Volunteering at the Cystic Fibrosis Trust

As part of the Trust's commitment to volunteering, we've had the pleasure of welcoming two interns from the US to our office this Summer as part of a Study Abroad in London opportunity. To give a taste of what volunteering with us here in Aldgate, Leslie Drennan, one of these interns, gives an insight into her experience.

Spending a summer working in a city four thousand miles from everything I was familiar with was both intimidating and exciting at the start, but any fear I had was soon quelled by the brilliant and friendly staff at the Cystic Fibrosis Trust. Coming in, I knew I would be working with the Information and Support team, but wasn’t quite sure what that would entail.

As soon as I arrived, I was welcomed by my supervisor, James Atkins, and spent the next few days getting to know my way around the office and the other people I would be working with for the next seven weeks. The Information and Support team puts together packets of information about cystic fibrosis (CF) for schools, children and parents, as well as monitoring calls coming into the helpline so they can give appropriate advice to those who call in. I was eager to help in any way possible, so they immediately involved me in every project they were working on. I did everything from researching methods to better serve the CF community to helping fill out travel insurance forms.

Along the way, I learned a great deal about CF and how it impacts not only those who have it, but every person that comes into contact with it. The effects are not felt equally by every person, as there are almost two thousand forms of the condition. Life can be quite difficult for those dealing with lung or pancreatic issues. However, I think the most essential thing I learned was that a person’s attitude towards CF makes all the difference, both psychologically and physically. I was given an entirely new perspective on my own health because of how much I take for granted on a daily basis.

Jacqueline Ali, Head of Information and Support, set up two CF clinic visits for me after learning about my interest in becoming a psychologist. This rounded out my experience at the Trust as I got to see first-hand at how clinicians and patients must work closely with one another in order to best combat CF. Every person I worked with went out of their way to make me feel welcome and useful.

Overall, my experience at the Trust is one that I will always remember. Whether learning about best practice in the workplace or how to integrate myself into another culture, I’ve gained an immense amount from my placement. In fact, I’ve enjoyed my role in this charity so much that I am now considering going into non-profit work once I graduate from university. I feel very fortunate to have had the opportunity to work for and with such driven, intelligent and pleasant people. My time at the Cystic Fibrosis Trust has easily been the best part of coming to London.

Want to give some of your time to the fight against cystic fibrosis? Find out more about volunteering with us at cysticfibrosis.org.uk/volunteer

Charlotte's Story - Facing Up to the Challenge of Adult Disability Benefit

 Personal Independence Payment (PIP) is the new adult disability benefit, replacing Disability Living Allowance (DLA) for people aged 16 to 64 with disabilities or long-term health conditions.

Change can be a good thing but there’s always a risk of it going wrong – sometimes very wrong.

It’s a case of the latter that has motivated our Policy Manager Nick Medhurst  to write this blog post.

I’ll lay out my stall: I think PIP will work for some people with cystic fibrosis. It’s made up of two parts – one part provides financial support to help you with daily activities, and the other provides financial support with ‘mobility’ issues. So, in a sense, that is two potential support packages for ‘doing stuff’ and ‘getting around’.

I believe that if the letter of the law is applied, the majority of people with cystic fibrosis will get the support they deserve to help them with their daily activities.

I also believe that despite the myriad challenges that people with cystic fibrosis face in getting around – from breathlessness, fatigue, coughing fits and pain, to fear of infection and anxiety – that many people who desperately need that support won’t have any chance to get the support they deserve, because of another pathetic piece of miserly, ill-judged policy making.

So, theoretically, if you don’t need support to get around but some financial help to overcome daily barriers to leading a normal life will go a long way, then PIP will work for you.

However, theory is only theory. Many months ago, I was contacted by a mother in distress. Her daughter, Charlotte, was unwell and struggling. She was turning 16 and was told she must apply for PIP, as she was no longer eligible for children’s DLA or adult DLA given the change to PIP.

This dedicated, caring, loving mother was caught up in a bureaucratic nightmare of bad information, blind-alleys and complex processes. She and her daughter embarked on the PIP application without any support or quality advice and information. The government’s top-down, blunderbuss approach and insistence on farming out stages of the process to private companies meant that Charlotte and her mother had a million and one different points of contact but nobody could give them straight answers and they continued to forge ahead in the dark, as part of an experimental system.

Charlotte’s mother rang me. I did what I could to explain the theory of how the system should work and to help her make sense of the jumble of loose ends that was, laughably, referred to as an application ‘pathway’. We discussed options, plans-of-action, tips and strategies.

But I couldn’t help Charlotte how I would have wanted to. In the end, the system failed her. And then kicked her whilst she was down.

Charlotte, unwell and upset, was made to beg for the meagre support she had been denied – for both parts of the benefit – in front of a judge, at a tribunal.

She was denied again.

The complexities and bureaucracy of the system they entered is enough to numb the mind and becalm the drive and ambition of even the most resourceful. To subject Charlotte and her mother to such miserable and intimidating treatment, at such a difficult time, is heartless enough to be labelled cruel. What on earth did the endless stream of nameless officials think they were achieving?

It is my view that the individuals involved should feel ashamed as professionals and annoyed as taxpayers. What an utter waste of everyone’s time, money and energies.

Not everyone with cystic fibrosis will need welfare support but the reality is that most do and for the vast majority it genuinely is a lifeline, in the sense that it breaks down some of those financial and logistical barriers and facilitates people going out and living their lives and achieving their ambitions.

The Cystic Fibrosis Trust is utterly committed to ensuring that people with cystic fibrosis get the support they deserve on time, at the right time, first time. That should appeal to everyone, from the government, to the families and individuals that we exist for.

We are working directly with an equally committed group of specialist cystic fibrosis social workers from across the UK to help shape and design our work and ensure that our advice and action is as impactful and effective as possible.

Our Support Services team provide a helpline to share advice and information on a wide-range of welfare topics and handle many other issues and questions besides.

Our Policy and Public Affairs teams work to understand these challenges thoroughly and ensure that those who can make a difference, like politicians, know what a positive change is.

Our Media team will continue to speak out on behalf of everyone with cystic fibrosis to help everyone understand this complex and cruel condition.

Charlotte is heading to university this September. She will be realising a life-long ambition and embracing one of life’s best opportunities – to learn and excel and better herself.

What an abject shame that the government has missed the opportunity to support Charlotte to defy those challenges and meet the obstacles that cystic fibrosis throws her way head on. She’ll do it on her own, with the support of her loving family.

I wouldn’t call that the Big Society. Far from it. That’s our community and we’ll fight to the last.

 

If you want more information about cystic fibrosis and Personal Independence Payment (PIP), please read our guidance.

Have you applied for PIP? Tell us about your experience by emailing campaigns@cysticfibrosis.org.uk

 

 

'One Born Every Minute' - CF and Pregnancy

Channel 4's 'One Born Every Minute' tonight (9pm) features Rhiannon Dunn, a mother with CF having her third child. As people with CF live longer, having a family becomes more of a possibility, but it doesn't take away from the challenges that CF brings on top of parenting a child, let alone three!

Rhiannon tells us in her own words how she manages the balance of CF and parenthood.

The hours, days and weeks simply bleed into one another since becoming a mother to three beautiful, strong-willed and noisy children, but that's what I always dreamed of so I couldn't possibly complain… well maybe once in a while, when I realise I'm drowning but not from my cystic fibrosis!

I was born in 1988 and was diagnosed with cystic fibrosis (double DF508) through a sweat test at eight months’ old due to “failure to thrive”. It was good to get the diagnosis as my mum couldn't take being called an over-protective mother by doctors and now I have learned myself that a mother’s intuition is real.

As a child I had both hospital admission and home IV therapy and I always had access to good nutrition even though I struggled gaining weight. Then I hit my teens, at 15 I met my husband and we have been childhood sweethearts ever since. We have been together 11 years this year and I'm lucky to have him as he is supportive and there right by my side through CF and the journey that is motherhood.

Being a mother to three young children (and don't forget the three cats!) and having cystic fibrosis along with diabetes is tough; I won't lie or sugar coat anything. The overwhelming loving motherly instinct I always feel is always tainted by guilt of deciding to bring a child into a world where I know I may not be here to help see and nuture them right through, due to the life expectancy of a CF patient, but then I have never been one to let CF get in the way.

I have always been bold, confident and wanting to prove people wrong, so we took the marriage and parenthood route & never looked back.

Our daily routines are more time consuming, demanding and nonstop, more than ever on top of my medical needs, and it takes good, sound management to juggle everything so it's home IVs through a portacath. Online groceries delivered to our front door and plenty of take away dinners have become the norm as something has to give, right?

Our home? How do I keep that clean? I don't: I had to admit defeat and bring in extra help and hire a cleaner otherwise I would be 10 feet under! I'm on the go 16 hours a day, juggling CF and three young children, the novelty of school runs has well and truly worn off, I can tell you that for a fact.

Believe when I say babies are easy but school-age children and driving across the city for extra-curricular activities, play dates and not to mention their own appointments when you have a child with their own disability, are things I didn't plan for. But I'm thankful all the same, I have the opportunity and privilege to have this life; I'm a very luck lady indeed.

We decided to agree to be filmed for Channel 4’s ‘One Born Every Minute’ series seven to raise awareness of CF, empower and offer reassurance to women who have the same genetic illness as me and to get that out to the public, so to do that, what better way to get people’s attention than to get naked on TV!

So I hope you all enjoy watching me losing my dignity on national TV because I know we had a fantastic experience recording it and would do it all over again.

Ps not really - my husband’s booked in for a vasectomy for two weeks’ time, ha! Three babies is more than enough!

Learn more about issues around cystic fibrosis and pregnancy, including fertility.