Looking after yourself: support for carers

Palliative care is all about helping people to embrace the joy in life, for whatever time they have left. When a child or young person enters our care, their wider family becomes part of the hospice community too.

Caring for someone with a life-limiting condition is exhausting. It can take its toll on family life. Often, carers are the ones holding everything together. That can be distressing and exhausting, so it makes a huge difference to have a safe space to explore their challenges.

How we can help

Our Patient and Family Support Team offers support to children, young people and their family members. Our therapists, social workers and chaplain provide emotional support and spiritual care, along with social care, advocacy and advice. We work with people individually and in groups, in a range of different settings, from play therapy and relationship counselling to music therapy.

Often, the carer feels invisible and unheard. Managing the needs of a child with a life-limiting condition is hugely complex. As well as administering medicines and personal care, carers are often fielding appointments with specialists at different hospitals, managing prescriptions or medical equipment and finding out what government assistance is available. They may be on their knees – worn out from holding the family together. We can help them find ways to manage things.

Together on the journey

When a child has a life-limiting condition, it affects the whole family – from parents and siblings to grandparents. It can be very helpful for a family to know that we’re alongside them at different parts of their journey. That journey will change course at different times, and they can access the support as and when they need it.

For me, it’s very humbling to travel alongside someone in their most difficult times and circumstances. It is a privilege to be invited into somebody’s life to support them in their darkest hour, and to be able to bring some hope into that space.

Resources for carers

If you’re struggling, you don’t have to go through it alone. We can offer support to any carers who are already known to the hospice – get in touch to discuss how we can help.

There’s also help available from other organisations and charities, such as:

• Carers UK – National organisation dedicated to supporting all different types of carers.
• NHS England – Information about Benefits you might be able to claim, your Rights as a carer and respire care help.
• Carers Support West Sussex – Help in the local area – including groups connecting you with other carers, information and guidance.
• Care for Carers – Resources, help and advice for carers in East Sussex

Please note – External links are not endorsements by (or connected to) Chestnut Tree House.