Together for Short Lives
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Frequently Asked Questions

Two people talking about frequently asked questions on palliative care

Providing support for all stages of your child’s diagnosis and the journey you take.  We have separated the questions into the different stages of palliative care.

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 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.

Diagnosis and recognition

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 on-going 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.

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:

Family Fund

The ACT foundation

Independence at Home

Family Action

Newlife

Together for Short Lives has developed an Aids and Equipment Factsheet listing some other organisations that may be able to help you.

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
  • Therapies
  • Emotional support
  • Information
  • Short breaks
  • Education & play
  • Transition
  • Information
  • Financial issues
  • Sibling well-being
  • Home assessment
  • Aids & equipment
  • Transport

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 support network run by the charity Genetic Alliance UK offering support and information to families of children and young adults with undiagnosed genetic conditions. You can find out more at http://www.undiagnosed.org.uk or by calling 0207 831 0883.

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.

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 Families helpline on 0808 8088 100 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.

Read more on this topic on our family factsheet, Understanding Sibling Needs

Ongoing care

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)

Read more on support agencies that can help you access the benefits you are entitled to on our family factsheet on Benefits

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.

Together for Short Lives has a family factsheet on Getting Around

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 hospital’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

What happens 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.

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.

These include:

  • 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.

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.

Many organisation offer support to parents. Details of some larger organisations are listed on our Parent Support Groups Factsheet

 

Moving to adult services

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.

End of life care and bereavement

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.

Together for Short Lives has also produced A Parent’s Guide to Critical Care Choices 2014

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 Grants and Wishes Factsheet

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. Do also refer to our factsheet:  When a child dies – questions parents ask 

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 family factsheet 

I’m worried I 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.