Your donation will make a difference:
Cystic Fibrosis Trust
Forum
  • Home
  • /
  • Home
  • /
  • News
  • /
  • Advice Space - when a little understanding goes a long way

Advice Space - when a little understanding goes a long way

In Northern Ireland a scheme co-funded by the Cystic Fibrosis Trust has trained advisors at Advice Space (formerly Citizens Advice Belfast) to offer specialist support to people living with cystic fibrosis. As part of CF Week 2019, Margaret, a specialist CF social worker from City Hospital, Belfast, and some of those who have benefitted from the service, like 28-year-old Kerry, share their experiences of navigating the health and benefits system with CF, and the impact this scheme has had.

Margaret McCafferty has been a CF social worker in City Hospital since 2013, and her colleague Anne has been working in CF for over 20 years. As changes to the benefit system loomed on the horizon, the pair were aware of just how difficult the new legislation could be for people with a complicated condition like CF to take on board.

Margaret remembers: “We were aware that welfare reform was coming into Northern Ireland and were concerned about the impact on our patients. Cystic fibrosis is a complex, hidden condition and it is easy to underestimate the challenges facing the individuals living with it. We thought it was essential that our benefit advisors had knowledge and understanding of the condition in order to advise our patients.

Responding to welfare reform

“Welfare Reform came into Northern Ireland much later than the rest of the UK. We were hearing from our colleagues in England how many patients were being turned down when migrating from Disability Living Allowance (DLA) to Personal Independence Payment (PIP). The delay around its implementation in NI gave us time to prepare, and to give Anne-Marie, Bill and Gareth at Advice Space information about how CF affects people. Gareth came on board in the last year because of the volume of PIP applications.”

“The problem is a lot of our patients have been living with the impact of CF throughout their lives, so they take for granted all the things they have to do,” says Margaret. “So we help list all the medications and all the ways that CF affects them that they may not think about and help them address and discuss delicate issues they may find uncomfortable.”

The Advice Space team receives referrals which include PIP, Employment Support Allowance, Housing Benefit, Tax Credits and Universal Credit, and have specific time slots allocated for people with CF to help them with this wide range of issues.

Michael, one of the users of the service, remembers the impact: “The advice was fantastic and enabled me to receive benefits I would never have known about”.

Another service user, Tina, recalls: “It was so refreshing to speak with Bill who has a wealth of knowledge and understands cystic fibrosis.”

Pat, who is waiting to hear about her application for PIP, says: “I don’t know if my application will be successful, but Gareth has given me the best chance!”  

£400,000 in benefits for the people who need them

In the first quarter of 2019 alone, the advisors have helped people with CF access some £39,000 in benefits they were entitled to claim. From the beginning of the project over £400,000 has been raised.

Kerry first turned to the service when she could no longer work. “It was able to change my life,” she says, “and I know that sounds so dramatic, but it has!”

Kerry began by speaking to Margaret and Anne about her working situation.

“My health has been up and down over the last few years, with the stress of work and getting married and everything. My husband went back to university, so we didn’t have the same amount of income. The team had advised potentially cutting down hours, but my work couldn’t accommodate my request, which I was really disappointed about.

I tend to get really stressed about things, which makes things worse. I thought, ‘Goodness, what am I going to do – I can’t leave my job and have no money.’ We had visions of my husband having to go out and work every night, and be at uni during the day. So that’s when I got in touch with Anne and Margaret.”

Anne went to see Kerry at her home, saving her over two hours of travel when her health was already at a low point.

"Being able to concentrate on my physio and my treatment is life-changing"

Kerry continues: “I’d had an admission to hospital and my doctor said I wasn’t ready to go back to work. The best-case scenario was that I would give up my work, but we wanted to know what was available if I did. So that’s when she put me in touch with Anne-Marie at Advice Space Belfast. She was AMAZING! I was able to talk away and she noted it all down and made it all easier. Because she knew the background to CF, I didn’t have to explain difficult terms, because she knew it.

“I’m a stresser and she took that all away – within 10 minutes I had all the information, and I was able to say: ‘this is it’. I hate not working, I’ve worked all my life, but being able to concentrate on my physio and my treatment is life-changing.

“Whenever I had been working, I would have been so tired on my days off I would have wasted the day laying in bed. Now I’ve got more time I can go to the gym whenever I need to… I feel like my life is more stable. Just to know we are going to be okay.

“My lung function was low 50s and it increased to the high 50s in a few weeks. I haven’t been back to clinic because I haven’t needed to. I wouldn’t have done that if it hadn’t been for Anne-Marie, Anne and Margaret. I’ve rang Anne-Marie a couple of more times, and she’s so lovely – she talks to you like a friend.”

The Trust’s scheme enables the CF social workers to work closely with the advisors and together, they can ensure nothing is overlooked.

Margaret says: “Having the advisors is such a support. We are able to say: ‘Don’t worry, we’ve got expert support here’. There’s a huge number of people who look at the PIP application form and think they have nothing to say. We take them to the advisor and they come out with the form completely filled in. We provide detailed supporting evidence at the time of application.”

For Kerry, the comfort of knowing she can get help when she needs it, from people who understand her situation, is vital: “Just being able to speak to someone straight away, and not spending three or four nights with it going round in my head. I’ve used the service many times just to sort a little question.”

Find out more about CF Week and the support the Trust offers, or make a donation to support more vital projects like this.

Explore CF Week

Related content

  • Back in time for CF Week: newborn screening campaign

    “It costs just £1.50 to test a baby for cystic fibrosis. So why isn’t every baby tested?” In April 1996, the Trust launched a campaign to get...

  • Great strides gets greater!

    The biggest edition yet of the annual Great Strides 65™ South event welcomed 363 walkers and 18 ultra runners (those crazy individuals who run...

  • Orkambi: one foot in the door

    With Orkambi rejected by NICE and negotiations deadlocked, community pressure saw December’s parliamentary debate persuade the Government to...

  • Wales joins Kalydeco club

    Following a continuing campaign by the Cystic Fibrosis Trust to provide people with CF with life-changing treatments, young children in Wales...