Patients and Families

 Patient Stories

 

January 2015 - Lisa Wilson mum to Isabell describes why they are glad to have taken part in the trial:

Isabell was diagnosed from birth and it was a shock to us as a family, as we had an older daughter who was fine. At first it was a lot to take in, but once we had met up with the CF team at Whiston hospital, slowly but surely with their help it became easier. Isabell has always been a strong willed little girl and takes everything in her stride, she never complains and just gets on with everything that is put on her.

She has always been very fit and healthy and we have never had any problems, so when at 3 and half we were told she had grown the Pseudomonas bug we were shocked. Our respiratory nurse had phoned and she had said that she had spoken with our consultant Dr Amegavie and he had said about the Torpedo trial and were we willing to go on it.

Our answer was really simple, from diagnosis we had always said if we could help in any way with research as long as it wasn't too invasive, as it would only benefit our daughter in the long run. We were a bit nervous at first when we heard about the IV arm of the trial as Isabell had never had one before, but once we sat down and talked about it we decided to go ahead. Isabell was amazing getting her long line she really surprised us on how brave she was and we were very proud of her. The trial went ok and we are still undergoing the nebulizer side of it which Isabell is coping really well with. We are really glad we took part as whatever happens now will benefit my daughter.

 

November 2014 - Lauren Wills mum to Brody describes why they decided to take part in the trial:

"Brody is my 3rd child and 7 months old now. He was diagnosed with CF following routine screening at 3 weeks old. It did come as a terrible shock as my older two children do not have the condition. Thankfully.. Brody has been well to date. He is an extremely happy, content baby full of smiles and giggles. He has recently started crawling so is regularly exploring every room in the house with great enthusiasm.

Brody was found to have Psuedomonus following a cough swab at a routine clinic appointment. Again, I was surprised to learn he had grown a bug as he is totally symptomless. It was following this diagnosis that I was asked to consider him taking part in the Torpedo trial.

In all honesty, it wasn't an easy decision. He is very young and I am still learning about his condition plus this would be our first experience of him needing additional treatment to his regular meds. Brody's Dad and I discussed it at length following really helpful conversations with Dr Smyth, Brody's Consultant Dr Chingali and Mandy, the research nurse. We jointly decided that Brody should take part knowing that we could change our minds at any point if we felt it necessary. The reason we chose to take part was quite simply because we believe the research is incredibly important, for Brody as well as all other CF sufferers. The research will hopefully provide a definitive answer to whether IV antibiotic treatment is superior or not to oral medication. Brody's participation as well as all of the other participants will directly impact on further treatment he may require. My son's health is our priority and I really feel this will go towards ensuring he received the most quality and effective treatment in future."

 

September 2012 - Tracey McKenna mum to Ross describes what happened when they took part in the trial:

“Ross started on the Torpedo Trial in November 2011 at 3 and a half years old after growing his first growth of Pseudomonas.

A week earlier I had gone to a CF Trust parents conference where Dr Smyth had been talking about the Torpedo trial, so when I got the call from Ross's Consult-ant to say Ross had grown Pseudomonas and asking if I was I interested in the trial I found it was a very easy decision to make.

The next day I was in Nottingham, suitcase and all. Ross was randomised to oral antibiotics plus a nebuliser and we were sent home.

There were no invasive procedures for Ross and he was totally happy at an unfamiliar hospital taking it all in his stride and enjoying all the attention.

Ross was very compliant with both the nebuliser and the oral antibiotics. He even learnt how to put the nebuliser together and and then sat himself down to watch TV to pass the time. For the first few months he seemed chesty and coughed a lot, including coughing up a lot of mucus but by the time the 3 months were up this had stopped.

The Torpedo trial nurse comes to Ross's hospital in Lincolnshire for the 3 monthly check ups which are done at the same time as Ross's normal CF clinics, so no extra hospital trips are required. “

“I believe the Torpedo trial has helped significantly with Ross overall health. Prior to the trial Ross coughed a lot and was constantly growing Staph and Haemophillus influenza and he was on an endless supply of extra antibiotics.

Since the trial ended the Pseudomonas has stayed away, and he hasn't grown anything on his cough swabs and he no longer has a cough. I am so pleased I said yes to the Torpedo trial!” Tracy McKenna, Mother of Ross McKenna, trial participant.

 

March 2012 - Adele Whitford mum to Niamh describes why they decided to take part in the trial:

Adele Whitford's four-year-old daughter Niamh has cystic fibrosis, and has ended up in hospital once a year for two weeks at a time needing intravenous antibiotics, making it difficult for the family to juggle caring for her 18-month old sister.

The Bristol based nurse said: "It puts a massive strain on us as a family to have Niamh in hospital for two weeks, whereas if she could be treated at home or while going back to school it would be much better. It's also a long time for her to be in hospital and the novelty wears off.

We decided to take part in the trial because we want to help improve the care for cystic fibrosis patients.”

 

 

 

March 2012 - Zoe Elliott mum to twins Alexander and Isobel describes why they felt it was important to take part in the trial:

Zoë and Steve Elliott have two-year-old twins Alexander and Isobel who were both diagnosed with CF shortly after they were born.

Zoë said: "When we were invited on to the trial I was initially really surprised that this research hadn't already been done. It would be reassuring to have some firm evidence to allow us to make a more informed choice and that’s why this research is long overdue."

 

 

Patient Newsletters

Download the February 2014 edition of the patient newsletter here

Download the June 2014 edition of the patient newsletter here

Download the January 2015 edition of the patient newsletter here

Download the July 2015 edition of the patient newsletter here

 

Progress with Recruitment