Home-Start Glasgow South and Home-Start Glasgow North and North Lanarkshire are embarking on an exciting new joint project with Home-Start UK and Cystic Fibrosis Trust. 

Home-Start UK and Cystic Fibrosis Trust will be working together to support the growing number of people with cystic fibrosis becoming parents who find themselves balancing their extensive CF treatment burden with care for their new-born. 

The pilot will take place across Glasgow.

Why is this work needed?

Cystic Fibrosis is a life-long, life limiting genetic condition affecting over 11,000 people in the United Kingdom, and over 900 in Scotland. It causes the lungs and digestive system to become clogged with mucus, making it hard to breathe and digest food. To stay healthy for longer, people with CF have a massive treatment burden.

Since the introduction of new medicines, which treat the underlying cause of CF a rising number of people with CF are becoming parents. In 2022 there were 173 babies born - this was nearly double the number from 2020.

But parents with CF face a number of challenges to keep themselves healthy, on top of trying to manage life with a baby. With the massive time-burden that their CF treatments create, some new parents have admitted to skipping parts of their treatment regime to spend time looking after their baby, something that can have serious implications for their physical health.

A focus group held by Cystic Fibrosis Trust found that parents with CF needed:

· Emotional and practical support with parenting;
·  Support from someone with a good level of understanding of the challenges, complications and treatment regimens for CF, but not necessarily an expert;
· Company when on Intravenous Therapy (IVs) at home, which restricts movement;
· Encouragement to find the joys in parenting;
· A consistent volunteer who visited regularly.

Becky Kilgariff, Head of Information, Support and Programmes at Cystic Fibrosis Trust, said: “New parents with CF often have additional support needs, balancing their own wellbeing with the needs of their child. With a recent baby-boom in parents with CF, it’s important that everyone has the emotional and practical support they need to stay as well as possible.

“We‘ve worked closely with Home-Start to create this partnership and are delighted that together we have secured funding to start the pilot in Glasgow, empowering expert volunteers with detailed knowledge about CF, so they can best support the needs of people with the condition.” 

Enter Home-Start

There is a network of 180 Home-Start’s across the UK who through their distinctive offer of volunteer-led home visiting support works to support families with young children who are facing difficulties. 

It is 50 years since the first Home-Start began supporting families in Leicester in 1973. Since then, Home-Starts have supported over 1.5 million babies and young children with volunteer led support for families.

Home-Start volunteers and staff in Home-Start Glasgow South and Home-Start Glasgow North and North Lanarkshire will receive specially developed training from Cystic Fibrosis Trust to enable them to meet the needs of parents with CF in an empathetic, knowledgeable way. This training is being designed to also help volunteers who are supporting families with a child with CF, or a family member with other significant health conditions or disabilities. 

A specific referral route has been created through CF clinics, to link parents with CF into their local Home-Start at the right time. Outcomes will be monitored and evaluated so that learning can be shared across the network and beyond and work is ongoing to secure funding for additional sites where CF clinics operate.

Hannah Morowa, Head of Support for Families, Home-Start UK, said: "It's a privilege to be partnering with Cystic Fibrosis Trust to provide needed, tailored support to parents with CF. Whilst a relatively small pilot, initially just in Glasgow, this is a really exciting piece of work that has the potential to develop much further, and we are looking forward to see what we learn." 

Laura's story

Laura gave birth to her son, Lucas in 2022 after starting Kaftrio. She said: “I started Kaftrio in 2020 and it changed the game – there's no doubt that Lucas, my son, wouldn't be here without it. I’ve seen a noticeable improvement in my health, and what it’s given me is a bit more stability. While that is beyond anything I could imagine, and ultimately has enabled me to become a mum, I also have nontuberculous mycobacteria (NTM). NTM is a notoriously difficult infection to treat, with long-lasting side effects and intense treatment regimes. I’ve been treating it for 5 years and was on long-term antibiotic treatment for two years before came off it to try and have a baby (me and my team worked really hard to get me to a point where this was a stable option). Thankfully, I was able to conceive relatively quickly and my pregnancy went without a hitch - apart from 9 months of sickness!

“I breastfed for 12 weeks and then changes in my chest prompted the decision to restart the treatment. I was admitted back in February for a 10-day course and with a 3-month-old baby at home, it was really tough. I finished the course at home, but juggling IVs 4 times a day alongside Lucas's routine was a real challenge. The maintenance treatment involves a nebuliser that Lucas cannot be exposed to, so I have to be very careful to take it when he is out of the room.”

Read more Home-Start news