Who are the professionals?

Various healthcare professionals will be involved in your recovery and rehabilitation after encephalitis. Their roles are described below.

Neuropsychologists are trained in understanding brain-behaviour problems. Referral to a neuropsychologist may be useful for:

• assessing thinking skills with a view to managing cognitive problems (e.g., difficulties with attention and memory)
• assessing an individual’s capacity to make complex decisions (such as where to live)
• therapy and other interventions for managing problems with emotion and behaviour

Occupational therapists support people to engage in activities that are important to them. Referral to an occupational therapist may be useful for:

• assessing abilities and supporting an individual to maximise independence in relation to simple (e.g., personal care) and complex (e.g., managing finances) activities of everyday living
• helping someone become involved in leisure-based activity
• supporting people to go to college or return to work
• considering what aids/equipment might be useful for helping someone maximise their independence and fulfil their goals.

Neurophysiotherapists help and treat people with physical problems secondary to neurological conditions. Referral to a neurophysiotherapist is useful for assessing and addressing:

• problems with movement, such as difficulties with mobility and dexterity and/or sensory changes (i.e., numbness, pins and needles)
• advice regarding pain management

Other specialist services and professionals to consider might include:

• Speech and language therapists specialise in assessment and management of problems with communication, eating, drinking and swallowing.
• Neurologists —for concerns about relapse, advice about medication, management of seizures and for referral for brain scans
• Rehabilitation Medicine Consultants— for advice about rehabilitation
• Neuropsychiatrists —for management of problematic emotion and behaviour
• Epilepsy nurse specialists – for management of epilepsy
• Pain management services – for advice regarding pain
• Continence Services – for advice about continence management
• Psychosexual clinics – for management of the combined impact of physical and psychological aspects of sexual dysfunction
• Ear Nose & Throat Specialists/ Audiologists/Opthalmologists – for managing sensory problems
• Endocrinologist/Neuroendocrinologist – for management of hormonal irregularities
• Immunologist – in the event of problems with immunity
• Dietician – to assess nutritional needs and recommend appropriate treatment
• Social services/Mental Health Crisis Teams assist with social issues such as arranging care, respite or residential placement, or when there are concerns about risk posed to the patient or others.

 Complementary therapists

Complementary therapies include treatments such as osteopathy, acupuncture, homeopathy, massage, reflexology and aromatherapy. Many of the established forms of complementary treatments have their own governing body or college, and you are strongly advised to contact them if you are thinking about finding a qualified practitioner.  Often other people who have used their services are the best source of information, although some GP’s may have a specialist interest in this area. Occasionally, some form of complementary treatment may be available under the NHS but more usually it has to be paid for privately.  You are strongly recommended to discuss with your doctor any alternative therapies, medicines or treatments before using them.

Referral to professionals

Some of these professionals often work together in multidisciplinary teams to provide support following acquired brain injury (ABI) both in the community and outpatients settings (e.g. NHS Community Neurology Rehabilitation Teams, NHS Community Brain Injury Teams). However, in some regions the health professionals listed above work independently of each other.

Depending on where you live, you may be able to access these specialists for free via NHS services. The best thing is to speak to your GP or neurologist in order to obtain a referral to these services. If there is no local statutory services available, another option is to pay to see professionals on a private or fee-paying basis.

Private practices

Information about private practitioners can be found on the following websites:

• The British Psychological Society
• The Chartered Society of Physiotherapy
• The College of Occupation Therapists
• Association of Speech and Language Therapist in Independent Practice (ASLTIP)
• British Dietetics Association (BDA)
• The British Association for Counselling and Psychotherapy
• College of Sexual and Relationship Therapists

Getting the best out of the meetings with professionals

Many people are nervous about talking to those who have a degree of control over their lives or the lives of those they care for. There may be additional difficulties following encephalitis, perhaps with communication or memory that you or your loved one may now face. Don’t see professionals as the enemy – they are just ordinary people who have some extra training.

Identifying your difficulties

Keep a diary of your difficulties, their pattern and how they affect your life. Try using a numbering system, for example you could say that ‘on a scale of 0 to 10 (0 being the least pain and 10 being the worst) I was having a 9 headache before the medication you gave me and now I am having a 5. Take this diary to your meeting with professional.

Build a good relationship with your doctor by talking openly and honestly

Whilst it is important to discuss your problems it is equally important to acknowledge progress. However, it must be understood that some of your problems will not be cured with a simple pill, just one appointment or a few therapy sessions.

Prepare for your meetings

Arrange the meeting if possible and ask where you will meet (e.g. hospital, your home), what will you discuss and who will be there. Before the meeting think at what you want to say and bring at the meeting. Don’t forget to bring your diary and ask somebody to come with you a moral support or for making notes of the meeting.

At the meeting:

• Keep it simple.
• Stick to the topic.
• Keep checking your notes.
• Be honest.
• Listen to what is said and take notes.
• If you don’t understand ask them to explain.
• Ask if you can have some time to think about any decision.
• Ask about alternatives to any treatments.
• Ask for any information that you are unsure about to be given in writing.
• Keep a record of all your meetings.
• You can ask to be copied in on any letters sent out.
• Ask that another time and venue be arranged if necessary.
• Try and end the meeting on a friendly note.

If things go wrong:

• Don’t get angry, take some deep breaths or ask for a short break.
• Don’t blame, focus on finding a solution instead.
• Say you are not comfortable with their decision and ask for a second opinion.