Below is a list of questions received through the Together for Families 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 0808 8088 100 or complete our online form with any questions not listed here.
My child has a list of special things they would like to do before they die – how can I make these happen?
As your child starts thinking about the end of their life, they might come up with a list of things they want to experience, or see before they die. They might want to meet someone famous, go to Disney World, swim with dolphins, drive a train, or be a zookeeper for a day. They might just want something simpler, like to go to their favourite restaurant for dinner, get an Xbox, watch their favourite football team play, fly in a helicopter, or be a pop star for a day and record a CD.
It’s a nice idea to sit down with your child and talk about the things they might want to do; or things you might want to do together as a family. These experiences will not only be great fun, but will create some lasting memories for you all to hold on to forever.
Some of these you will be able to organise yourself, but some may be too complicated to organise, and others too expensive. There are several charities set up to help organise and fund special wishes for children with life-limiting or life-threatening conditions and their details can be found on our
I want my daughter to die at home in her own bed. Is this possible?
In most cases, it should be possible for your child to be brought home from the hospital to die. It is important however, that if this is something you think you want to do, to talk to your child’s care team well in advance so that they can plan and prepare for this. It may be that they need to get special equipment to your house before your child is brought home, or that certain staff need to be made available.
There are a lot of options available to you at the end of your child’s life, so it’s worth thinking about and planning in advance for this as much as possible to try and make sure all your choices are catered for.
Talk to your care team to explore options for your child’s end of life, including whether you would like this to happen at hospital, in a children’s hospice or at home.
I’m worried that no-one in the hospital will know about the rituals of my religion when it comes to my child’s end of life. It’s very important to our family that these happen.
Different cultures often have specific attitudes towards illness and death, and may have different practices according to the age or sex of the person being cared for. This cultural diversity leads to many varying beliefs about medical treatment, and the sort of care a child should receive.
Professionals will often be aware of different cultural attitudes, and should be able to help accommodate your wishes. Sometimes, however, professionals may not know about certain cultural practices, but they should be open to learning about your culture and how this has an impact on the way you would like your child to be cared for. Make sure you talk to someone in your child’s care team to help them understand your culture, and exactly what you would like to happen.
If English is not your first language, and you need support to help you articulate your cultural values or to help clarify your wishes, an interpreter should be made available to you if you ask a member of your child’s care team.
You could also ask a community leader to come talk to the professionals looking after your child, to help explain your cultural background and how this affects your wishes for your child’s care.
You can find out more by downloading the Together for Short Lives family factsheet, Spiritual cultural and religious wishes.
I’m worried we won’t have enough money to have a proper funeral for my son when he eventually dies. Is there any help we can get with this?
Funerals can end up costing a great deal. When older people die, they often have savings that will be able to contribute to the cost. When children die, there generally aren’t any savings for this, particularly when a child deteriorates quickly.
It’s only natural to want a funeral or other service to be right for your child, and you don’t want to have to compromise in any way. Costs will include funeral director fees, cremation/burial fees, flowers, cars, refreshments, and more.
There is help out there if you think you can’t afford it.
If you are receiving certain benefits, you may be eligible for a funeral payment to cover burial or cremation fees and up to £700 to help with other costs.
The Natural Death Centre has information on keeping funeral costs down.
The Co-operative funeralcare will waive costs for the funeral of a baby or child (not including flowers, cars, refreshments etc.) and most independent funeral directors will do the same.
If you live in England or Wales and don't qualify for support through the Family Fund, an on-line referral from your professional to the Child Funeral Charity may provide you with financial assistance and advice on funeral arrangements.
Because my daughter has a serious health condition, does that mean that she can’t register for organ donation?
If your child has had a long-term illness, it may not be possible to consider major organ donation, but it could well be appropriate to discuss donation of tissues, such as heart valves or corneas (part of the eye).
You should speak to a member of your child’s care team such as GP, community nurse or health visitor if you think you might be interested in exploring donation possibilities. This should be done as soon as you start considering it, as plans will need to be made in advance to ensure the donation happens smoothly.
If your child is in hospital, especially in a high dependency unit (HDU) or intensive therapy unit (ITU) it may be that a transplant co-ordinator or other specialist member of staff may approach you to discuss you or your child’s views on organ donation.
Remember it is your choice completely, and you should not feel pressurised or rushed into thinking about organ donation if you don’t want to.
I think I’m eligible for benefits now because of my child’s diagnosis, but I’ve never claimed benefits before – where do I start?
The benefits system can be really difficult to navigate, especially when you’re not familiar with it. The best thing to do is to speak to a member of your care team – your health visitor, social worker or community nurse for example – and they should either know themselves what you are entitled to, or know who you should ask.
There is good information on the internet, on DirectGov (England)
Together for Short Lives has produced a Factsheet on Benefits providing details of other organisations that may be able to help.
It’s difficult for us to get my son’s wheelchair around town – can I get a special permit so we can park closer to the shops?
The Blue Badge scheme entitles certain groups of disabled people to park in parking restricted areas. It is available in most areas, but some city centres do not operate the scheme.
The Blue Badge scheme does not normally apply to children under two, but in England, Scotland and Northern Ireland, exceptions are made when children have certain medical requirements.
For more details, contact the Blue Badge Helpline on 0207 944 2914 or 0161 367 0009 or visit the DirectGov website.
Click here to access the Together for Short Lives Factsheet on Transport.
What do I do if I am unhappy with the standard of support being provided?
If you feel that you have not received the standard of support you are entitled to, you may wish to make a complaint. There are processes in place as well as agencies that can provide you with support.
The processes vary depending on where you live in the UK so do visit our resource area to find the right Factsheet on Making a Complaint in your area.
If you are unhappy with any aspect of care provided while in hospital, do make contact with the hospitals's Patient Advice and Liaison (PALs) team. Their details should be well publicised in the hospital but do call our Helpline on 0808 8088 100 to find the right number for you.
If you feel you would benefit from additional support to help draft a letter or an appeal, Together for Short Lives has an Advocacy Support Service that may be able to offer assistance. Call us on 0808 8088 100 for more information.
I would like to take my child on holiday, but I'm worried that we won't be able to find travel insurance to cover us.
Organising a holiday for you and your family can be really exciting and something for the whole family to look forward to. However, we know that when your child has a complex health condition, arranging travel insurance can often feel overwhelming and very confusing.
Free Spirit (a specialist travel insurance provider) have developed some useful tips for you to think about when arranging your specialist travel insurance so you are better equipped to find the right cover for you and your family. Please click here for further information: Free Spirit Q A
What if my child's Doctor and I do not agree?
Hopefully you and your doctor will be able to reach a decision that you are both happy with. The doctor and the healthcare team should be there to support your decision as long as they believe your care choices are in the best interest of your child. However sometimes it is hard to reach an agreement. If you and your doctor cannot decide on a care plan on which you both agree there are other ways in which you can resolve things and achieve consensus through mediation.
Your first option is to seek a second opinion. Your consultant should be able to arrange for an independent second opinion. They can arrange for all the medical files and information about your child's medical history to be shared with an independent consultant. The independent consultant may wish to see you and your child, but this may not be necessary.
The independent consultant will assess your child's condition and prognosis and will look specifically at why you cannot agree on a care plan.It is their role to ensure that the care plan is in your child's best interests. They will want to help you all reach a decision that you can agree on. On rare occasions parents and the medical team still fail to agree. Prior to asking the Court to resolve matters, the hospital may have an ethics committee, which comprises of a range of independent medical and ethical experts and lay personnel. Their role is to review your child's care options and make recommendations.