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Caring in the community for children and young people

By Leanne Asling, Community Team Leader at Chestnut Tree House

Some people think that all our care takes place at Chestnut Tree House, but this couldn’t be further than the truth. As well as organising day trips to places like the Sea Life centre, adventure parks, and even speedboating, a lot of our care takes place in families’ own homes.

Our community care is a vital aspect of the hospice. It gives parents and carers in Sussex and South East Hampshire a well-earned break, children and young people a routine and some independence, and it gives families additional support during times of crisis.

Care in the community

Watch our short video and hear from our nurses and care workers about what kind of care we offer outside of the hospice.

As Community Team Leader, I want to take this opportunity to tell you what community care means for children, young people and their families and the services we offer.

Giving children and young people independence

When we visit a family’s home, each child (depending on their abilities) and family are empowered to make a choice on what they want to do. Whether they want to go out and do an activity, stay at home, visit Chestnut Tree House, or even go and see a sibling’s school play, we can facilitate that.

On a typical visit, we include clinical care which, depending on each child’s needs, can include medication, feeding, and clinical interventions. What we get up to on each visit varies – some children like routine and want us to do the same activity each time, whilst others want to do something different.

Ways we help

Recently we put hours of careful planning into making a dream come true for a 10-year-old boy who wanted to climb the nets at an adventure playground for the first time. He’s on long term ventilation and can’t breathe without his tracheostomy so needed three of the care team on hand to make this trip out happen. Two nurses stayed at the bottom of a slide (the quickest route down!) with all the equipment he’d need if he got into any trouble, or his tracheostomy came out. He had the most amazing time!

Giving parents and carers a break

Children and young people with a life-limiting or life-threatening condition often require 24/7 care, and due to their complex medical needs, a parent may be the child’s sole carer.

Community visits provide families with respite and an opportunity to take time away from their round-the-clock caring duties. Some families like to use this time to relax or get on top of daily errands, others like to use it to spend quality time with their other children, and some like to take the opportunity to go out for dinner or to the cinema.

Whatever they choose to do, we are there to take care of the child, allowing parents and carers to have time for themselves or relax with their child and just be ‘mum’ or ‘dad’ rather than a carer.

A day out with a Chestnut Tree Nurse

Offering additional support

Often the children and young people we care for have complex health, care and nursing needs that require a range of skills and services, provided by different organisations and professionals. From doctors’ appointments, meetings with consultants, school nurses, social workers and so on, there can be several services involved and it’s important that we all work together to provide care for families.

To help families, we can attend different meetings with them, such as those with doctors, consultants, and schools, to ensure that everyone involved in the child’s life is working from the same information. This also ensures that families have a constant person who can help if they have any questions.

Each family is given a key worker that is only a phone call away, so we have regular contact between visits. Families often phone us if they have a medical question or need some advice. It’s important for us to build those relationships and be there to help families when they need us most. Parents and carers often ask us questions such as:

  • How can we get more support at home?
  • What local activities are easily accessible for my child?
  • What support is available for my other children?
A day out on a speedbaot with a community nurse

Being there at a time of crisis

Families can be in ‘crisis’ for so many different reasons – they might be moving house, have a family emergency, having another baby, and so much more. These are stressful situations for anyone, but when you have a child with complex needs, it can be unmanageable.

If a family is having a difficult time, we will always try to offer additional support when we can to help ease the situation.

Being there at the end-of-life

Being there for families throughout their journey is a vital part of our care and we consider it a privilege to be alongside families around the time of the death of their child to offer help, support, or guidance.

We have a nurse on call 24/7, meaning that when we know a child is nearing the end of their life, we are only a phone call away.

At this difficult time, we are often involved in complex decision making and symptom management, managing the child’s medical needs to make sure they are as comfortable as possible in their final days, hours, and minutes. Our nurses can move the child to our Stars bereavement suite or to a funeral director, depending on the family’s wishes.

When a child dies, there are steps that need to be taken, and this can often feel overwhelming for families when they are going through such a distressing time. We are there to support them through this process and help ensure that everything that needs to be done is done, at the same time as supporting and guiding the family through their preparations for the funeral and returning home.

Ongoing support

The family’s key worker will stay in contact with the family after the death of their child, offering support, advice and a familiar face. Often, when a child passes, all services are stopped, and this can make families feel isolated and make this process even more difficult to deal with.

Our bereavement team will do all they can to help families for as long as they need. They will be able to offer support in the way of counselling, bereavement groups, and play and creative arts therapy for siblings. There is no time limit on this support and it is offered to the whole family – parents, siblings, grandparents.

Community care is a vital part of our services, and I’m proud of myself and my team every day! Find out more about our care.

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