Time of diagnosis
As a parent carer there will be lots of things to think about when you are told your child has a life limiting or life threatening condition, including:
Getting a diagnosis
If you have just heard the news that your child has a life-limiting or life-threatening condition you will be in a state of shock and feeling overwhelmed. As well as feeling extraordinarily emotional you will have lots of questions, such as:
- How do I tell my child about their diagnosis?
- How do I tell others in the family?
- What will the future look like for my child?
- How will it impact on my child and others in the family, particularly any siblings?
- How can I make sure my child and family have as normal a life as possible?
- How can I cope physically and emotionally?
A diagnosis should have been given to you via a face to face meeting in privacy and with someone there to support you. You should have been given the opportunity to ask questions about the diagnosis and prognosis and to have any concerns you have addressed. If this is not the case or if you have already been given a diagnosis but you feel it would be helpful to talk to the doctor at a follow up appointment then it is important that you ask for this as soon as possible.
Things to think about
- Ask for some allocated time with the doctor for an open and honest face to face discussion in a private room.
- Make sure you are not alone at the appointment. Take your partner, relative or friend with you.
- Jot down some questions to ask the doctor in advance as it is easy to forget what you need to know during the appointment. It is also helpful to jot down some notes during your discussion or ask the doctor to jot them down for you.
- Ask for written information to take away with you in a language which is easy for you to understand. Ask for an interpreter if necessary.
- Ask for information about support groups and available emotional support for yourself and your family in your local area.
- Consider who and how you are going to tell others outside the immediate family, for example school, wider family and friends. How might you need to prepare yourself for their reactions?
Discharge from hospital
It is likely that your child will have been diagnosed in a hospital setting. The time that your child is able to return home will vary depending on the nature of your child’s illness. It may be your child needs immediate medical attention following diagnosis or your child may be able to go home straight after diagnosis. Whenever is the right time for your child to be discharged home there will be a number of things that you will need to be aware of:
- Planning for transfer from hospital should start as soon as possible. As part of that process there should be an initial assessment meeting involving you and key staff supporting your child. This is likely to include hospital staff, community health staff, social care workers, your GP and you and immediate family. You, your family and your child’s needs should be discussed and a plan drawn up to enable your child to return home safely.
The following issues should be covered within a transfer plan:
- Key worker to coordinate your child’s care.
- Deciding where you want your child to be cared for.
- Risk assessment of your home and what needs to be put in place to minimise the risks eg. aids and equipment.
- Needs assessments from relevant services leading to a plan to meet your child’s health and social care needs on a 24 hour, 7 days a week basis.
- How to access medical advice on symptom control on a 24 hour, 7 day basis and in an emergency
- You know who to contact when needing professional help and how to contact them and making sure relevant professionals know how to contact you
- How to look after yourself and your family through the provision of emotional support, spiritual and cultural support, transport, training and very importantly short breaks.
Things to think about:
- Make sure an appropriate transfer plan covering the above issues has been agreed with you before your child is discharged. As part of this planning process ensure you have a lead community children’s nurse or other named key worker and that your GP and other community health services have been informed and a shared care plan is in place.
- Ensure any equipment, medication and supplies that you need to care for your child have been provided before your child is discharged home.
- Check that any necessary transport arrangements are in place.
- Make sure you receive all the training you need in order to care for your child. It’s important that your child is safe and your own health is protected.
- Check you know who to contact and how in different situations and in an emergency 24 hours/7 days a week.
- Check there will be a home visit following discharge and who will undertake this. You should get a home visit within the first 3 days of discharge.
- Make sure other children in your family are not forgotten. They will also need lots of support to understand what is going on at such a difficult time.
Finding out who can help and where
As well as having lots of questions about your child’s diagnosis and prognosis you will also find yourself thrown into the ‘deep end’ of the medical and social care world, including medical ‘talk’, different professional titles, equipment and medicines. To get you started here are a few brief descriptions of where care can be provided and who can provide specific child care services. You can find more general information relating to end of life care, including professional roles, by going to Time to find out the facts.
Palliative and end of life care for children in paediatric wards or children’s hospitals is a vital part of the network of services supporting children with life limiting conditions. The inpatient team is in the unique position to early identify a child’s illness across the age and diagnostic spectrum where there could be benefit from palliative care. The team can also ensure an integrated ongoing approach to your child’s treatment and care as well as family support by liaising effectively with local community support.
As well as providing specialist nursing care and short breaks on site (often referred to as ‘respite care’), a children’s hospice will provide specialist nursing care in the family home, symptom management, end of life care and bereavement support. Tailored support is free of charge to families and includes a named key worker and a comprehensive range of therapies and support groups for the whole family.
In Surrey your local children’s hospice is:
Christopher’s Children’s Hospice
Old Portsmouth Road
01483 230960Go to the Shooting Stars website for further information.
You can make your own referral direct to Christopher’s but it can also come from a professional e.g. your GP, the hospital, a consultant, community nursing team, provided it is with your knowledge and consent. The team at Christopher’s then assess the needs of your child and, after obtaining your written consent they will gather further information about your child’s condition from the professionals they see regularly. Each week St Christopher’s staff hold a multi-disciplinary referral panel, where they will look at the information provided and decide together if your child fits the referral criteria. If your child is refused, they will always reconsider a further referral if their condition changes or new information becomes available. Similarly, there is a regular review of each child they support. The referral process can take a minimum of two weeks unless it is an emergency in which case the referral can be dealt with in a matter of hours.
If you choose to care for your child at home, you should be fully supported to do this. You should be able to have home visits from paediatric nurses (who care for children) when you need help, at any time of the day or night. You should also be offered advice whenever you need it (this might be over the phone) from a doctor specialising in palliative care. Home visits from a palliative care professional to manage your child’s symptoms. Practical support, for example equipment to give oxygen and medicines to your child, medicines to store at home (and training in how to store them) so that if your child develops certain symptoms these can be treated quickly (called anticipatory prescribing).
Will use the process of self-expression, and the resulting artwork to help your child understand their emotional conflicts, develop social skills, improve self-esteem and reduce anxiety.
Child and adolescent mental health team (CAMHS)
Surrey and Borders Partnership Trust have a number of community CAMHS teams working across the county and are made up of health and social care professionals, including psychologists and psychiatrists. They promote good mental health and provide assessment and treatment to children and young people up to the age of 18 with mental health problems.
Referrals can be made by all health, social care and education practitioners.
Community children’s nurses
Provide specialist nursing care to children at home and will often act as a child’s key worker. They will give specialist intervention for children and young people who have a life limiting illness requiring treatment, symptom control or end of life care. For the team locations and contact details in Surrey.
A senior children’s doctor, commonly a consultant, will work closely with other doctors and medical staff to ensure your child’s medical needs are managed and supported in your home.
A consultant paediatrician in a general hospital will be a children’s doctor but may not be a specialist in your child’s condition. A consultant in a specialist hospital will be a children’s doctor with expert knowledge in the condition of your child. Depending on the condition and how rare it is you may find you have to travel out of Surrey to get the necessary specialist medical treatment for your child.
Provide health education and health promotion advice, but can also provide supportive care to you and your family. Check with your local GP surgery to see if there is a local health visitor who has specialist experience and expertise in supporting a young child and their family with a life limiting condition.
Will use music to help improve your child’s wellbeing and reduce stress. Your child will be encouraged to use different instruments as a way of building their confidence and to use their voices to explore sounds and express their emotions.
Helps your child to make sense of what they are experiencing through the activity of play. Play is a natural way of a child communicating therefore with a play specialist they can communicate issues that worry them which they might find difficult to express in other ways.
Every school should have access to a named school nurse. Some schools have their own school nurse. They provide health promotion and education to the children in the school. These nurses are able to give medication and care to your child whilst they are at school. In Surrey they may also have a lead ‘champion’ role for young carers in the school so they may be able to provide emotional support to other children in your family.
Social Care Worker
Children’s Social care teams have a legal duty to support children and families who are at risk of harm or who need significant additional support to meet their child’s health and development needs. If you have a child who has special educational needs or disabilities, they may be able to offer your family additional support. An assessment of your child’s needs will be carried out by a social care worker and you as a parent carer are also entitled to a carer’s assessment to think about your own support needs – this may include benefits advice, help in the home and services that give you a break. A professional involved with your family can make a referral to Children’s Services, either at your request or if they feel it would help your family. Surrey Children’s Services will know what is available in Surrey to help you and your family.
Speech and language therapists
They will assess your child’s communication abilities and offer support if required. They will also help your child with any swallowing difficulties.
Talking to your child about their diagnosis
Coming to terms yourself with the news that your child has a life limiting or life threatening condition is difficult enough. Having to tell your child may seem even more devastating and you may be inclined to delay the conversation on the basis that it is protecting them. However, it is generally better to talk to your child sooner rather than later.
Talking to your other children
The likelihood is that other children in your family will know something is wrong so although you may feel it is better to keep a diagnosis of brother or sister hidden from them, it is probably best to tell them sooner rather than later. For guidance and advice on how to talk to siblings and provide support to them go to the ‘Together for Lives’ website.