If your child or young person has complex care needs, you may be given complex care at home to help support you and your family to manage their health needs and give you some respite.
This can be a really difficult time, especially if you are new to receiving care at home. The idea of people coming into your home can feel invasive and daunting. You’re not alone. It’s completely normal to feel nervous about this at first, and it can take some time to get used to this change.
To help, we’ve spoken to two parents of children and young people we support who felt the same as you. During a two-part blog series, you’ll hear from Asma in part one and Helen in part two. You’ll learn more about their complex care stories and find out their top tips to receiving complex care at home to help you feel more at ease with the process.
Meet Huda’s mum Asma!
“Hi! I’m Asma Bukhari, and my daughter’s name is Huda Bukhari. She has Rett syndrome and is diagnosed with Lennox-Gastaut which is very complex epilepsy. We have been using Children’s Complex Care since 2015.
It was really daunting at first, knowing somebody was going to come in and look after Huda in the night. Before that, we’d had no support, it was just me and Huda’s dad supporting her.
But we kept an open mind and the whole process was very good. People made us feel at ease right from the very beginning. From the Clinical Nurse Manager that explained how it was all going to work, to introducing the carers to Huda; the team had a soft approach.
There was no rush. It was gentle and they eased us into it. We started off having carers in for a couple of hours in the night. We got to show them where they would be and what should be done.
During that initial period, we would wake up in the night to keep an eye on them because we were anxious. But now, we sleep straight through and we can’t live without them.
They have become indispensable.”
Top Tip 1 – Honest Communication
Something that has worked for me, is to have free flowing communication with the carers, with the staff and with the people who are making changes on the rota.
If you want things in a certain way, you must speak up and clearly explain it to them. If you find somebody is not up to your standard or you don’t feel confident or trust them enough, then it’s alright for you to request they aren’t sent again.
But it can take time. Initially, I didn’t have the courage to say how I felt. So, I wouldn’t say anything, and it would just bug me. It’s only over time I’ve learnt to be more confident and communicate my feelings.
Because unless you do that, no one will know what you’re feeling. So, put it into words. Tell them your concerns and how you want things to be done. Only then will they know.
The team are professionals and are really understanding so won’t be offended if you tell them your thoughts. They’ll take it on board and that’s how things start to work more smoothly.
Top Tip 2 – Have a small staff team
I would say it’s worth having a small staff team providing support, rather than just one person. Because if somebody’s unwell and they can’t make it, you have somebody else who knows your loved one.
This makes sure there’s good cover when it comes to your support, with people that know your child well, are trained around their needs and avoids you being left without the support you need.
Top Tip 3 – Build good relationships with your carers
I think it’s important to have a good relationship with the people looking after your child. You need to make them feel welcome and comfortable in your house. I feel once they are comfortable, they can look after your child better. It’s not doing anything fancy, it’s just treating them right.
At the same time, remain quite professional with them. Because you are at home, it’s easy to be more personal when chatting, and boundaries can be crossed.
It is finding the right balance. We set clear areas of the where they can be. So, if they come and Huda’s with the family, they go up to Huda’s room and do their own thing until we are ready for them.
That way, we are comfortable knowing they are there if we need them, but they aren’t intruding our space. And I think that boundary has helped us a lot in the past six years.
Top Tip 4 – Take time for you
Initially it’s hard to let go of being the sole care provider for your child and you want to know what’s going on while the carer is there. But from my own personal experience, once you have a carer, shown them how you want things done and trust is built, take the step back.
Utilise the time for your own wellbeing, whatever you need to do. In our case, that’s for sleep. It’s only after I started getting help from the carers that I realised how important a good night’s sleep was. Now I can wake up happy and refreshed and can look after my child well during the day.
This is equally important, as much as it is important for your child to receive the care. So, if you can, please take that time for you because, it’s well worth it and makes such a difference.
Top Tip 5 – Be patient
My final top tip is to be patient. When the carers come in the first few days, it can feel overwhelming, but then you start to get used to it. Give them a chance to settle with your child and see how they cope. Then you will start to build trust.
Once you trust them with your child, it’ll be like they’ve always been part of your life. Having carers in your home is a gradual process. It’s not one day and everything’s perfect. It’s a process. And it takes time.
Supporting you with care at home
Asma and her daughter Huda are supported by our Children’s Complex Care team. With our extensive experience, we can guide you and your family through the care at home process at a pace that works for you.