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Parents FAQs

What services does Helen & Douglas House offer?

Our services are free of charge to families and offers a range of services to support babies, children and young people and their families. Services range from in-patient support, support in the family home, symptom management, end of life care and bereavement support.

How many children and families do you care for?

Helen & Douglas House supports around 185 children with life-limiting conditions, and their families living in Oxfordshire and surrounding counties. We provide support in our children’s hospice, in the family’s own home, and in hospital settings.

How much does it cost to run Helen & Douglas House?

It costs over £3 million a year to care for local children with terminal and life-limiting conditions, at our hospice in Oxford, in the family home and in hospital.

How do you decide who receives care?

Referrals can come from anywhere (e.g. the family, GPs, hospitals, consultants, community nursing teams). We ask that referrals are made with the full prior knowledge and consent of the child or young person’s main carer. We then assess the needs of referred children or young person and, after obtaining written consent from their families, look to find further information about their condition from the professionals they see regularly.

Each week we hold a multi-disciplinary referral panel, where we look at the information provided and decide together if the child or young person fits our referral criteria. If a child or young person is refused, we will always reconsider a further referral or signpost them to another service if their condition changes or new information becomes available. Similarly, there is a regular review of each child we support to ensure we’re giving them the best care possible.

How long does the referral process take?

The referral process for a child or young person can take a minimum of two weeks. Care can be arranged quickly once they’ve been accepted. In an emergency situation, the referral of a child or young person could take a matter of hours.

Can I stay with my child?

We have family accommodation within the hospice, and we give priority to first assessment stays, symptom management and end-of-life care.

How will you know how to look after my child?

We will carry out a care needs assessment and write your child’s individual care plan in partnership with you. We will also chat with you regularly to make sure that we keep the care plans up to date. We will also contact the other people who support you e.g., the dietitian and discuss your child’s needs with them.

Who will care for my child?

We have a team of doctors, nurses, clinical support workers, play team, who will look after your child.  Your child will be looked after on a one-to-one basis during the day, and there is always a registered nurse on shift to support the team.

What would I need to bring when my child comes to stay?

We would ask that you bring all medication equipment required to care for your child, their toiletries, clothes, and nappies.  Any special comforters or toys are also welcome, although we do have a wide range of toys and activities in the hospice.  We also required all enteral feeds, medications, which must be labelled correctly, in date with evident of the current does from a doctor, and syringes.

What is children's palliative care?

Children’s palliative care is an active and total approach to care, from the point of diagnosis or recognition, throughout the child’s life, death and beyond. It embraces physical, emotional, social and spiritual elements and focuses on the enhancement of quality of life for the child or young person and support for the family. It includes the management of symptoms, provision of short breaks and care through death and bereavement.

(Together For Short Lives FAQ’s)

What's the difference between a life-limiting and a life- threatening condition

Life-limiting conditions are those for which there is no reasonable hope of cure and from which children will die. Some of these conditions cause slow deterioration over time rendering the child increasingly dependent on parents and carers.

Life-threatening conditions are those for which curative treatment may be feasible but can fail, such as cancer.

(Together For Short Lives FAQ’s)