The wait continues! The decision never arrived on 1/7 but postponed until 5/7. The decision never arrived on 5/7, but postponed until 11/7. This decision has now been due since 22/07/2015!! In the House of Commons, on Tuesday 5/7, not just ONE but TWO questions were raised to the Secretary State of Health regarding Abi's impossible position. First, Shadow Health Secretary Ms Diane Abbott, raises Abi's personal situation and her campaign in the House of Commons. The Shadow Health Secretary illustrates the wait that Abi and now hundreds of other patients face regarding medicines they desperately need from NHS England who are delaying the release of their decision to fund due to the fall in the value of the pound. Diane Abbott asks our question to Jeremy Hunt why no contingency plans were put in place to ensure that patients like our young daughter will receive the life saving medicine and treatments that they need. Jeremy Hunt commits to look into Abi's case adding that he wouldn't want anyone to be deprived of vital life saving drugs because of exchange rate fluctuations and you can hear his full response on the following link: http://parliamentlive.tv/event/index/2f58c7f6-e96a-4646-8775-c0b424578cd1?in=11:49:46&out=11:51:37 Then our MP, Andrea Jenkyns raises the SECOND question in the House of Commons regarding our impossible position to George Freeman, the Minister for Life Science. Our MP advised the Secretary State of Health how we have been subject to frequent delays and miscommunications. Andrea asked what steps the government will take to ensure decisions on treatment such as this are taken in a timely fashion and that families are kept updated on the progress of decisions. George Freeman acknowledged the importance of this point explaining that NHS England are unable to make a decision until the court decide whether PreP HIV Prevention should compete along with other candidate drugs which include the drug Abi has waited so long for. George Freeman acknowledged the timeliness of such reviews and that he is leading on an Accelerated Access to speed up on the way these decisions are taken. You can hear George Freeman's reply on the following link: http://parliamentlive.tv/event/index/2f58c7f6-e96a-4646-8775-c0b424578cd1?in=12:25:54&out=12:26:48 A 15 month wait for medicine which sits on the shelf of every NHS Trust in England is simply intolerable for a child who needs a kidney transplant. To have to wait for this decision before the wait can begin for a transplanted kidney is nothing less but unacceptable and unsatisfactory. The new deadline for a decision - 11th July 2016!!!!! Thank you to everyone who continues to support Abi's cause and in doing so joins us in driving much needed change for so many patients.