A first-of-its-kind initiative will see new and expectant mothers given vital new levels of support from the point their baby is diagnosed with a neurological condition, genetic illness or brain injury.
Two specialist outreach workers from The Brain Charity are now based at Liverpool Women’s NHS Foundation Trust – the only specialist Trust of its kind in the country – and offer practical and emotional support to new parents and families who need to come to terms with a diagnosis for their child.
Maria Wilson and Sue Blackburn will work alongside mothers and wider families from the point of diagnosis, whether that be pre- or post-birth, and help them to adapt to new parenthood with the added challenges their child’s condition or illness may bring.
The support also extends to parents who themselves live with a neurological illness or brain injury, and may need additional help in looking after their new arrival.
The project is the first in the UK to deliver support for a range of neurological conditions to pregnant ladies and new mothers in hospital, and builds further on The Brain Charity’s inpatient provision following the success of its outreach workers being based in The Walton Centre NHS Foundation Trust.
“We support mothers and parents with whatever their situation is; sometimes they already know their child will be born with a neurological or genetic condition, or sometimes the diagnosis won’t be known until after birth, or the baby might sustain a brain injury,” says Maria.
“We know there are gaps in having the early-stage support there as soon as parents get the diagnosis, and through this project, we’re helping to fill those.
“Liverpool Women’s have been brilliant to work with in getting this started, and it adds to the overall care they can give new parents through being able to direct us to those who need our specialist support.”
Through the project, Maria and Sue will deliver support in a wide range of ways, whether that is providing a listening ear, assisting with access to benefits and welfare, or signposting to organisations who can help, including the many additional services The Brain Charity offers, such as advocacy, counselling and benefits support.
“It’s important we work very closely with the multi-disciplinary team (MDT) to ensure families are supported in every way possible, it’s very holistic,” says Maria.
“I always start by asking a family: ‘What do you need?’ We want to help fill their unmet needs and make their lives easier. They are thrown into this situation and we want to do all we can to help them adapt.
“It could be something as simple as making phone calls to loved ones, or advising them on some financial options. For example, do they have critical illness cover on their mortgage or any insurance? Can they access any benevolent funds? What benefits are they entitled to?
“We’ll look at what services we can link them in to and who can give them the support they need at that time.
“Equally, you can never underestimate the importance of emotional support. Often, just being there with a listening ear, giving them the time to open up and chat, is really vital. It can feel like the rug has been pulled from under them, so sometimes just talking can be a really important part of the process.
“This can be a very difficult and traumatic time for a family, which can start with the process of going through genetic tests before birth, or in having to deal with the enormity of an unexpected diagnosis afterwards – but we’ll do everything we can to get them through.”
Maria and Sue continue to work with families even post-discharge from Liverpool Women’s, whether that is to another hospital or in their return home.
“For a lot of families, it’s at the point they return home to the reality that their family has changed, and the support can often be needed then more than ever,” says Maria.
“After being in a clinical setting and then going home, it can be a very scary time, but we’ll be there to make sure statutory services are working as they should be and ensure the early help is in place for them.
“The Brain Charity’s support continues long after discharge, and we can signpost to our other services to make sure we’re helping the whole family – whether it’s one of the parents who wants to re-train to do a different job as they are having to adapt through their circumstances, or if Grandma wants to come along to one of our support groups to meet others in her position, we can make sure they’re supported at every stage.”
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