It is a common misconception that respite simply ‘provides families with a break’. Whilst there is some truth to that statement, many parents who care for children with life-threatening or life-limiting illness will tell you they seldom get a break. However, those who have experienced respite care know that it’s more than just a break – it’s an invaluable resource!
Should you be in the fortunate position to have never needed respite care, whether that be for your child or any other person you care for, then it may be hard to understand exactly why respite care is so crucial. In this blog we will be discussing who benefits and how, from James Hopkins Trust’s point of view.
Firstly, imagine doing a job that you never thought you’d ever end up having to do. You do that job from the moment you wake up in the morning, to the moment you go to sleep at night, if your workload allows you to sleep! Also, there is no promise that when you do finally get to sleep you won’t be woken multiple times during the night. You received no handover or training for this job, you are well and truly winging it. No two days are the same, some may be easier than others, but regardless of how smoothly your day goes you still need to be prepared to work 24/7.
It comes as no surprise that things start to be neglected. You may not be able to spend as much time with your children, the fridge may become bare and washing is piling up. Despite being such a high pressured and demanding job you receive no pay for it, in fact, it costs you to do it! You need to pay for fuel and any supplies you may need. It costs you your social life and friendships since you have no time to nurture them. It costs you your mental health as you become burnt out yet have no other option but to carry on. You want to take a break, but there is no one else to do your job, or maybe there is but the role is so precious you find it hard to trust others with it. You really love this job but it is so hard. You didn’t ever imagine yourself having this job, this isn’t where you imagined you’d be!
Now imagine, this isn’t a job, this is your child and you are the parent/carer.
Due to the complex medical needs of the children that attend James Hopkins Trust for respite, Paediatric Nurses are required to ensure that each child has every need safely catered for. The clinical team at James Hopkins Trust have the skills and knowledge to manage a wide variety of medical conditions, administer necessary medications and provide specialised therapies. This gives the parents confidence that their child is in safe hands whilst they have some much needed respite. They can use this time to do things they cannot normally do or find difficult when they have their child with them. This can be getting a food shop, visiting friends, spending time with their other children or simply relaxing at home. The children can receive both daytime respite sessions as well as overnight stays which gives the parents a full 24hrs of respite.
Not only does respite provide the parents with some time to spend as they see fit, but it also benefits the children themselves. It gives them the chance to spend time with their peers, to play and make friendships that they may not otherwise have the opportunity to do. Respite facilities like ours are well equipped and accessible and can therefore safely assist those with a multitude of disabilities, illnesses and additional needs. It is not uncommon for these children and families to feel isolated, which is why social respite settings like James Hopkins Trust play a crucial role. They offer opportunities for social interaction and can make all the difference in their lives. At James Hopkins Trust we adopt a person-centred approach to our care and are able to adapt activities to suit the specific needs of the child, often using specialist equipment. This may be adapted kitchen equipment so the child can take part in baking, a sensory room to help them relax and explore and even specialist baths they can enjoy during their stay. Often, the children and their families do not have access to these specialist items outside of James Hopkins Trust therefore we are providing them with the opportunities to experience things they may not otherwise be able to.
Of course, sometimes the child with complex medical needs isn’t the only child in the family. Having somewhere where the parents feel at ease leaving their child for respite allows them to spend some quality time with their other children. During this time they may be able to participate in an activity that they wouldn’t otherwise be able to access with their sibling or enjoy some quality time together at home. It’s important to note that the siblings of children who have life-limiting or life threatening conditions are considered young carers. They take on a lot, often at a young age, to help their parents to care for their sibling and they too need recognition and time to themselves.
Often families report that the social aspect of respite for them is very important. Speaking with our staff, meeting other families in similar situations and having access to a wealth of experience and knowledge is invaluable. We are often referred to as one big family and pride ourselves on the fact that not only do we support our children but that the parents and families are supported too and in so many ways.
Caring for a disabled and/or medically complex child is extremely rewarding. It goes without saying that without access to respite, many parents would struggle. James Hopkins Trust are proud to be able to support families across Gloucestershire by providing our vital respite services.
Respite is a lifeline – an essential lifeline!