A patient at Chestnut Tree House

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What does palliative care mean?

By Anna Jones, Director of Children’s Services

There are estimated to be 86,625 children and young people (aged 0-19 years), with a life-limiting or life-threatening condition in the UK. Life-limiting and life-threatening conditions (LLC) are definitions which have been used to describe the population of children who may benefit from input from paediatric palliative care services as the child or young person will have a shorter life due to their condition.

We’re seeing an increase in the number of children with life-limiting conditions

Children are living longer and are also living with increased medical complexity which requires skilled, intense, and often continuous care. For children , this often means undergoing various treatments and procedures. It is important that children are supported to live with their condition, to achieve quality of life and to be able to access all the everyday activities that children and young people like to do.  For families providing round the clock care, this can have a significant impact on their physical, social, emotional, and financial circumstances and places an increasing demand on parents and carers and therefore palliative care services can provide valuable support.

Paediatric palliative care services can be offered to children and their families on the diagnosis of a life limiting condition.  To be receiving care from palliative care services can sound frightening but what exactly does that mean?

Palliative care is… achieving quality of life

Palliative care for children and young people with life-limiting conditions is about helping them, and their families, live as full a life as possible, no matter what their condition. We support children, young people, and their families in so many ways. Yes, we support their physical care needs, but it’s so much more than that.

  • 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, parents may be the child’s sole carer. Our short-break inhouse care and community visits provide families with an opportunity to take time away from their round-the-clock caring duties. Activity days allow families the opportunity to come and use some of the hospice facilities as well as being entertained by our activities team.

  • Having someone to talk to

There are so many ways for children, parents, and siblings to meet new people at Chestnut Tree House, and it’s often beneficial for them to meet others in a similar situation. For example, for siblings growing up with a brother or sister who has a life-shortening condition, finding people who understand their situation can be difficult. Our sibling events give children the chance to meet others facing the same challenges, make some new friends, and express themselves in a safe environment.

  • Playing and having fun

Play is an extremely important part of children’s hospice care. When a child visits us, whether it’s for a day visit or a short break, the activities team is on hand to facilitate bespoke activities. Each child’s needs and interests are different, so this can vary from creating a quiet space to relax in our sensory room, splashing around in the pool, or using the music room to crash, bang, and make as much noise as they want. It’s important for children at the hospice to have fun, play, feel confident and just be children.

Palliative care is… working together

In palliative care it’s not just managing the child’s physical care needs, it’s also supporting the emotional, social, educational aspects where they struggle and need extra support. So, we do all we can to help families manage this.

Children and their families have complex needs that require a range of skills and services provided by different organisations and professionals. From medical appointments, meeting with the wider multi-disciplinary team including school nurses, social workers and so on, there can be a number of services involved and it’s important that we all work together to provide seamless care for families.

Each child at Chestnut Tree House has a key worker who supports them throughout their time with us. Key workers will liaise with other professionals and the family to ensure that everyone involved in the child’s life is working together. This also ensures that families have a constant person who they can ask questions and advice as and when needed.

Palliative care is… being there at end of life

Image of a Nurse holding hands with a parent

The circumstances surrounding a child’s death can have huge impact on family members and can imprint memories which will always stay with the family.

Throughout their journey with us, families and children are empowered to make decisions about their care. Some families want their child to be cared for in the comfort of their own home, whilst others may want to be at the hospice. Families also make choices and plan any spiritual, faith and cultural care that they wish to happen.

These decisions are tough to make, and some families may change their minds about decisions and wishes. We are here to help facilitate changes and ensure that each child’s and family’s wishes are met at the end of life.

  • Support at end of life

We have a nurse on call 24/7, meaning that when a child is requiring our care, we are only a phone call away. Being there for families throughout their journey is a vital part of palliative care and the team work alongside families offering help, support, or guidance.

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.

  • Facing bereavement

The death of a child is a challenging and a very emotional time for families. We are there to support families during this time as well as the days, months, and years to follow.

  • Stars bereavement suite

Our stars bereavement suite is a designated, quiet room where children and young people may be placed after they die for a period of time, where the family can spend time with their child. This facility is available to any family even if they have not been cared for by us.

  • Bereavement support

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.

  • Collecting memories

We can help a family collect meaningful memories to help them remember their child. Each family is offered an engraved pebble that they can either take away or place in our remembrance gardens. We can also help families create handprints and footprints and memory boxes.

Palliative care is… ongoing support

A female volunteer smiling behind a desk

Our bereavement team will do all they can to help families. They will be able to offer support in the way of counselling, bereavement events, and play and creative arts therapy for siblings. There is no time limit on this support offered to families.

The phrase ‘palliative care’ is often misunderstood and conjures up a lot of negative thoughts about death and dying. However, the focus of paediatric palliative care services, is about achieving quality of life and living with conditions. Get in touch if you’d like to know more about our care and services.

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