Lagan’s Foundation is a Bolton-based charity that provides home respite and support services across the North West for children and young people with Complex Health Needs.
Proper Good spoke to Emily Holt from the charity to find out more about the organisation’s mission and what inspired it.
Emily said: “Lagan’s Foundation was launched after our CEO Carren Bell felt so let down by the lack of professional support she experienced while caring for her seriously ill baby at home and was determined not to let it happen to others.”
Carren and her partner Barry discovered their daughter Lagan had heart defects at her 20-week pregnancy scan. They knew Lagan would probably face several open-heart surgeries and have Complex Health Needs. Carren went from being a “normal mum” with her first daughter to a 24-hour nurse and carer with her second. She felt isolated and alone with no support from the community team.
Sadly, Lagan died aged just four months on Monday 26th April 2011 and, within six months, the charity in her name was up and running, receiving its charity number in September 2011.
Fast forward 12 years, and Lagan’s Foundation – now with 28 members of staff and a team of volunteers – is the UK’s only charity that provides “Donated Care” to families with young children aged 0-5 with a Heart Defect or Feeding Issues.
“Grief pushed Carren to make sure other families with sick young children, especially those with heart defects or feeding issues, did not feel as alone when caring for them at home as she did.
“We are helping children who don’t have access to other forms of funding and are seeing an increasing need for our service, but not enough people know about us,” said Emily.
Clinical Professionals can refer their patients to Lagan’s but families can also self-refer.
Emily said: “We offer one two-hour session of respite a week to each family under our Donated Care Project. Our fully trained volunteers care for the child with either a Heart Defect or Feeding Issue in the family while the parent rests or recharges by spending quality time with their other children or even enjoying a nice long uninterrupted shower without worrying, something our CEO Carren really missed while a full-time carer for Lagan.
“It cost us £54 per week to provide those two hours of vital respite for each family. Every six months we sit down with the family and see if we’ve given them enough support for them to be able to flourish on their own or if they need us to stay for a little bit longer.
“Our volunteers help families of 0-5-year-olds with Heart Defects or Feeding Issues for free via ‘donated care’.
Lagan’s Foundation’s Donated Care Project is entirely funded through events, fundraising and grants.
“Working families are now able to use their government funded childcare support to help top up the supported hours they receive from Lagan’s Foundation if they need to.
“We also deliver commissioned care which is run by paid carers for children and young people between 0-19 years old, which is funded through the CCG, local authorities and can also be self-funded by the families.
“We specialise in caring for children with Heart Defects or Feeding Issues, but for our commissioned care it could be a brain injury, oxygen dependence, or something else that would mean they need that extra care.
“We have helped more than 50 families since we opened and are delighted to still be able to be supporting one of our first commissioned care children.”
Currently, Lagan’s are supporting 23 families but they are ambitious about growth and are looking to double its volunteer numbers from the local community and has links with Bolton, Salford and Manchester Met universities along with a connection to Alder Hey.
You can help families like Lagan’s not feel so alone in the world when things are tough:
To volunteer: There are many different roles, and no experience is needed. All training is given by the Foundation’s in-house Clinical Professionals and Carren.
To donate: Find out great ways to fundraise to help our Lagan’s Foundation children.
Follow Lagan’s Foundation on Facebook, Twitter, Instagram, and LinkedIn
If you are running a business that does social good, or a charity that also trades, the Proper Good programme would love to connect with you. You can find out what Proper Good is doing to support and platform social enterprise in Bolton here.
