Katy Brown’s letter to George Freeman
Further to the recent protest outside Parliament and David Cameron’s answers to the questions posed by Greg Mulholland during Prime Minister’s Questions, Katy Brown received a letter from Minister for Life Sciences, George Freeman, and below is her reply:
Dear Mr Freeman,
Thank you for your reply to my letter.
I was very disheartened by both the Prime Minister’s words at PMQs last week, and the content of your letter. Mr Cameron used very carefully chosen words which in effect amounted to no commitment whatsoever. And then I received your letter which I was hoping would provide more substance. It did not. The significance of phrases such as “I hope”, “I understand” is such that they allow you to spin a positive message without personally committing to anything. You have said repeatedly that this is a matter for NHS England, yet you know mistakes have been made, mistakes for which there are serious consequences. If it is not your role to ensure a resolution, then what exactly is your job? To act as the messenger and write letters that answer nothing? If so, then you are a very over-qualified postman.
Whilst games are being played, lives are being put at risk. This is not acceptable. I am so unbelievably fed up of being fed a line and fobbed off that I could weep. Infact I do weep on a daily basis, and today on Mother’s Day I am not able to relax with my children, but yet again am fighting a battle and writing to you. Because right now you are failing my son which means that I am failing my son because I am trying my hardest but I cannot get him what he needs and deserves. In your letter you said you were pleased that I had acknowledged that you were doing all you could. I never said this. I said I acknowledged and applauded the work you are doing to speed up access to innovative
medicines, but this comes far too late for Sam. By all means use Sam’s situation as a case for change to promote your work, but in the here and now, there is far more that you could be doing to bring Sam’s situation to resolution. Hold NHS England to account for their mistakes, ensure that with mistakes there are consequences for those who have made them. Put measures in place to ensure it cannot happen again. Admit that your Government’s reorganisation of the NHS and short sighted abolition of AGNSS is the root cause of this sorry mess, and most importantly ensure that sufferers like Sam caught in the middle of all of this are looked after and get what they need
Lastly you mentioned in your letter that NHS England are in discussion with Biomarin about continuing responsibility for the provision of treatment. I have read Biomarin’s response to NHS England and quite frankly it is damning. I would prefer it if NHS England focused its time and resources in solving the problem rather than trying to find ways to shift blame. I am continually appalled by the lack of accountability taken by both the Dept of Health and NHS England.
I will not stop fighting for Sam. We have significant media support, including a piece in the Guardian last week….this issue will not go away. I will continue to scrutinise and challenge. Given how many times my trust has been broken by words that have no meaning, I cannot sit back and accept that all of this is “in hand”. It is not. The truth is there is no robust process for ultra rare diseases, nor will there be by the end of April.
If I have got this wrong then you need to convince me otherwise with commitment and facts, specifics and dates, not woolly, indirect words filled with loopholes and escape routes.
Stop this madness now, and agree to interim funding. Or show me the evidence clearly to give me the confidence I need.