B positive

It's been a while since we blogged but, amazingly, we still wait to get access to Orkambi. The CF Trusts' campaign has led to the Heath Select Committee seeking evidence from people. So, here's what I've just submitted.  Good afternoon It was almost three years ago that my wife and I became very proud parents to a wonderful girl. She was everything we ever dreamed of. Within a fortnight of our dreams coming true, we were hit with the bombshell of her diagnosis of Cystic Fibrosis. The staff at our hospital were, and continue to be, superb and incredibly supportive. At our first meeting with them, they explained that, for the first time, there are pharmaceuticals available which can treat the underlying cause of the disease and that there are reasons for optimism. Since then we’ve devoured research papers, taken part in clinical trials and had that optimism repeatedly dashed by the inability of the two parties to come to an agreeme...

Ive written a letter to the new health minister. And here it is. Dear Mr Hancock Congratulations on your recent appointment as Secretary of State for Health and Social Care. I am writing to you as a concerned father to a two year old girl who you are in a position to help. My daughter has Cystic Fibrosis (CF) – an incurable life-shortening genetic disease. She is in the care of the excellent staff at Royal Manchester Children’s Hospital and, like the thousands of others with CF in the UK, has a daily routine of treatments to maintain her vital functions as long as possible. Much of her treatment involves the consumption of medications which help prevent infection taking hold and destroying her ability to breathe. This masking will only last so long and there is a grim and inevitable end point to this path of treatment. New treatment options are the things which I cling to, to provide my daughter with an alternative route as outlined above. News of clinical tria...

Among many others, I've just read the remarkable statement from Vertex Pharma which appears to draw a line under the negotiations for access to Orkambi - and other drugs - for British patients.  Having wrote and deleted a number of tweets in response (mainly due to profanity), I feel the need to write something longer - this is catharsis.  Orkambi receipt found online It seems clear that negotiations are over and there's no next step in the offing. Describing the NHS as 'outrageous' and the Government as 'unconscionable' is as clear an indication to that as anybody need. Vertex's Trumpian assertion that they offered 'the best offer in the world' smacks of exasperation on their part as well as shifts the blame. I find it baffling that the Vertex people who have agreed the wording of this press release - presumably this would have gone right to the top - close with a plea to Government to intervene. Guys, a little secret for you, you have been...

We are in full fundraising mode , preparing for our walking challenge to raise money for the CF Trust.   This process has required me to expose myself - to tell a wider circle of people about Eloise's CF to enable us raise as much money as possible.   Why can it be difficult to tell people, to ask for donations and show the reality of Eloise's life? Three of The Striding Sisters. Our training is in full swing! When Eloise was a baby my attitude towards disclosing her condition changed daily! Some days I measured success by getting through the day and not mentioning CF. I had made it - got through the day without anyone knowing that CF was having a profound impact on our daily lives. Other days I blurted it out & told anyone who would listen. By telling people I was proving to myself that I was okay, coping and in a place where I could talk about it without getting upset. I hope I am more balanced now (although I do have good & not-so- good ...

E recently turned the big two! Along with the usual cake (a very cool Hey Duggee cake!), candles, helium balloons & laugher the background hum of cystic fibrosis was ever present. On the day E turned two her nebulised antibiotics changed from 1 million units per viral to 2 million.  Along with the physio and other meds it was a reminder that E never gets a day off from CF. When E was 14 months old she commenced nebulised antibiotics to fight off a pseudomona .  This was also the day she took her first steps - in the comfort of the hospital physio room! She has been on this additional antibiotic for nearly 11 months now. She needs to have a minimum of 6 months clear of growing any pseudomonas before we can stop administering the nebuliser... Eloise had a stupidly good second birthday! Blowing out candles is a good form of physio therapy for the lungs, right? It amazed me how much she understood it was her birthday and she loved every second of her sp...

The batle for access to Orkambi continues and we've sent our MP another letter asking him to add his name to a different letter which is going to be sent to Jeremy Hunt - the health minister. I've been indulging in a bit of social media campaigning relating to access to Orkambi with this bloke.   This is Steve Brine, MP for Winchester and under secretary of state for health. It was Mr Brine who was in the room listining to the access to Orkambi debate on behalf of Government. Paraphrasing his summing up he said: you wanted us to hear, we have heard you and we'll act - something like that anyway. I've been tagging @brineminister in a range of twitter messages relating to CF. I feel he needs to know that CF never takes a day off and I sort of hope that my tagging of him becomes a bit irritating to him for that reason. Whether he reads his own twitter or not I've no Idea, but you'd think his 'people' would flag something like this up to him. Mr B...