Accessing Services

The long term effects of encephalitis may not be evident for some time. Some may show only years later, when your child needs to learn more complex skills or is dealing with more complex situations. Whether the problems are immediate or emerge much later, you will need to access the services that can help your child and your family. As a parent you know more about your child than anyone else. However, a range of experts from health, social services and education as well as voluntary agencies will be important partners for you over the coming months and years and will help you get the best support for your child. You should always feel able to ask questions or seek other opinions if you feel uncertain or unhappy with what they say. The provision of appropriate services is not the same in all areas and not enough in most. When making your request for help be persistent and assertive, but polite.

Below follows an overview of which services you should expect to be accessing, depending on the nature of the problems your child is experiencing.

Your child has significant difficulties immediately following the illness	Problems have emerged a short time after the illness	Problems have emerged a few years following the illness
Discuss with your paediatrician (hospital doctor) before discharge	Contact the secretary of your child's paediatrician (hospital doctor) and ask for a follow-up appointment	Discuss with your child's GP or community paediatrician (school doctor)

The problems are medical eg epilepsy, sleep problems
Your child needs to be referred to a paediatric neurologist for assessment and treatment. The referral can be made by your GP.

The problems are physical eg mobility or swallowing
Your child needs to be referred to a paediatrician who will refer on to the appropriate therapist. The referral can be made by your GP.

The problems are social eg there are care needs above that normal for a child of a similar age
Your child needs to be referred to Social services for an assessment of your child’s needs and an assessment of the main carer’s needs. The referral can be made by a GP, other health professionals or can be self referred.

The problems are behavioural e g mood swings, aggression, disinhibited behaviour
Your child needs to be referred to a clinical psychologist. The referral can be made by the hospital doctor, GP, community paediatrician, Child Development Team or CAMHS.

The problems are educational e g difficulty with new learning
Your child needs to be referred to an educational psychologist. The referral can be made by your child's teacher, GP or you can self refer.

The problems are emotional eg the child is distressed or has suicidal thoughts
Your child needs to be referred to the local CAMHS (Children and Adolescent Mental Health Service). The referral can be made by the GP or community paediatrician.

Specialists and Services

Medical Personnel

Family Doctor (General Practitioner, GP)
Your Family Doctor is usually the first person to get in touch with if you have concerns about your child. He/she can make arrangements for your child to see a specialist or other health worker. If possible choose a GP that you can talk to and who relates well, and listens, to your child.

Paediatrician
Paediatricians are doctors who have specialist qualifications in all aspects of children’s health and development. Much of paediatric medicine is practiced by general paediatricians working closely with children and their families and their work can take place both within a hospital or a community setting.

Paediatric Neurologist
Paediatric neurologists specialise in children with conditions affecting the brain.

Community Paediatrician / Community Child Health Doctor (School Doctor)
Community paediatricians monitor the health and development of school age children. They specialise in working with children with a wide range of special needs. A community paediatrician provides specialist services for children and adolescents with:

• Physical and learning disabilities
  
• Emotional and behavioural problems
  
• Chronic ill health
  
• Vulnerable children
  

They have a multi agency liaison approach working closely with social services and education.

Child Psychiatrist
Child psychiatrists are doctors who are expert in understanding how a developmental or neurological disorder can affect children's behaviour, emotional adjustment and social relationships. Child psychiatrists are expert in the use of medication in children with developmental or neurological disorders.

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Nursing Personnel

Health Visitor
Health visitors are specially trained nurses responsible for the promotion of the health and development of pre-school children. Concerns about developmental delay or other problems may be first raised with or by a health visitor during routine developmental assessment in the home or clinic, leading to referral on to other professionals.

School nurse
The school nurse may work with one or more schools, and provides an important link between the school and health services. The school nurse's particular interest and expertise is in relation to conditions that may affect children's ability to learn in school. She/he may be involved in health education programmes in school.

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Therapists

Physiotherapist (Physio)
The physiotherapist's work is to re-educate and teach new or alternative ways of helping children with movement difficulties. Activities may start with the gaining of head and body control and may in some cases extend to sports and recreational skills.

Referral is by your GP, community paediatician or hospital doctor.

Occupational Therapy (OT)
Occupational therapy focuses on assessing children’s life skills such as self care, access to school and play or leisure skills. They will help your child carry out everyday tasks like dressing and eating, and can recommend equipment to help them achieve these tasks. They are also able to assess “upper limb skills”, which would include handwriting ability and other school related activities, as well as attention and distractibility.

Community occupational therapists are employed by social services and they carry out assessments for families who need equipment and adaptations at home.

Referral is by your GP, community paediatician or hospital doctor.

Dietician
Dieticians will advise on your child’s nutritional needs and ensure that your child’s diet provides the nutrition needed, in a form that is attractive and palatable. This includes any special dietary needs that may be associated with eating difficulties. They can also provide valuable advice on weight control if this is an issue. Your GP, community paediatrician or hospital doctor can refer your child to the dietician.

Speech & Language Therapy (SALT)
Speech therapists (or speech and language therapists as they are sometimes called) are expert in the development of language and communication. They can help to promote language and communication in children with acquired brain injury. In addition, speech and language therapists also advise on assistive or alternative communication aid devices.

Speech therapists have specific responsibility for the assessment and therapeutic intervention at all levels for children/young people who have:

• swallowing and feeding disorders
  
• communication disorders
  
• written comprehension and expressive difficulties
  
• verbal comprehension and expressive difficulties
  
• difficulty interacting socially with adults and peers

Anyone in health or education can refer your child to a speech therapist.

Speech and language therapy vouchers available from Cerebra read more . . .

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Complementary Therapists

Complementary therapies includes treatments such as osteopathy, acupuncture, homeopathy, massage, reflexology and aromatherapy. Some parents have found these treatments useful. It can be difficult, though, to find out whether the practitioners have proper qualifications – often other parents are the best source of information, although some GP’s have an interest in this area of therapy or treatment. Many of the established forms of complementary treatments have their own governing body or college, which can advise about finding a well qualified practitioner. Occasionally, some form of complementary treatment may be available under the NHS but more usually it has to be paid for privately. Some practitioners will offer treatment on a sliding scale of payment.

We strongly recommend that you discuss with your doctor any alternative therapies, medicines or treatments before using them. Further details of specific complimentary therapies are available from the Encephalitis Society website and can be requested by post. Go to “Complementary Healthcare: a guide for patients”

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Psychology Services

There are two main psychology services available. One is Educational Psychology and the other is Clinical Psychology. Both services can plan strategies to help your child overcome or move forward from a particular problem, they can also help parents gain a much better insight into why your child is behaving as they are.

An Educational Psychology service consists of a team of educational psychologists who assess a child’s mental and cognitive abilities using specifically designed tests. They work with teachers, parents, children and other professionals at school and in pre-school settings. A part of their role is the preparation of the psychological advice for a statement (or Record in Scotland) for children with special educational needs. Your first contact with an educational psychologist, therefore, may be if you are entering the process of drawing up a statement. Alternatively a contact may be made from a teacher who needs advice. You will always be informed if this happens. Also it is possible to self refer to an educational psychologist if you have concerns. This service is available until your child reaches nineteen years of age.

Child clinical psychologists work to increase understanding of how the child’s medical condition and acquired brain injuries impact on learning, behaviour, social and emotional functioning, and ability to adapt to new ways of doing things. Through one-to-one assessments; observations and group working, information and advice are given to parents, carers, teachers and professionals working with the child, to enable them to support the child and to give them new approaches and ways of overcoming difficulties. Children may also receive individual psychotherapy and counselling to help them to understand what has happened to them and the way it makes them feel. Clinical psychologists usually work as part of CAMHS (Child and Adolescent Mental Health Service).

Neuropsychology is a specialism of Clinical Psychology and looks at how a brain injury may have affected your child’s thinking skills and behaviour. The neuropsychologist can identify where your child’s strengths lie – what they can do well – and which functions your child is having problems with; and can advise on ways to manage those difficulties.

A neuropsychological assessment may be carried out by a neuropsychologist or a chartered clinical psychologist, who specialises in child psychology. It involves gathering appropriate information such as the history of the illness and conducting various tests to examine how specific functions of the brain are working. You will receive a report containing a detailed profile of your child’s strengths / weaknesses, an opinion and recommendations to help the education and rehabilitation of your child. It gives a snapshot of your child, thus enabling you to chart future progress or deterioration. It can be presented as expert information when statementing. It can also be used in a positive way if you are having problems accessing a particular service. The Assessment can be requested by your GP, hospital doctor or community paediatrician, or you can fund it privately.

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Community Services

Child Development Centres (Child Development Team)
Provide a range of services to support pre-school children who have developmental delay and older children with physical and intellectual difficulties. A team, consisting of therapists, psychologists, doctors and nursing specialists, work with families and community colleagues to determine the type of help each child will require. This may be individual therapy or group sessions together with practical advice and information. As each child develops, the support will be reviewed with parents/ carers and changed as necessary.

Referral is by a GP, hopital doctor or consultant paediatrician but other health professionals may also refer.

Child and Adolescent Mental Health Service (CAMHS)
Specialist Child and Adolescent Mental Health Services are part of the National Health Service. They provide assessment and treatment to young people and their families where there is concern about emotional, behavioural or mental health problems.

CAMHS usually consists of a mutli-disciplinary team, including some or all of the following: child and adolescent psychiatrists, child clinical psychologists, child psychotherapsists, social workers and community psychiatric nurses.

A referral to CAMHS can be requested by your GP, but some services also accept referrals from parents and from young people themselves. In some areas other professionals such as social workers and teachers may also be able to refer to CAMHS.

Further details at www.everychildmatters.gov.uk/

Portage
Portage workers have particular expertise in working with parents of pre-school children, helping them with developmental difficulties using a home teaching method devised in Portage, Wisconsin in North America. See Provision for children under 5 in Pathways through Education/Provision for your child under 5. A referral can be made by your GP or health visitor.

Social Services
The people working for social services are there to give you advice and, if appropriate, support if you are experiencing difficulties coping with your child. The Children with Disabilities team offers advice and support to meet the assessed needs of children with disabilities and their family. These services may include

• Family support
  
• Liaison with other agencies
  
• Speaking or writing on behalf of a child or family
  
• Home care
  
• Special equipment and home adaptations
  
• Specialist childminding, special provision playgroup or summer holiday play schemes
  
• Respite care – either within a family or residential setting. This could be when someone comes into your home while you go out, day care in a carers home, overnight, a weekend stay or other short breaks away
  
• Shared care provided by some carers on a regular basis
  

Social workers work very closely with other services such as community nurses, health visitors, schools and voluntary groups. Contact a Family provide further details in their guide “When a child has additional needs” www.cafamily.org.uk/