21st August 2026 • My Family Our Needs

As more children with life-shortening conditions live longer, families may find themselves navigating increasingly complex care. In this ‘How to’ blog, Mandy Thorpe from Martin House Children’s Hospice explains what good palliative care should look like, what parents can expect from professionals and why comfort, communication and joined-up support matter.

Medical advances have changed what is possible for babies, children and young people with life-shortening conditions. More are surviving infancy, living through childhood and reaching adolescence or adulthood.

That progress should be celebrated. But many children are also living with increasingly complex needs, involving specialist equipment, multiple medications and support from a range of professionals.

For families, that can mean navigating care across hospitals, community teams, schools and specialist services. It can also mean meeting professionals with very different levels of experience in children’s palliative care.

So what should parents and carers expect from the professionals supporting their child?

You should feel that professionals understand your child

Good palliative care is not simply about what happens at the end of life.

It is about understanding what will help a child live as well and as comfortably as possible, managing symptoms, planning ahead and recognising when specialist support may be needed.

Not every doctor, nurse or therapist will be a paediatric palliative care specialist. Nor do they need to be. But they should have enough understanding to recognise when palliative care may help, understand its principles and know when to seek specialist advice.

For parents and carers, that means it is reasonable to expect professionals to listen carefully, understand your child’s individual needs and recognise when they need support from colleagues with more specialist knowledge.

Care should be about comfort as well as treatment

Healthcare training has traditionally placed a strong emphasis on recognising deterioration, intervening quickly and resuscitating patients.

Those skills are essential, but there are circumstances in paediatric palliative care where the best outcome is not necessarily preventing a child from dying.

It may instead mean recognising that further invasive treatment will not benefit them, managing symptoms, following an agreed care plan and keeping them comfortable.

Families should feel able to ask what the aim of a particular treatment is, what benefit it is expected to bring and how their child’s comfort and quality of life are being considered alongside clinical decisions.

Professionals should know when to ask for help

As more children live longer with complex conditions, a wider range of healthcare professionals will become involved in their care.

Paediatric palliative care therefore cannot be knowledge held only by hospice specialists.

One of the most important things a professional can do is recognise the limits of their own experience.

Parents should not expect every person they meet to have every answer. They should, however, expect professionals to know when additional expertise is required and how to access it.

At Martin House, our education work is designed to help professionals develop that knowledge and confidence before they encounter these situations in practice.

Good care takes teamwork

Children with complex needs are often supported by many different professionals.

That makes communication and coordination particularly important. Professionals need opportunities to understand their own role, the roles of colleagues around them and how agreed care plans should guide decisions.

Simulation training can help teams rehearse rare but significant situations without placing a child or family at risk. It allows professionals to develop clinical judgement, teamwork and decision-making in a safe environment.

For families, good care should feel joined up rather than fragmented. The professionals involved should understand the plan for your child and know who to contact when specialist advice is needed.

It is OK to ask questions

Parents and carers know their child better than anyone.

If something is unclear, it is reasonable to ask:

• What is the aim of this treatment?
• How will it help my child?
• What are you doing to keep them comfortable?
• Is there a care plan in place?
• Who should I contact if their condition changes?
• Do we need advice from a specialist palliative care team?

Those conversations should be part of good care, not something families feel uncomfortable about raising.

Education matters to families too

The number of children and young people in England identified with life-shortening conditions rose by 163% between 2001/02 and 2017/18, from 32,975 to 86,625. More than 95,000 were projected to be living with these conditions by 2030.

That changing picture means workforce education matters directly to families.

Children’s palliative care services need specialist teams and resources, but they cannot work in isolation. The wider workforce also needs the knowledge and confidence to support children with complex needs.

Preparing healthcare professionals does not mean turning everybody into a hospice specialist.

It means that when they meet a child with palliative care needs, they feel equipped to respond well, know when to seek help and understand that good care is about the individual child and family in front of them.

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On Tuesday 15 September, Martin House is hosting its inaugural conference dedicated to paediatric palliative care. For more information and ticket details, click here.

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