Below is a list of questions received through the Together for Short Lives helpline in the past. This is by no means a comprehensive list - these are just the most commonly asked questions, which we hope help you to find some of the answers you are looking for. We will be adding to this list on a regular basis. Please call our helpline on 0845 108 2201 or complete our online form with any questions not listed here.
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.
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.
What is end of life care?
The end of life phase begins when a judgement is made that no more treatment is possible, and that a child will die soon.
End of life care helps children who are no longer receiving curative treatment to live as well as possible until they die. It focuses on preparing for death and managing the end stage of a terminal medical condition. This includes care during and around the time of death, and immediately afterwards. It enables the supportive and palliative care needs of both the child and the family to be identified and met throughout the last phase of life. It includes management of pain and other symptoms and provision of psychological, social, spiritual and practical support and support for the family into bereavement.
An end of life care plan is a document that outlines you and your child’s wishes for their end of life care and death.
You can find out more by visiting ‘End of life’ in the family journey section of this website.
What do children's hospices do?
Children’s hospice services provide palliative care for children and young people with life-limiting conditions and their families. Delivered by a multi-disciplinary team and in partnership with other agencies, children’s hospice services take a holistic approach to care, aiming to meet the needs of both child and family - physical, emotional, social and spiritual - through a range of services.
- 24 hour end of life care
- support for the entire family (including siblings, grandparents and the extended family)
- bereavement support
- 24 hour access to emergency care
- specialist short break care
- 24 hour telephone support
- practical help, advice and information
- provision of specialist therapies, including physiotherapy, play and music therapy
- provision of information, support, education and training to carers, where needed
Children’s hospice services deliver this care in the home (commonly termed ‘hospice at home service’) and/or in a purpose built building.
To see if you are eligible to receive support from your local hospice, phone them and ask to speak to the care team. They will then work with your child’s consultant to see if they can help you.
You can find your local children’s hospice by visiting ‘Support in your area’.
How can I tell my other children about their brother or sister’s condition?
Many parents worry about how they can share their child’s diagnosis with siblings. You will probably be worried about how they will react. You may want to protect them from the truth. You might not feel emotionally strong enough to say the words you need to, or worry about crying in front of your children. You may be concerned about using the right words to describe what is happening to their brother or sister.
Being truthful may be difficult, but it can save a lot of pain and misunderstanding in the future. It also builds the trust between you and your children.
You might not always know the answers to questions your children ask. But it’s ok to be honest and say you don’t know.
There are lots of organisations and support available. To find out more you can call the Together for Short Lives family helpline on 0845 108 2201 or contact Sibs, a specialist organisation for people who grow up with a disabled or life-limited brother or sister.
If you are in touch with your local children’s hospice, you could talk to them about explaining things to your children. You could also talk to your GP or another professional who is supporting you.
I feel like I’m constantly caring for my child. I think I really need a break from it all. Is there help out there?
If your child has been diagnosed with a life-limiting or life-threatening condition, social services have a statutory responsibility to assess your needs and provide you with short breaks and care in the home as necessary. If you are the main carer, you also have the right to a carer’s assessment through social services. This assessment should result in tailor made solutions, including the provision of short breaks, to meet your need.
Many organisations provide ‘short breaks’, also sometimes known as ‘respite care’. These breaks can be for a few hours, or days, depending on what you need and what is available. Some of these will provide carers to come to your house and look after your child while you do things around the house, or go out for a while. The carers will always be fully trained and qualified to look after your child, so you can leave knowing they are in safe hands.
Other organisations, like children’s hospices, can provide residential short breaks where your child, or even the whole family, can go stay for a while and have your child looked after while you take a break from caring and relax. You might want to stay as well and just rest, or you might want to go away for a few days and spend quality time with your partner and/or other children. These organisations will not only take care of the medical side of your child’s needs, but will run activities and keep them entertained and stimulated throughout their stay.
Residential short breaks will also cater for siblings, enabling them to have fun and receive support in their own right.
I’ve been told I’ll need some new equipment for my child now he has been diagnosed. How do I go about getting it?
You may need specific pieces of equipment to help you care for your child and you should be assessed by someone from your local authority, primary care trust or children’s team who can inform you about the options and services available to you. This assessment should be ongoing and equipment needs to be assessed on a regular basis.
You may need specialist bedding or clothing, particularly if your child experiences difficulties with continence. Your local health service may provide continence aids including nappies, but the age of qualification for this varies from service to service. Your health visitor or another member of the care team should be able to give you advice about equipment. You might find it helpful to contact the Disabled Living Foundation, or Assist UK, which is also a useful source of information and advice about all types of equipment.
Equipment that is deemed necessary to daily living as a result of an assessment should be provided to you free of charge. If you require other aids or equipment not catered for by the local authority, you may need to pay for this yourself. If this is the case, and you cannot afford it, you can make an appeal to your local authority – you should contact a member of your care team about this. There are also grant giving organisations that may be able to help in this situation, such as:
What happens during an assessment of my child’s needs?
As soon as possible following diagnosis, your child’s needs will be discussed with you and assessed by a team working with you to ensure that your child gets the ongoing care they need and that your choices are taken into account. This is often called a ‘multiagency needs assessment’.
A needs assessment is there to provide you with an opportunity to raise concerns, and for the full range of needs for your family to be explored. The ultimate goal should be that your child and your whole family receive the help and support they need.
Another main purpose is to draw together professionals from various teams and settings in the one assessment so you don’t have to have various assessments for different professional teams (for example, community nurses, education and consultants).
The key objectives of an assessment should be:
- To gather factual information about your family
- To explore your family’s concerns (including extended family)
- To assess the full range of medical, nursing, practical, social, educational, psychological and spiritual needs
- To explore options for meeting these needs, according to what is available in your local area
- Result in an agreed care plan
A multi-agency assessment of needs should cover the needs of the whole family, and should involve the following aspects:
- Pain and symptom management
- Care needs
- Emotional support
- Short breaks
- Education & play
- Financial issues
- Sibling well-being
- Home assessment
- Aids & equipment
There’s no name for my child’s condition, how do I get the help I need?
You may have been told that your child might not live to adulthood, but not have been given a specific name for their condition. Because there are so many rare and complex childhood conditions, it is not uncommon for this to happen. Even so, it can make you feel even more uncertain about your child’s future and can make you feel isolated. SWAN UK (Syndromes without a Name) is a project run by Genetic Alliance UK offering support and information to families of children with undiagnosed conditions. You can find out more at http://swanuk.wordpress.com or by calling 0207 704 3141.
Don’t worry – even without a named diagnosis, you are entitled to support which will be based on your family’s needs, not your child’s diagnosis.
My child is going to have to move to adult services soon; should I be worried they won’t get the same attention they have done in children’s services?
It is important to begin planning for your child’s transition to adult services at an early age – ideally at 14. It is common for parents to feel reluctant to face the prospect of moving on to adult services, where it may seem that there is little expertise in particular childhood conditions, but it can help to make the transition easier if you meet with the new professionals and services in the adult sector and begin to make the emotional adjustment to a different, more adult-centred system of care.
Try not to worry about this stage of your child’s life and the care they will receive. It is only natural to feel anxious about the future, and any change brings about uncertainty.
Adult services are very different from children’s services in the way they are organised, and the names used for certain services may differ from the children’s sector. Despite these differences, you should feel confident that the level of care will remain the same, and that as long as your family’s needs are met, it will be ok. By planning ahead you will have the chance to familiarise yourself ahead of time with the different services and terms used, and have the chance to ask your care team any questions you might have, so that you feel comfortable with everything before your child makes the move into adult care.