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A chat with Cystic Fibrosis

Throughout 2018, the staff at National Friendly have been working hard to raise money for our nominated charity, the Cystic Fibrosis Trust. The Cystic Fibrosis Trust are the largest charity in the UK dedicated to transforming the lives of those with cystic fibrosis (CF) through investment into research, advising those with the condition and raising awareness throughout the country.

We are thrilled to announce that thanks to everyone’s help at National Friendly, we have raised over £10,000! To celebrate, we caught up with Jessica Barnard, Community Fundraiser for the South West, to find out about all the amazing work that the Cystic Fibrosis Trust do, and how these funds will help support this worthy cause.

What do you do on a day-to-day basis to support those with CF?

We’re really well known as a research charity, but another huge part of what we do is the day-to-day support.

In 2017 and 2018, we awarded £226,000 in grants to people with CF and their families. That’s everything from small emergency grants to transplant grants.

It’s a very expensive process going through a transplant in terms of travel to your hospital, and all the assessments that you have to go through. Therefore, if we can help to alleviate financial strain and stress, it’s an amazing way to try to reduce that kind of burden for people who are going through that.

We also have a health and wellbeing grant. For someone who has CF, their day-to-day life is exercise, so if they’re too ill to go to the gym, or if they have a new baby and they can’t go to the gym as much, one thing that we can do is give them money towards a rowing machine or a running machine so they can do that exercise at home. This helps to increase their lung function increases and they’re less likely to have long hospital stays.

We also awarded £7,700 in homecare grants for people who were really unwell or who were receiving end of life care, so they could stay at home and be with their family and be comfortable at that time, which is really important.

The last one is my favourite. We have a Welfare and Rights Advice Service to support people when they’re doing their applications for benefits. Last year we had around 400 people come through that portal, and we’ve helped them secure 1.6 million pounds.

It is money that they’re completely entitled to, but the process is quite long and complicated, so if we can help support them through that process, and let them know what they need to be doing, which alleviates so much stress.

What area will the funds be used in predominantly?

We’re always looking for ways to make sure that our portfolio is comprehensive as possible, because CF doesn’t just target one thing, it effects fertility, all the major organs, and there are mental health issues that are connected to CF.

It’s such a wide area, so we’re looking to try and target all of those areas so the people alive today are living the best life that they can, and aren’t limited by the condition.

Along with the research, once these medications are available it’s making sure that people actually have access to them, so that’s something that we work really hard on. There are CF centres all over the UK, but you can find that there will be a pocket where treatment is slightly different or they don’t have the same services, so we want to make sure that it’s standardized, and it’s not a postcode lottery in terms of what you’re being offered.

Overarching all of this is making sure people with CF live a life unlimited, so that’s really where all the funds are going to go, which is huge because we’re the only UK charity who are doing this. Any funds that we get from you, National Friendly, or from anyone are just massive for us.

Has there been an increase in people being diagnosed with CF?

That’s a really difficult thing to measure, unfortunately! One thing that the Trust did was the heel prick test; when a baby is born, they will have a heel prick test done to see if they have any genetic conditions. The heal prick test has been around for ages, but we fought to have CF included in that test.

1 in 25 people have the mutation, and if both those people have a baby, there’s a 1 in 4 chance that their baby will have CF. The UK has one of the largest populations of people living with CF in the world, so it was really important for us to make sure that this was something that was being screened from birth, because this is something which means you have to be on medication constantly.

If you lose a couple of years waiting for diagnoses, that could have huge ramifications in terms of your long term health. Now, a baby is diagnosed within two weeks. I would imagine once that happened diagnoses shot up, because before people were waiting years for diagnosis.

Can you tell me a little bit about the treatments CF?

At the moment most people are on nebulized antibiotics or antibiotics, and they’re doing physiotherapy and daily exercise.

Someone with CF might be taking 70 tablets a day, and the amount of time that it takes for them to take all of their medication will be about 2 hours every day.

At the moment, there’s a huge pipeline of drugs that are becoming available, which are precision medicines. Some work that the Trust did a few years ago was to make sure everyone with CF knows which genetic mutation they have, because there are over 2,000 different mutations.

This means that when these precision medicines become available, the NHS aren’t just handing out drugs regardless of whether they’re going to work or not, because it is so specific it means that the medication will be working on the mutation itself as opposed to fixing the symptoms.

What major milestones have you hit as a charity this year?

I think the biggest thing that’s happened recently is we have this thing called the Cambridge Innovation Hub, which is a partnership with the University of Cambridge; it will be centred in Cambridge but working with clinics around the UK, and they will be specifically looking at precision medicines, bacterial infection, chronic inflammation and lung repair.

It is lung repair that’s a big deal for a lot of people, because hopefully that will stop people getting to the point where they have to have a double lung transplant.

What’s the most exciting thing about working at the Cystic Fibrosis Trust?

I guess day-to-day for me, it is things like this, meeting incredible people. Because I’m not the interesting one; I just get to go and meet incredible people every single day. It’s so humbling, all the things that they have done, it’s so inspiring.

The thing that excites me constantly is how passionate our supporters are, we are so lucky in that. It is a life limiting condition, and everyone who is caring for someone with CF can see that, and so they’re so passionate, so engaged, so that’s exciting for me.

How have you found working with National Friendly?

Honestly amazing, you’ve all been so passionate and engaged and there’s so many different ways that you’ve been fundraising or spreading awareness that it’s just been wonderful to see, so thank you!

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