business and legal necessities? Has this new term of ‘clinical commissioner’ been defined and does that mean that the whole role from user consultation to acquisition, delivery and satisfaction is to be directly undertaken by a clinician? The loose definition of commissioning has tended to focus upon procurement. This has allowed the debate to be turned into one of ‘Make or Buy’ with the inevitable spectres of privatisation and divisiveness being raised. Related to the key skill of ‘What to acquire’ is the question of ‘how to acquire?’ There are a wide range of ways of how to acquire from competitions to grant aid and forming partnerships, employee owned organisations and mutuals. No matter what route is chosen, it is public money whose spending is subject to value for money provisions. Some years ago, after assisting DCSF with their Five Year Vision of Commissioning, we identified that there were massive workforce development requirements in order to upskill the new entrants. Our commissioning analysis of commissioning at that stage identified a need for increased professionalism helped by the formation of a professional institute. Key educationalists and social workers were being taken from the front line and expected to handle the complexities of commercial arrangements with little training, guidance, mentoring, reference material and professional standards. At least accountants have Standard Statements of Accounting Practice, regulation and a standards board. Where is the equivalent for commissioners? The Institute of Commissioning Professionals was established in 2007 after a market survey indicated that over 93% of commissioners felt they needed a professional body to improve standards. A member survey undertaken in 2008 revealed that 91% thought that they had less than 3 years to deliver the vision. During that period, the IoCP has established an accredited membership exam, is pursuing voluntary registration of commissioning professionals and developed the concept of Commissioning Excellence.It was apparent during the period that as one University Director put it, the PCTs have ‘Taylorised’ their commissioning activity with the tasks broken down into specialised components where staff were unable to see the bigger picture. This led to criticism from workforce development staff that commissioners were often unable to take a strategic view.It also meant that commissioners skills did not fully meet those defined in the National Occupational Standards. We would expect the requirement in the GPCC’s to be for broader skills and that their commissioners should attain the National Occupational Standards.In the new world, commissioners require to take a strategic view and we applaud the efforts being made by NICE and SCIE to provide an evidence base for commissioners. The focus is now to learn from the experience of the past on implementation and how to embed this organisationally.In the recent clustering of PCTs, where in some areas of London, three PCTs have been combined into one with a reported loss of 60% of staff has destroyed capacity which has been painstakingly built up through the ‘World Class Commissioning’ era. It doesn’t look as if there is any movement to build upon the ‘Taylorised’ skills of those remaining. In addition, the Council budget reductions have also led to the elimination of commissioning roles in key councils. When there are calls for Councils to provide support to the GPCCs, again we fail to see where this will come from. Given the large numbers of posts which have been eliminated, we have termed the cull ‘Commissioning Genocide’.Whilst green shoots will appear, the position on ‘clinical commissioners’ is just a rerun of 1997. Clinicians will be taken off the job and without guidance, will go through the same experience of other commissioners over the past few years. The scale and pace of reform again lacks a clear foundation of commissioning professionalism. This time, it is complicated by the need for efficiency savings and the inevitable political fallout. We have been informed that encouraging commissioning professionalism is low down the level of priorities. How can an effective system be built without embedding a higher level of professionalism into organisations? The Health and Social Care Bill will require GPCC’s to gain authorisation and to submit its Commissioning Plan. How many GPs have produced a Commissioning Plan? The clear focus is on authorisation but where are the experienced clinicians who have produced a Commissioning Plan? Its time for clear leadership in this area and without it, the remrfos will collapse as did World Class Commissioning. If commissioning skills are not embedded into the GPCCs, then the remrfos will lack foundation and collapse. Commissioning genocide will only help if it is used to learn the lessons of the past and develop commissioning like other mainstream professions. This is a complex world where the detail does need to be fully thought through or else scarce resources will be wasted rather than being better used saving lives. Doug Forbes is Director of the Institute of Commissioning Professionals, a not for profit member owned organisation dedicated to improving commissioning standards.

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39. 14889
    Name: LUCY HACK on Oct 26, 2012

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40. 14890
    Name: Lilia Gelba on Oct 26, 2012

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41. 14891
    Name: Kris Pedersen Kirkwood on Oct 26, 2012

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42. 14892
    Name: Sarah Cooper on Oct 26, 2012

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43. 14893
    Name: Diane Simpson on Oct 26, 2012

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44. 14894
    Name: LAUREL O'BRIEN on Oct 26, 2012

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45. 14895
    Name: Joanne Scovell on Oct 26, 2012

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46. 14896
    Name: Anthony Johhnson on Oct 26, 2012

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47. 14897
    Name: Michael Evans on Oct 26, 2012

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48. 14898
    Name: Frances O'Connell on Oct 26, 2012

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49. 14899
    Name: Chris Parkin on Oct 26, 2012

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50. 14900
    Name: Andrew Cleaveley on Oct 26, 2012

    Comments: I am both elated and saddened to participate in this petition. I am elated that at last some real progress is made to help a condition that shortened the life of someone very dear to me. I am saddened that yet again in our "humane society" money seems to be an inhibiting factor in the solution reaching the people it should be helping.

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