Three marathons, three cities, three countries – one cause

This weekend, runners from all over the UK will descend on Greenwich for the Virgin Money London Marathon, running for Team CF to raise money for the fight to beat cystic fibrosis. Among those lining up will be Kyle Parsad, completing a trilogy of marathons in just five weeks, for the Cystic Fibrosis Trust.

Rome was beautiful, I loved the city when I went last year and that's what made me sign up to the marathon there for this year. I didn't quite realise it would be so difficult though, and the cobbled streets really took it out on my body! Having said that, I got through it and the first one out of three was done in a time of 4hr 08mins.

After going through the pain and how hard Rome was, Paris was playing on my mind and there was a part of me that was worried that it would be as tough. But it was a stunning route, and the organisation was second to none. I enjoyed every minute of it... up until the last few kilometres when it started to hurt, but the support from the crowds kept me going and the atmosphere makes you want to finish. I loved it, and would definitely do Paris again in a heartbeat. This one I finished in a time of 3hrs 47mins... a new PB!

Finally, at the time of writing this I will be 11 days away from the final one of my three marathon challenges... London! I finished this in 2011 and again it was the best thing, but the hardest thing I have ever done in my life. However I am more prepared, mentally and physically, for this one then I was previously.

The other two marathons have trained my mind and body to be prepared to tackle the streets of my home country! It seems a long time ago that I started all this training and a while ago that I did Rome but in the space of five weeks I will have completed my trilogy of marathons, all for such a worthy cause... cystic fibrosis. I'm very much looking forward to pounding the streets and making this my marathon, my race and the one that I will remember forever! I am someone who is lucky enough to be able to do this, I am physically healthy and CAN run...therefore it is my responsibility as someone who CAN to help those who CAN'T!

Sponsor Kyle at www.virginmoneygiving.com/kyleparsad.

CF in Scotland: SCooP Update

Fresh from speaking at the launch for the Sixty Five Roses Club Scotland, Dr Emma France provides an update on SCooP, the project she is leading to help parents of young children with cystic fibrosis meet their child’s physiotherapy needs. The project is part-funded by the Cystic Fibrosis Trust.

I lead the SCooP (Supporting Children’s Physiotherapy for cystic fibrosis) project, an innovative and exciting project involving a team of researchers from across Scotland, England, and even Australia. Supporters of the Cystic Fibrosis Trust helped to name the project byvoting for their favourite title in an online poll. We have been working with 20 families over the past eight months to create a short film for families who have young children with cystic fibrosis from 0 to 8 years old. The film will encourage and support other families to stick to their child’s chest physiotherapy routine.

Home chest physiotherapy is a major part of the daily treatment to clear the lungs and airways of the thick mucus which can lead to infection. Parents, carers and their young children with cystic fibrosis find it difficult to stick to their home physiotherapy routine for a wide range of reasons. But lots of families have come up with their own ways around the problems they have keeping to their child’s physiotherapy routine. For example, parents told us they visualised the build-up and clearance of mucus to motivate themselves. We are drawing on the expertise and experiences of families to develop the film.

We have just finished filming with real families living in Scotland who have a child or children with cystic fibrosis. The film will show the families telling their stories about having a child with CF, doing home chest physiotherapy with them, and showing us some of the solutions that they have found to help them do physiotherapy.

Now we need 20 families from across the UK with children aged between 0–8 with cystic fibrosis to try out the film. See: http://www.stir.ac.uk/scoop/ for more details.

The 20-month SCooP project started in May 2014 and is funded by the Cystic Fibrosis Trust and the Chief Scientist Office of the Scottish Government. Emma France is based at the NMAHP Research Unit, University of Stirling, Scotland.

Why We Provide Financial Support

Trust Chief Executive Ed Owen talks about why the Trust offers grants to help those with cysticfibrosis most in need.

I am sometimes asked by supporters why the Trust chooses to provide financial grants to people with cystic fibrosis and their families when this diverts money from vital research and care.

It’s an important question, especially from those whose efforts help raise the funds we rely on to carry out our vital work – and one that I am pleased to address as we revamp the way we issue health and wellbeing grants.

I am very clear that supporting those with cystic fibrosis in most need with appropriate, focused help is the right thing for us to do. Whether it is the young person starting out on their own for the first time who needs help to buy a fridge essential for medication, or support for a hard-pressed family to purchase a trampoline to keep their child fit and active, we can make a real and positive difference to people’s lives in this way.

I am also proud that the Trust can provide opportunities to people with cystic fibrosis living on low incomes to take a holiday break which they otherwise could not afford – and to provide funeral grants of £750 to the families of those who have lost their lives to this cruel condition.

We cannot and do not, however, run a benefits service to provide ongoing support for people out of work or unable to work. This is the job of government and the Trust campaigns to ensure all people with cystic fibrosis get appropriate support.

We also do not provide support for clinical equipment such as fast nebulisers. These should be provided by the NHS and the Trust must never become a means by which health providers avoid obligations they have to provide appropriate healthcare to people with cystic fibrosis.

And many particular services required by those affected by cystic fibrosis are best provided by other organisations like the Citizens Advice Bureau. So, through our advice helpline and website, we point families and individuals in their direction.

It is vital that the financial support we do provide is focused on those in most need – and so we have changed the application system to put a particular emphasis on those on low incomes. It is also important that as many people as possible can access the scheme. So we are working closely with CF clinics to promote the grants system to those who might benefit.

Finally, it is essential that the decision on whether a grant is awarded or not is taken fairly and clearly.  So a new grants panel, chaired by Peter Sharp, a former trustee of the Cystic Fibrosis Trust and someone living with cystic fibrosis himself, and including experts in CF and welfare, assesses all health and wellbeing applications.

We are currently spending about 1.5% of the Trust’s income on financial support for people with cystic fibrosis – and it represents about a 20th of our research budget.

But, at a time of welfare cuts and austerity, the system provides an important support lifeline for people with cystic fibrosis and their families who struggle to get by. I am clear that this is the right thing for us to do, and I am hugely grateful for the work of all our supporters that enable us to fund it.

Health & Wellbeing Grants: The Social Worker Perspective

Today the Trust’s grants panel will consider applications for the second round of health and wellbeing grants. In this blog, Anne Calvert and Margaret McCafferty, two specialist CF social workers from Belfast, discuss some of the financial issues that people living with cystic fibrosis can face, and the importance of the Trust’s grants in supporting people during different stages in their lives.

We are from the regional adult CF centre in Belfast, covering the whole of Northern Ireland.  Individuals with CF travel long distances to attend outpatient clinics. Many are not entitled to help via the benefit system and it is costly having to travel so frequently. When someone comes into hospital they are usually admitted for a two-week period and contact with family and friends is extremely important during this time. Families not only incur the additional cost of travelling to and from hospital, but they are also spending money on meals, trying to encourage the patient to eat and supplementing hospital food. 

The first home grant has been extremely helpful to those wishing to set up independently. The availability of small emergency grants is fantastic when, for example, the washing machine breaks down! 

We have also found these grants very helpful when someone needs a one-off payment to help with unexpected costs. Many people attending our unit are parents themselves now. When they have to come into hospital they are extremely worried about the increased cost of child care. We have successfully applied for financial help to meet these costs, which goes a long way to help reduce some of the understandable anxieties for people coming into hospital. We also recently applied for a one-off grant to support someone paying for a professional cleaning service. They were going through a difficult time and felt overwhelmed by the situation. They really appreciated this help and felt better able to “keep on top “of things.

Looking forward to a holiday gives all of us a lift! The holiday grants are very important, especially as insurance costs can be very expensive. It is extremely important that people can go on holiday with peace of mind, knowing they can access medical care if they need to.

When health deteriorates the home care grant has been of significant benefit, especially when someone wants to spend as much time at home as possible. It is important they are not worried about the increased costs such as heating during this difficult time.

Individuals in Northern Ireland go to Newcastle, England, for assessment for transplantation. This is an expensive process for them and the family member who accompanies them. The grant for the assessment period has been very helpful. 

Also, for those families where they have lost someone with CF, they are really appreciative of the £750 grant to help towards funeral costs.  

Our Financial Support for the CF Community

As the Cystic Fibrosis Trust’s grants panel gets ready to consider applications for the second round of health and wellbeing grants, Support Service Manager Becky Kilgariff discusses why the Trust offers grants, and the kinds of financial assistance available.

Sometimes we are asked: “Why does the Cystic Fibrosis Trust offer grants to people and families affected by CF?” The short answer is: “Because they are needed”. Now, in an era of austerity cuts and benefit reform, we know they are needed more than ever. Our Policy and Public Affairs teams continue to campaign for the rights of people affected by CF and their carers and families, but in the current climate, our grants programme is there to help ease the financial burden.

We offer a variety of different grants to meet the needs of the CF community.

Our emergency grants can help at short notice – they are usually paid within a week of the application being received. We offer funeral grants of £750 following the death of someone with CF, hopefully easing some of the worry for families at a very difficult time. We can provide a grant of £250 for those undergoing a transplant or transplant assessment, which can bring unexpected costs. This could perhaps be travel costs for getting to the transplant centre, or for a family member to stay nearby, and these can be applied for up to two months after the costs have been incurred.

We also offer small emergency grants of up to £150 for other unexpected costs or emergencies. This can include urgent household repairs or cleaning to remove damp or mould, or replacement hypoallergenic bedding. We can also fund the first prescription pre-payment certificate for people unable to meet this cost, although we continue to campaign for prescription charges to be abolished for people with cystic fibrosis. Thanks to a generous gift from the Edward W Joseph Trust, we’re also able to offer grants of £450 to promote increased care in the home, rather than hospital, particularly at end of life. Our advice to anyone who needs an emergency grant is to contact our Helpline on 0300 373 1000 or helpline@cysticfibrosis.org.uk.

  

Our programme of health and wellbeing grants of up to £350 for goods or services is designed to help improve the health and quality of life of people with cystic fibrosis. These grants are considered by a panel every two months, and the next panel meeting takes place on Tuesday 13 April. In the past, the panel has awarded grants for gym fees and exercise equipment, fridge freezers and washing machines.

Finally, we also fund holidays for people with cystic fibrosis aged over 25s. From this week onwards, these are administered by the Cystic Fibrosis Holiday Fund – you can apply online or get in touch with them for an application form.

I hope that one day we won’t need to offer grants for people with cystic fibrosis – beating CF for good would mean an end to the financial pressures CF can bring. Until then we will continue to provide financial support where it is most needed through our grants.

Taking on the Atlantic

Later today teams from the universities of Oxford and Cambridge will do battle in the annual Boat Race, televised around the world. But away from the cameras, two groups of friends have been training hard for an even bigger challenge – the Talisker Whisky Atlantic Challenge – to raise money for the Cystic Fibrosis Trust. At 3,000 nautical miles, it’s the equivalent of 821 boat races, non-stop. James Timbs-Harrison from the All Beans No Monkeys team offers an update on the team’s progress.

The All Beans No Monkeys team stepped up our training to a new level over the Easter weekend, rowing our boat from Christchurch over to Cowes on the Isle of Wight.
It was a real challenge at this stage in our training with tough weather conditions, some reasonable sized waves and lots of wind. We tested out a lot of the equipment we will use on the Atlantic row and got to understand how the continuous rowing and resting regime will work on our bodies.
The weekend tied in nicely to other rowing events across the UK including the head of the river race, which the team have taken part in whilst at university and the upcoming Oxford/Cambridge boat race.

The weekend row created a lot of interest from members of the public and we have already had donations made just from people seeing the boat. The team hopes to raise £60,000 for our chosen charity, the Cystic Fibrosis Trust.

Find out more about and sponsor All Beans No Monkeys.

What to know what the challenge is like in numbers? Check out our infographic below:

Singing and Cystic Fibrosis

As Bianca Nicholas gears up to hit the stage for Eurovision 2015, composer Gareth Williams discusses Breath Cycle, a community singing project he developed at Scottish Opera to explore the impact of singing on cystic fibrosis. For Breath Cycle Gareth collaborated with the respiratory ward at Gartnavel Hospital in Glasgow, and worked with a number of people with cystic fibrosis.

“The exercise of singing is delightfull to Nature, & good to preserve the health of Man….
It doth strengthen all parts of the brest, & doth open the pipes.”

These are two of many reasons given by the English Renaissance composer William Byrd (born c.1539) as to why we should all sing. The idea that singing is beneficial to our health and wellbeing has clearly been around for a while, and Breath Cycle was the beginning of our journey to finding out more.

The findings from the pilot project were very encouraging and so over the next few years our plan is to open the Breath Cycle project up across several CF centres and take as many participants through the process of learning to sing as we can.

Before Breath Cycle, I had spent years working with opera singers. They are the professional athletes of singing and breathing – their voices can fill huge auditoriums, carry across full orchestras, and even shatter glass (so the story goes).

I see so many parallels in the daily routines of the opera singers I know and the participants with CF that I worked with. They both have daily rituals, exercises, regimes and routines to keep their instrument/their lungs in good working order. Opera singers work hard so that they can perform, and people with CF so that they can continue to live their lives on their own terms.

When fragility turns up on the opera stage, it is not as we think of it – Violetta at the end of La Traviata, or Mimi at the close of La Boheme, are both characters with chronic lung conditions who nevertheless seem to have the lung capacity to stun a fully grown elephant with a well-aimed top C.

Through Breath Cycle, I came to the conclusion that singing doesn’t have to be fireworks and dazzling displays of pitch-perfect spiralling to be engaging, meaningful and powerful, because it is, at its core, the act of breathing beautifully. 

Listening to the right singer with the right song moves us more than anything else can, because underneath the melodies and the counter-melodies, the harmonies and the rhythms, is a reminder to us all of what we are and what sustains us. Breath.

Here’s a song from Breath Cycle that David Brock and I created for five people with cystic fibrosis. It was recorded and assembled in a recording studio in Glasgow and sung beautifully by Breath Cycle participants. Of all the performances of my music I’ve witnessed, this is the one I am most proud of:  https://youtu.be/vPrZ-aF7Clk.

I might argue that there is only one thing more wondrous than the act of singing, and that is the act of singing together, and this is my aspiration – that people with CF can meet online and sing with one another. There are songs to be written, the technology exists – we just need to find the singers!

In the words of the composer William Byrd: “Since Singing is so good a thing, I wish all men would learn to sing.”

For information, visit www.breathcycle.com.

Making Travel Easier

Our Public Affairs team at the Trust are looking at how people with cystic fibrosis are affected when travelling and in particularly when getting travel insurance to go abroad. Lynsey Beswick, Public Affairs Officer for England, talks more about our work and how CF affects people like her. 

It’s Easter holidays and a time when many people will taken the opportunity to dig out their passport and air those beach towels in preparation for a holiday break. Most people take for granted the ease with which they jump on a plane and fly to far away shores.

However, for many people with cystic fibrosis, myself included, this is not always the case. Finding travel insurance can be a daunting task: insurance cover can be hard to find, the questions are not always relevant and quotes can be ridiculously expensive. 

Then there are the additional costs to consider. Most airlines require a fit to fly test and will charge for oxygen during flights. With numerous medications, travelling light is not an option and extra baggage is required incurring additional charges. 

The Cystic Fibrosis Trust is on a mission to reduce these barriers and make it easier for people with cystic fibrosis and their families to travel. 

We believe it is wrong that it can take hours to find appropriate travel insurance and people with cystic fibrosis often have no choice but premiums that cost hundreds of pounds. As a result many people are forced to travel without insurance or even stay at home. 

The Trust aims to ensure that the industry must have a better understanding of the condition. We have been working with travel insurance companies to help develop a new model of risk specifically for cystic fibrosis, but we need your help to make sure we get it right. 

 If you have cystic fibrosis or are a parent of a child with CF, we are keen to hear from you. Please help us by sharing your experience of travel insurance through our short online survey. 

Over the coming months we will also be challenging the airlines and improving the information we provide to make it easier for you to travel. We firmly believe that everyone deserves a holiday, especially people with cystic fibrosis and their families.

If you would like to be further involved with our travel campaign, as well as completing our survey you can also contact me directly at lynsey.beswick@cysticfibrosis.org.uk.