Nigel’s Story
Background:
Nigel is married to Hazel, together they have a 4 year old daughter, Rachael. Nigel was diagnosed with Friedrich’s Ataxia about five years ago. It’s a condition that affects Nigel’s balance, mobility and speech. He went to his doctor after he felt that he was starting to slur his speech. While Nigel has slowly been coming to terms with his prognosis he still finds himself becoming incredibly frustrated by his condition.
Diagnosis:
After realising there was something wrong Nigel sought a consultation with his GP who initially thought he may have another condition and so referred him to a specialist where he was tested.
“My GP referred me to a specialist, thinking that I had multiple sclerosis. Following a blood test it was established that I actually had what they call late onset Friedrich’s Ataxia. About five years after diagnosis you’re [usually] confined to a wheelchair.” The disease is rare but if like Nigel you’re diagnosed relatively early then there are things you can do to slow the progression disease like “going to the gym and seeing a physiotherapist.”
Clinical Trial Recruitment:
There are a few routes to becoming involved in a clinical trial but perhaps the most traditional way is to be referred by your healthcare provider.
“I was originally approached by my consultant who was trying to put together a group for the clinical trial. The consultant explained what the drug was, the impact of it and answered [all] of my questions [and] I was given the opportunity to go away and research it”
“I researched what the trial was doing, what it was [I would be] testing and the obvious side effects, if any”.
Clinical Trial Experience & Day to Day Commitment:
As with many clinical trials it is possible that you could be given a placebo or dummy pill. A double blind trial is where neither the researchers nor nurses know what they are administering and the patients aren’t aware of the treatment they are receiving. This type of trial is designed to avoid a bias in the overall results and conclusion.
“When I started the trial we did a one year double blind trial, then after a year they requested if we would carry on with the trial but instead of being a double blind we would be made aware of the medication we’re receiving.”
“The effect of the medication appears to give me more energy during the day so I’m able to do more things than I would be able to do if I wasn’t taking the medication.”
Nigel picks up on the day to day commitment, “I’m taking a dose of medicine three times a day after meals. Whenever you change your medication you are reviewed within a month, this takes place with the clinician and is to ensure there are no side effects. Then you are regularly re-assessed every two or three months.”
How long will I be on the trial:
The length of any clinical trial will vary, it can depend on several things for example if a medication has shown to cause adverse side effects then the trial may be brought to a halt early and conversely if a drug has reached its target or ‘endpoint’ then again the trial may be stopped earlier.
“We’re on a one year trial, I’m taking the medication while they apply for the licence in the UK, assuming it achieves all the aims of the medication.”
In Nigel’s Words:
“I am strongly of the opinion that clinical trials have to be undertaken to help people, while it may not help you it will help people going forward.”
“If you’re considering being involved in a clinical trial have a look at what you think the medication [is] and what you believe your objectives are.