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The Encephalitis Society - Neuropsychology Service

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The Encephalitis Society Neuropsychology Service aims to help adults (aged 18 and above) who have been ill with encephalitis, and their carers gain access to neuropsychological support by:

1)    Providing help with accessing local statutory services

2)    Offering a range of neuropsychological assessment and therapy services more directly

Sometimes there are services in your area that are able to meet your needs very well, but you, or those around you may not be aware of: how to explain your needs, the existence of potentially appropriate services and/or how to access them.

Therefore, in the first instance, we aim to provide you with information about the kinds of services that may be of benefit to you, as well as help you gain access to these. Where appropriate this might involve contacting your GP.

For those that do not have appropriate services located near to where they live, or for whom there is a long waiting list (i.e., greater than four months), a referral to The Encephalitis Society Neuropsychology Service will be considered.

The Encephalitis Society Neuropsychology Service provides support to those affected by encephalitis across the UK. In order to cover this large geographical area, flexible methods of service delivery are used. This includes conducting therapy sessions via the telephone, using videoconferencing (i.e., Skype) and meetings taking place in regional locations near to people’s homes. Some sessions are conducted at home or at our office in Malton. The option/s used take into consideration a number of factors and arrangements are made in accordance with what is appropriate for individual circumstances.

Services include:

  1. Cognitive Assessment
  2. Cognitive Rehabilitation
  3. Therapy
  4. Behaviour Management
  5. Capacity Assessment
  6. Consultation
  7. Expert Witness Reports

Types of Service

Types of service offered by the Encephalitis Society Neuropsychology Service

1.    Cognitive Assessment

This is an assessment of thinking skills such as attention and concentration, memory, and problem solving abilities. An assessment of this nature helps to improve understanding of strengths and weaknesses in thinking skills after being ill with Encephalitis. It can also help to determine which strategies might be useful for helping to manage everyday tasks such as shopping, studying or returning to work.

2.    Cognitive Rehabilitation

Cognitive rehabilitation involves introducing strategies that might be useful for managing thinking problems. Examples of strategies include the use of ‘compensatory aids’ such as a diary, alarm or camera for helping to minimise the impact of problems with memory.

3.    Therapy

Psychological therapy involves developing an improved understanding of problems and implementing techniques for improving cognitive, behavioural and emotional functioning. The aim is to help people engage in roles and relationships that are important to them. After being ill with Encephalitis therapy might involve:

  • Improving insight into the nature of problems experienced
  • Managing low mood
  • Reducing stress and anxiety and improving confidence
  • Improving anger management
  • Promoting assertiveness
  • Adjusting to difficulties and achieving acceptance of changes

We recognise that Encephalitis impacts not only on the person that was ill but also on their loved ones. For this reason we provide psychological support to carers affected by Encephalitis. We also offer relationship counselling.

4.    Behaviour Management

When more seriously affected after being ill with Encephalitis, it can be difficult for people to manage their own behaviour. They may not recognise, for example, the full extent of their difficulties with aggression or disinhibited social behaviour, including associated risks posed to themselves and the impact of their behaviour on others. In such cases, instead of working with the person affected by Encephalitis, it may be more appropriate to work with the individuals’ loved ones and/or paid carers to help devise strategies for managing these behaviours.

5.    Capacity Assessment

For some, decision-making ability is adversely affected after being ill with Encephalitis. Capacity Assessment involves evaluating an individual’s ability to make certain decisions such as regarding their finances, where to live, or how to instruct a solicitor.

6.    Consultation

Consultation can be helpful to assist individuals and their families/ carers understand the problems displayed by a person who has been ill with Encephalitis, as well strategies that may be useful for managing problems. Consultation might involve providing specialist advice to staff in residential facilities.

7.    Expert Witness Reports

We specialise in completing expert witness reports for people who have experienced Encephalitis and are pursuing a compensation claim. More information about this can be obtained by contacting the service.

How are we funded?

We predominantly rely on charitable donations for running The Encephalitis Society Neuropsychology Service. This is supplemented with money obtained from medicolegal work undertaken.

Cost of accessing the service

We recognise that many people with Encephalitis and their carers may find it difficult to contribute to the costs of neuropsychological support (both assessment and therapy) due to a range of factors including, for example, the impact of the illness on their ability to work. Others are in a more fortunate position. Currently, we are endeavouring to provide neuropsychological support for free. However, we do accept donations and hope that you will make a contribution if you feel able to – especially if you feel that we have done a good job!

However, if you have a compensation claim relating to Encephalitis (i.e., a medical negligence claim) then there will be fees associated with accessing the service. You should contact us to discuss this further in the first instance.

We are planning to run a pilot of the Encephalitis Society Neuropsychology Service for approximately six months, after which time we will need to evaluate the viability of the service remaining free for access in the longer-term. We also plan to collect the views of our members as this is very important to us.

How do I obtain referral to/ refer to the service?

There are a number of ways that people can be referred to the service. These include:

  • Referral from all health and social care professionals (e.g., GP, Social Worker)
  • Medicolegal referrals (e.g., Case Manager, Solicitor)
  • Self-referral

Please download a copy of the referral form.  If you are making a self-referral, please contact our support line to obtain assistance with completing the form on: 01653 699 599.

For your convenience, a copy of our referral criteria can be found below.

Referral criteria

Referral criteria for accessing the service are listed below:

  • Encephalitis as primary diagnosis (all subtypes)
  • Medically stable
  • 18 years and above
  • UK resident
  • Member of The Encephalitis Society (it's free and you can sign up here)
  • Neuropsychological needs must relate directly to the experience of encephalitis
  • Neuropsychological needs cannot be met by statutory services or waiting list for statutory service exceeds four months
  • Needs cannot be better met by an alternative service (e.g., Mental Health Services, The Encephalitis Society Support Line, Social Services)
  • Must be able to engage in, tolerate the intensity of, and benefit from neuropsychological support (except when intervention is being delivered via carer)
  • Is willing to consent to assessment/intervention, or if not able to consent it has been established that the assessment/intervention is in the person’s best interest
  • Carers of adults with encephalitis can access the service if: distress experienced relates directly to the experience of encephalitis and needs cannot be better met by an alternative service or waiting list for alternative service exceeds four months

If you meet the above criteria, please download a referral form or alternatively call the office on 01653 699599. 

Note: Unfortunately, at this point in time we do not offer direct neuropsychological support to children with encephalitis and their parents as they are typically supported by Child Neuropsychologists. We do, however, assist with identifying local services that may be able to help. This is an area we are hoping to expand into in the future.

FAQs - Frequently Asked Questions

What does a Neuropsychologist do?

A neuropsychologist specialises in providing psychological support to people who have experienced brain injury. This might include conditions such as traumatic brain injury, stroke, or encephalitis. As well as helping people manage difficulties with their emotions (e.g., adjusting to changes in identity, anxiety and depression) or problematic behaviours (e.g., increased aggression or difficulties with social skills), neuropsychologists assess how people’s thinking skills (e.g., concentration, memory and problem-solving) might have changed as a consequence of their brain injury.

Psychological support might be provided directly to the individual with the brain injury or to people in their support network, such as their partner, parents, or support workers. Support may take the form of one-to-one sessions with a psychologist, or implementing strategies and environmental changes suggested. The overall aim of psychological support is to minimise the impact of difficulties on everyday life.


Why might I need to see a Neuropsychologist?

It is useful to see a neuropsychologist if you feel that you are having difficulty coping since experiencing encephalitis. This might include difficulties with your memory, managing your temper, and/ or feeling sad and low a great deal of the time. It is particularly useful to see a neuropsychologist if these problems are having a negative effect your relationships, make it hard to do everyday things such as manage your household, work or study, or if these problems place you at significant risk (e.g., forgetting to turn the cooker off or finding yourself in debt).


How do I go about seeing a Neuropsychologist?

There are a number of ways you can arrange to see a neuropsychologist. If you are still being seen by a neurologist, you can ask them to refer you. You can also ask your GP to make a referral. In some areas there is good access to neuropsychological support through the NHS and in other areas there is not.

If there is no neuropsychological support for you to access in your area or if you need to wait for longer than four months to access this support, then you or a professional can complete the referral form to ascertain whether it is appropriate for you to obtain neuropsychological support from The Encephalitis Society. This form is on The Encephalitis Society website and can be completed online or else downloaded and completed (add link).

The reason that we suggest you try to access neuropsychological support through an NHS service in the first instance is that The Encephalitis Society Neuropsychology Service is a National Service so demand may be high and access to the service will therefore be limited. Also, a local service may be able to offer a service more flexibly suited to your needs.  In addition The Encephalitis Society Neuropsychology Service is intended to meet gaps in service provision, not to replace services where they already exist, and work well.


You provide a Neuropsychologist but my child cannot see them, why is this?

Neuropsychologists usually specialise in working with either adults or children. Our neuropsychologist has expertise in working with adults (aged 18 and above). If your child requires support from a neuropsychologist, or if you feel that you are struggling to manage your child’s difficulties, and/or your own feelings after their illness, you should discuss this with your GP and/or neurologist who may be able to refer you to an appropriate alternative service providing neuropsychological support.  We hope over time to expand our service to include children and their parents however at the moment we do not yet have that facility.


My encephalitis event was when I was a child, can I access neuropsychology now?

Yes. If, as an adult, you are experiencing difficulties as a consequences of having had encephalitis as a child, you may be able to access The Encephalitis Society Neuropsychology Service. Some examples of the kinds of difficulties you might be experiencing include memory problems affecting your work or difficulties within the context of social relationships. However, if it became apparent following further investigation that your difficulties were attributable to issues other than experiencing encephalitis, or that the help you required was not necessarily of a neuropsychological nature, it is likely that you would be referred on to a more appropriate service instead.

 

I have seen a Neuropsychologist already, can I see one again?

If your difficulties relate to encephalitis and you would benefit from seeing a neuropsychologist again then you would be considered for additional input from the neuropsychologist working for The Encephalitis Society.


I think my problems are getting worse, is it worth me seeing a Neuropsychologist?

It depends on what your problems are caused by. If you are medically stable and you have difficulties with your emotions or with your thinking skills, it might be useful seeing a neuropsychologist. The best thing to do would be to speak with your GP about this in the first instance or your neurologist if you are still under their care. You could then be referred to a local NHS-based neuropsychologist if appropriate or alternatively to The Encephalitis Society neuropsychologist.


My husband has returned to work two years ago. He is only just coping and we wondered if he might benefit from psychological support?

If the difficulties experienced at work relate to problems secondary to encephalitis then a referral for neuropsychological support might be useful. For example, it might be appropriate for a cognitive assessment to be completed to help ascertain whether changes in thinking skills such as poorer concentration or memory are impacting on his ability to complete tasks at work. Alternatively, referral to a neuropsychologist would be appropriate if his emotional functioning (e.g., stress) is impacting on work performance.


My Son is 17 and in transition, would an adult Neuropsychology referral be appropriate?

At this point people 18 and above can access The Encephalitis Society Neuropsychology Service.


My wife is due to see a neuropsychologist but it’s a 5 month waiting list, can she see The Encephalitis Society Neuropsychologist?

If it meets their needs, adults can access the Encephalitis Society Neuropsychology Service if they have been advised that they need to wait four months or longer to see an NHS-based neuropsychologist.


If I use the Encephalitis Society Neuropsychologist will my information be shared with other professionals, for example my GP?

It is usual practice for a neuropsychologist to share information about the nature of help provided to you with the person that referred you to the service, and this might be the GP. This helps to ensure that that there is good communication between professionals and maximises the quality of care you receive. However, the information shared with the neuropsychologist can only be shared with other professionals with your consent, except in certain circumstances. These circumstances include: if you share information which suggests that you, or someone else, including a child might be at significant risk of harm; or if the neuropsychologist receives a subpoena from a Court of Law.


Will I get reports from The Encephalitis Society Neuropsychologist? Will I have to pay for them?

You would usually receive a report following your assessment and then after your intervention with the neuropsychologist has been completed. You would only pay for these reports if you are receiving neuropsychological support in relation to a compensation claim.


Does the Neuropsychologist working for The Encephalitis Society have access to my NHS medical records? Will they need specific consent and will the NHS freely provide them.

The neuropsychologist can only access information from your NHS medical records if you give consent for this. You would usually be asked to provide written consent following discussion during the first meeting. This is because obtaining information about your history helps to tailor neuropsychological support to your needs. The NHS will usually provide information from your medical records if you have provided written consent.


What happens if I were to become distressed during an assessment or develop problems later on?

If you are feeling anxious or distressed you should share this with the neuropsychologist who will do their best to address your concerns and/or help you to decide how best to proceed.


Will other people be present during my meeting with The Encephalitis Society Neuropsychologist?

Not necessarily, this will depend on the situation. Sometimes it will be better for you to attend alone and on other occasions it may be useful to have someone who knows you well accompany you to an appointment. Being accompanied can be useful for helping to get a thorough picture of your difficulties, and in some cases is also beneficial for helping you to manage problems. It is usually advisable to have someone who knows you well come along to the initial session and to discuss what the best options are moving forward after this.


Can I have someone with me during my assessment or meetings?

This will be appropriate for some sessions but not others. It is often useful to have someone that knows you well attend the initial session to help the neuropsychologist obtain a thorough account of your difficulties. It may also be appropriate to have someone attend sessions so as to help support you in managing your problems. However, some sessions are better attended by you alone. Examples include sessions in which an assessment of your thinking skills is being undertaken or sessions in which you are working toward improving your independence. If you have concerns about attending sessions independently, you should discuss these with the neuropsychologist at the initial meeting.


Will I need to pay anything towards an Encephalitis Society Neuropsychologist’s meeting?

Currently access to the service is free and you won’t need to pay for the sessions that you attend with the neuropsychologist unless your sessions relate to a medicolegal claim. Of course, we never turn down donations towards our work if you are happy with the services you have received and would like to contribute. If you are having trouble accessing the service due to financial constraints (e.g., costs of travel), The Encephalitis Society will decide whether assistance can be provided with this on a case-by-case basis. Any costs would be clarified before arranging an appointment.


Would private health care insurance cover Neuropsychology?

In the event that you are charged for your sessions, you would need to check this with your insurance company.


I am living outside of the EU can I access your Neuropsychology service?

Unfortunately it is not possible to access the neuropsychology service if you live outside of the UK. This is because the neuropsychologist cannot legally provide support to people living in other countries. You can, however, access our Support line for help and information as the same restrictions do not apply to the Support Service more broadly.


I am living within the EU can I access your Neuropsychology service?

Unfortunately it is not possible to access the neuropsychology service if you live outside of the UK. This is because the neuropsychologist cannot legally provide support to people living in other countries. You can, however, access our Support line for help and information as the same restrictions do not apply to the Support Service more broadly.


I am detained in the criminal justice system will I be able to access the Neuropsychology service?

It may be appropriate for someone detained in the criminal justice system to be referred to The Encephalitis Society for specialist input from the neuropsychologist, for example, in the event of specialist assessment of thinking skills being required. However, each referral to the service will be considered on a case-by-case basis, taking into account what other alternative local neuropsychological services are available.


My Encephalitis occurred 5 weeks ago and I need to see someone, can I access your Neuropsychology service?

It would be useful to contact our Support Line to discuss this in the first instance as it may be that it is too soon after your illness to access neuropsychological support. Whether or not you can access the neuropsychology service will depend on whether it is considered beneficial for you. This would include consideration of whether you are medically stable as sometimes what appear to be psychological symptoms have a medical cause, and are best treated medically. It would also depend on whether you are eligible to access alternative neuropsychological services local to you.


My Dad is 85 and in a specialist care home and I don’t think it’s the right place for him can your Neuropsychology service help?

It would be useful to contact our Support Line to discuss this in the first instance. Whether or not our Neuropsychology service can help would depend on the reasons the care home is considered inappropriate. If it is felt that more independent living should be considered then an assessment of his thinking skills by a neuropsychologist might form part of a broader assessment. However it may be more appropriate for this assessment to be completed by a local NHS-based service, particularly if assessment by multiple professionals (e.g., neuropsychologists, occupational therapists, physiotherapists) is required. 

 

Supported By: 

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The Encephalitis Society is the operating name of the Encephalitis Support Group which is a registered Charity and Company Limited by Guarantee.

Registered in England and Wales No. 4189027. Registered Office as above. Registered Charity No. 1087843.