Care and support

Hospices

What sort of children do hospices care for?

Children with life limiting conditions between the ages of 0-18 years.

Do children have to stay on their own at the hospices?

No- Hospices have family accommodation where families can stay. For the first visit it is recommended that the family stay but after that it is the families choice.

How do I get referred?

Anyone can refer a child including families and children themselves, GP, Consultant, Health Visitor or Children, Schools and Families.

What happens next?

The family will be asked for permission to obtain further written information from their GP, Consultant and other relevant professionals. The referral panel consisting of at least three people including the Children’s Service Manager, Hospice Social Worker and Care Team Member will base their decision on the information received. If the child meets the criteria a member of the team will visit the family and invite them to come to visit the hospice and discuss support needed.

Urgent referrals

In exceptional circumstance i.e. when a child is in the terminal stage, two team members can make a referral decision before all the written information is obtained.

Where can I get more information?

The two hospices that cover Hertfordshire are Keech Cottage Children’s Hospice in Luton and East Anglia children’s Hospice (EACH) in Cambridge. More about these hospices and their contact details can be found via the links at the end of this page.

What if I don’t want my child to go to a Hospice?

Both hospices have a team of specially trained Community Paediatric Nurses, who care for children with life limiting/threatening conditions and offer family support within the home. The nurses are based in local hospitals and work alongside National Health Service Community Paediatric Nurses. Contact and referral is the same as for the hospices.

How long will I receive support?

The team will continue to care and support you as long as you need them. Some families have support many years after the death of their child.

Who are the Pasque Community Team?

They are a team of specially trained children’s nurses who care for children with life limiting/threatening conditions and their families living in Hertfordshire and Bedfordshire. They can help with the care of your child at home by:

• Providing nursing care for your child, either to allow you to have time to yourself, or when their care is particularly difficult.
• Arranging support for every member of the family
• Offering advice and information about your child’s condition, access to other services and benefits.

Above all the nurse is someone who is committed to helping and supporting you and your family.

There is no charge for the services of the Pasque Community Team as they are funded by the hospice.

You can ask your Doctor or any other person involved with your child’s care to refer you to the team. If you prefer you can contact the team yourself. Once your referral has been received the team will request a medical summary from your GP and Consultant. The team will then consider all the information. After this a member of the team in your area will contact you to arrange a visit with you and your family.

The team will continue to care and support you for as long as you need them.

Each area has it’s own Pasque Community Team working alongside the National Health Service Community Nursing Service.
For further information contact Tanya Marshall or Nicky Newcome 01582 492339

Other information

More information can be obtained via the web links to the right of this page.

Books

Books may be useful way of helping a child / young person understand about death and help them to come to terms with what has happened. Listed below are some of the many titles available:

• Badgers Parting Gifts – S.Varley
• The Cat Mummy – Jacqueline Wilson
• Beginnings and Endings with lifetimes in between – Brian Mellonie
• Pocket Books for Children and Teenagers – Has someone you know died?