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, where end of life care is provided and who might be involved in end of life care.

Hospital

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.  

Children’s Hospice

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

Address: Old Portsmouth Road, Artington, Guildford, GU3 1LP

Phone: 01483 230960

See Shooting Stars 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. 

Home 

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).  

Art therapist

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. 

MindWorks Surrey

MindWorks Surrey is an emotional wellbeing and mental health service for children, young people, parents and carers, and professionals across Surrey. The MindWorks Surrey Access and Advice service is replacing the CAMHS Single Point of Access (SPA). They 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.

Community paediatrician

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.

Consultant paediatrician

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.

Health visitor

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.

Music Therapist

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.

Play specialist 

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.

School nurse

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.

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.

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.