Family Q & A

Throughout the many years we have been helping and talking to families of seriously ill children Happy Smile Children’s Charity have become aware that many parents have the same questions and things that they don’t quite understand.

 

For example we have regularly been asked what is children’s palliative care?

 

Children’s palliative care is a blanket term for the care that your child and your family will receive through the diagnosis, treatment and end of life care. The care you will receive is not only treatment based, you will also receive emotional support throughout your child’s illness and this will continue after their death. You will receive help with caring for your child and be offered breaks where your child will be fully cared for while you can take a much needed break. The aim for children’s palliative care is to provide support, emotionally, physically, socially and spiritually.

 

People ask what the difference between life-threatening and life-limiting illnesses?

 

Life-threatening illnesses means the conditions that can be treated but there i a risk the treatment won’t work and the child may die.

 

Life-limiting illnesses are the conditions where there is no possible cure and the child will eventually pass. Many of these illnesses progress in severity over time putting a huge strain on the families coping with a deteriorating child and facing the loss of their child.

 

Many people ask us what is end of life care?

 

End of life care begins when the decision has been made that no more curative treatment can be given and the child is going to die.

 

Children under end of life care will still receive treatment to help ease pain and other symptoms, enabling them to live as comfortably as possible until the end comes.

 

End of life care is there to support children as they face the final stages of a terminal illness. Children and their families will be offered medical, psychological, spiritual, social and practical support. The end of life care is provided during the end stages of life, during death and immediately after.

 

If the health care professionals believe that end of life care may be a possibility they will talk to you about creating and end of life care plan which will include all yours and your child’s wishes at that stage. Your child can have an input they can add what they would like to happen at their funeral. You as a parent can document decisions about whether you would want to remove IV lines and feeding tubes and allow a natural death.

 

We are often asked what do children’s hospices do?

 

Children’s hospices are ran by a multidisciplinary team, they work with other agencies and partners to provide palliative care to children and young people with life-threatening conditions. The services they offer are medical, spiritual, holistic, physical and aim to meet the needs of not only your child but to the wider family as well.

 

The services offered by children’s hospices are vast and varied below we have listed some of the services that the hospices provide

  • Practical information and advice
  • 24 Hour emergency care
  • Specialist centre that offer short breaks
  • 24 Hour phone support services
  • Physiotherapy
  • Play and music therapy
  • Information, education and support to carers
  • Whole family support services – For siblings, grandparents, parents and the extended family
  • 24 Hour end of life care
  • Bereavement support services

The services offered by the children’s hospice are sometimes delivered at home the term used to describe this is hospice at home care.

 

If you are unsure whether you are eligible to receive help from the children’s hospice speak to your child’s consultant and they will be able to help you find the right support for your child and you the family.

 

Families are also unsure how they should tell their other children about their sibling’s illness.

 

As a parent you will be understandably worried about how to tell your other children that their sibling has a terminal illness. You may worry about how they will react and exactly what you should say to them. You might be scared that you will cry infront of them and scare them or worried that you won’t be able to find the right words.

 

Hearing feedback from other families we believe that although being honest might seem difficult it can save a lot of heartache further down the line, it also helps them to understand the situation and it builds trust between you and them.

 

There are many organisations that will be able to help and support you through this distressing time and help you find the right way and the right words to use when explain the situation to your other children.

 

Your GP might also be a good place to turn for help and support especially if you or your family is struggling to cope.

 

Another question we are frequently asked at Happy Smile Children’s Charity is – ‘Is there any help out there for me, I feel like I’m constantly caring for my child and I need a break’.

 

Social services have a statutory responsibility to assess the needs of your child and your family when your child has been diagnosed with a life-threatening or life-limiting illness. They have the capability to offer you short breaks from caring and can also arrange for you to have care at home. If you are the main carer for your child, social services will conduct a carer’s assessment and produce a plan tailored to your individual needs offering solutions such as short breaks.

 

The term short break is sometimes referred to as respite care. The short breaks come in varying lengths from a couple of hours to a couple of days dependant upon your requirements and what is avauilable at that time. Sometimes a carer will come to your home and care for your child while you go out for a little while. All carers are fully trained and experienced in caring for children with serious illnesses.

 

Children’s hospices can provide a longer short break such as a residential stay for a couple of days. The children’s hospice can either care for your child while you all take a break or the whole family can stay and enjoy the extra help provided. The staff at the hospice will be able to look after your child’s medical needs along with involving them in fun activities, you could use this as an opportunity to spend time alone with your partner or other children. The hospice and other organisations offering residential short breaks are able to provide support to your other children and to you as parents.

 

Some parents have told us that once their child has been diagnosed they are told they need specialist equipment and are unsure how to it. For example there may be various pieces of equipment that you will need to help you care for your child during their illness.

 

Someone from the local authority, children’s team or primary care trust should come out to see you and carry out an assessment and advise you of all the services and options that are available to you. Any equipment provided to you should be assessed regularly and the services should be ongoing.

 

There are numerous items that you may require such as specialist clothing and bedding if your child has continence problems. Any equipment that is deemed to be necessary for your child to live their day-to-day lives should be free of charge although the rules and age limits vary from area to area.

 

Any other specialist equipment such as aids may not be provided by the local authority and you may be asked to pay for it, if you are unable to afford this you can put in an appeal to the local authority. If this is the case you should contact a member of the team caring for your child and ask for their advice, there are also grants available that you might qualify for, for example Independence At Home, Family Fund, Family Action and The ACT Foundation.

 

Families often ask us what happens during an assessment of their child’s needs.

 

Once you have received your child’s diagnosis, a team will be called on as soon as possible to assess the needs of your child and this will all be discussed with you.

 

The assessment is carried out to make sure your child receives the best ongoing care for their individual needs, your input will always be taken into account. The assessment for your child will sometimes be referred to a ‘multi-agency needs assessment’.

 

The needs assessment is designed for you to be able to raise your concerns whilst exploring the full range of services. The end goal is to make sure your child and your family receives all the support you need and deserve.

 

The assessment brings together professionals representing various teams such as community nurse, consultants and education. The assessments bring these professionals together so that you don’t have to go through numerous assessments with different teams.

 

Below we have listed the key objectives of an assessment.

  • Assess the full range of psychological, spiritual, practical, social, nursing and medical needs.
  • Explore the family’s and extended family’s concerns.
  • Exploring options available in your area to meet the needs identified.
  • Gather factually correct information about your family.
  • Create an agreed care plan.

When you are attending a multi-agency assessment the below points should be covered.

 

  • Short break options
  • Sufficient information
  • Therapies on offer
  • Care needs
  • Pain management & symptom management
  • Emotional support
  • Home assessment
  • Play & education
  • Transition information
  • Transport
  • Equipment & aids needed
  • Financial problems
  • Sibling well-being

Parents often come to us and say – There isn’t a name for my child’s condition….How do I get the help and support I need?

 

There are so many rare and complex conditions that affect children it is not uncommon to be told that your child won’t live to see adulthood but not be given a specific name for the illness they have.

 

This can lead to feelings of confusion and anger amongst you and your extended family. You can be left feeling very unsure of the future and what it holds for your child. There is a fantastic organization called SWAN UK which stands for Syndromes Without A Name ran by Genetic Alliance Uk who will be able to provide you with support and information.

 

Happy Smile Children’s Charity would like to reassure you that even without a name for your child’s condition you are still fully entitled to support based on your child’s needs just the same as if the diagnosis had a name.

 

Parents often ask us what will happen as their child is about to move to adult services and are concerned they won’t get the same level of care as they did under child care.

 

You should start preparing for your child to move up to adult care as early as possible we would recommend around age 14, this gives you and your child the time to adjust to the prospect of a different set up than what you have become accustomed to. It isn’t unusual for you and your child to feel un-easy about the transition however your child will receive the same level of care under adult services , the expertise in dealing with the condition your child has will still be at the same level it has been at.

 

The adult services use different words for some services than child services and the environment is more adult orientated, however your families needs will still be met. If you plan ahead it will be less hard for you all, this will give you time to learn about adult services and arm your child with as much information they require. You can familiarise yourself with new terminology and you will have the chance to ask member of the current care team questions making you feel more at ease going into the transition.

Every parent’s nightmare is anything bad happening to their child. To be faced with the prospect of a terminal or potentially terminal illness affecting your child can be somewhat overwhelming.

After you have received the diagnosis for your child a care plan should be drawn up and updated as time progresses.

This is by far the most difficult and testing time of the journey. You will need to be emotionally strong to face this stage and you should make decisions before you get to this stage for your child’s and your family’s needs.

You can never know how you will feel or react after your child’s passing. Most families we have spoken to describe the feeling as an emotional rollercoaster.

Throughout the many years we have been helping and talking to families of seriously ill children Happy Smile have become aware that many parents have the same questions and things that they don’t quite understand.

There are many ways you can help The Happy Smile Children’s Charity. You can become a sponsor or become a fundraiser or offer your services to other families.