Care at the End of Life in Surrey: A Plain English Summary

This page is under construction.

Before you start

This summary talks about death, dying and grief. Some parts may be hard to read. If you need support, visit the Healthy Surrey website for help and advice.

In this summary we use the word “die.” Some people prefer to say “passing.” We respect both.

What is this document?

This is a short, simple version of a longer report. The full report is called a Joint Strategic Needs Assessment, or JSNA. A JSNA looks at what people in an area need to stay well. It helps the people who plan and pay for services make good choices.

This JSNA is about end of life care. That means care for people in the final years of their life. It also looks at what their families, friends, and carers need, both before and after a death.

The report covers people of all ages, from babies to older adults.

Words we use

Hospice: A place that cares for people who are dying, and their families. Hospice staff also visit people at home. Hospice care is provided for free.

Palliative care: Care that helps people feel as comfortable as they can when their illness cannot be cured.

Carer: Someone who looks after a family member or friend without being paid.

Advance care plan: A written plan about the care a person wants near the end of their life.

Life-limiting condition: An illness that means a person is likely to die younger than usual.

How we did this work

We wanted to answer two big questions:

• What does “a good death” mean to people in Surrey?

• What helps make death and dying as good as it can be?

To find out, we:

• looked at facts and numbers about deaths in Surrey

• talked to more than 60 people who work in care

• listened to families, carers and people who are ill

• read reports and research from across the country

Thank you to everyone who shared their stories with us.

What is “a good death”?

A good death is different for everyone. It depends on what matters to each person and their family.

People told us that these are some of the things that matter to them:

• being listened to

• being treated with kindness

• not being in pain

• dying in the place they choose

• having family close by

• having their faith and culture respected

Some facts about Surrey

• About 1.25 million people live in Surrey.

• In 2024, about 10,600 people in Surrey died.

• The number of older people is going up. By 2047, there will be about 1 in 4 more people aged 65 and over that there currently are.

• By 2040, about 1 in 4 more people will die each year than today.

• More people will live longer with more than one illness. This will make their care more complicated.

Where people die

In Surrey:

• about 4 in 10 people die in hospital

• about 1 in 4 die in a care home

• about 1 in 4 die at home

• about 1 in 20 die in a hospice

Most people say they would like to die at home, in a care home or in a hospice. Not many people say they want to die in hospital.

Surrey’s hospitals are very full. More than 9 in 10 beds are often in use. This means we need more care at home and in the community.

Babies, children and young people

Most children who die in Surrey are babies. Many die in their first month of life.

Surrey has one of the lowest rates of baby and child deaths in England. But every death is a huge loss to a family.

Children need different care from adults. Their illnesses can be rare and hard to predict. Some children live with a serious illness for many years.

Families told us what helps:

• staff who know them well

• the same people looking after them over time

• help at home, day and night

• support that carries on after their child has died

Young people moving from children’s services to adult services can fall into gaps. Some lose care they had before.

Some people are treated less fairly

Not everyone gets the same chance of good care. For example:

• Children from Asian families make up 8 in every 100 children in Surrey. But they make up 17 in every 100 child deaths.

• Children from Black families make up 2 in every 100 children in Surrey. But they make up almost 9 in every 100 child deaths.

• People with a learning disability are 3 times more likely to die from something that could have been prevented.

• People who are homeless die about 30 years younger than other people.

• People living in poorer areas are more likely to die in hospital and less likely to get hospice care.

Other groups can also find it hard to get the right care. These include:

• veterans

• people in prison

• Gypsy, Roma, and Traveller communities

• LGBTQ+ people

• people who do not speak English well

Often, we do not have good enough information about these groups. This makes it hard to know what they need.

Faith and culture matter at the end of life. For example, some faiths need to hold a funeral very soon after a death. Delays with paperwork can cause real upset.

Unpaid carers

Family and friends do most of the caring for people who are dying at home.

Many carers:

• care for 50 hours or more each week

• find their own health suffers

• feel lonely

• struggle with money

Carers often have to do hard tasks, like giving medicine or helping with feeding tubes. Many do not get enough training or support.

If carers are not supported, the whole system of care breaks down.

What is working well

We found lots of kind and caring work in Surrey. Here are some examples:

• Child death nurses support families from the moment their child dies. One mum said her nurse was “like a light” in the darkest time of her life.

• A phone line called PATCH gives families of very ill children advice 24 hours a day.

• Shooting Star Children’s Hospices has a team on a hospital baby unit. They support babies, families and staff.

• In North West Surrey, care homes got better support. Trips from care homes to A&E went down by nearly half.

• Princess Alice Hospice works with homeless services to reach people who would not normally get hospice care.

• Hospices, GPs, nurses and hospitals are starting to work more closely together in many areas.

What needs to get better

Care depends on where you live. Different parts of Surrey offer different services.

Services do not always join up. Staff often use different computer systems that do not share notes. Families have to repeat their story again and again.

Staff are stretched. Nurses and carers are working very hard. There are not enough of them. Many feel tired and upset.

Getting medicine can be hard. Families told us it can take a long time to find and collect medicine, especially at night. This means people may be in pain for longer.

Help at night and weekends is patchy. Some areas have good night-time care, while others do not.

Hospices need steady money. Hospices are free to use. But most of their money comes from donations, not the NHS. For every £1 the NHS gives Surrey’s adult hospices, the hospices raise nearly £4 more. Some hospice beds cannot be used because there is not enough money to pay staff.

People do not know what help is out there. Families and even some staff did not know about services that could help them.

The cost of care

Most money spent on people in their last year of life goes on hospital care. But research shows good care at home often costs less. It can also give people a better experience.

What we want to happen

1. Plan ahead. Work out now how much care we will need in the future, and where.

2. Bring care closer to home. Put more money into care at home, in care homes, and in hospices. Make sure help is there day and night.

3. Make care fairer. Collect better information about who is missing out. Work with local communities to design services that suit them.

4. Support carers. Ask every unpaid carer what help they need. Keep supporting them after the person they cared for has died.

5. Support staff. Give staff more training and support for their own wellbeing.

6. Get it right for children and young people. Make sure there is good care for children, and a smooth move to adult services.

7. Join things up. Help services work together and share information. Treat hospices as key partners, with fair and steady funding.

8. Help everyone talk about death. Make it easier for people to talk about dying, death and grief. Everyone has a part to play, from schools and workplaces to faith groups and neighbours.

Tell us what you think

You can send comments or questions to: [email protected]