Guillain-Barré Syndrome (GBS) | Advice for Carers 

Hospital discharge can bring mixed emotions. Of course you’re glad to have your family member home, but it is quite normal to feel a bit daunted by what lies ahead, especially if you are now the main carer. On this page we have some practical suggestion that can help you in this new role, and some help contact details and/or resources you may wish to access.

Ask for a needs assessment for the person you’re caring for

 

You need this before the council can recommend services such as equipment, home adaptations, help from a paid carer, etc

 

Get a carer’s assessment

 

This can be requested at the same time as a needs assessment, via social services at your local council

 

Don’t be afraid to

ask for help

 

Ask family and friends (shopping, respite, etc), and contact carers’ organisations or Citizens Advice for benefits advice and other support

 

Look after yourself

 

Eat a healthy diet, maintain a regular sleep pattern and make time for exercise, preferably in the fresh air or at your local gym or pool, away from the care setting

 

Remember to rest

 

Put some activities on hold. Take some time for yourself by arranging respite care from a friend or relative, or through social services

 

Recognise limitations

 

Both those of the person you’re caring for and your own. Let them try to do things for themselves if they are able, but bear in mind their safety and yours

 

Look after your

mental health

 

Talk to each other about your experiences and frustrations during illness and recovery. Talk to your GP if either of you is struggling

 

Be mindful of risks

 

Be aware of temperature (cooker, iron, hot bath water, hot drinks), risk of falls due to poor balance, and dropping or spilling things due to weakness

 

Diet & exercise

 

If appetite and taste are affected, ask about vitamin supplements to help maintain dietary needs. Ask the community physio about exercises to do between visits

 

Don’t lose sight of your relationship

 

Whatever your relationship is to the person you’re caring for, make time for it. Do things together that you both enjoy and that feel ‘normal’

 

Get in touch with GAIN

 

We provide information and support, organise peer support via phone or video link, virtual group chats, and run an active and supportive Facebook group

 


Looking after someone you love doesn’t have to mean struggling alone. There are organisations out there who offer advice and practical support to carers, so reach out and see what help is available to you.

Other sources of support CARERS

NHS advice

 

https://www.nhs.uk/conditions/social-care-and-support-guide/support-and-benefits-for-carers/

 

Carers UK

 

https://www.carersuk.org/

 

Carers Scotland

 

https://www.carersuk.org/scotland

 

Carers Wales

 

https://www.carersuk.org/wales

 

Carers Northern Ireland

 

https://www.carersuk.org/northernireland

 

Family Carers Ireland

 

https://familycarers.ie/

 

Carers Trust

 

https://carers.org/

 

Help for young carers

 

https://youngminds.org.uk/find-help/looking-after-yourself/young-carers/

 

Citizens Advice UK

 

https://www.citizensadvice.org.uk/

 

Citizens Information RoI

 

https://www.citizensinformation.ie/en/

 

Find your local

social services

England

https://www.nhs.uk/service-search/other-services/

Scotland

https://www.mygov.scot/find-your-local-council/

Wales

https://111.wales.nhs.uk/localservices/

Northern Ireland

http://online.hscni.net/social-services/

Republic of Ireland https://www.hse.ie/eng/services/list/4/

Welcome to our Guillain-Barré Syndrome Information Hub.

Here we breakdown what is happening to you or a loved in simple but proper terms. Our information is sourced from our Medical Advisory Board, medical texts, and recognised support providers. 

If you have any questions after reading this that you feel haven’t been answered. Please get in touch with us, we will strive to point you in the right direction. 

What is Guillain-Barré Syndrome (GBS) and the variants?

We discuss the basics of GBS – what it is, some of the symptoms you may experience, different types, symptom variants, Miller Fisher, and possible triggers.

Guillain-Barré Syndrome (GBS) | Advice for Carers 

Entering a new role as carer for a family member can be daunting. We cover some pratical suggestions, and have some useful carer support links and resources for you to access.

How is Guillain-Barré Syndrome (GBS) Diagnosed?

We cover examinations, nerve tests such as (EMG and neurophysiology), and lumbar punctures.

What is the advice surrounding vaccinations and Guillain-Barré Syndrome (GBS)?

Containing information on vaccinations via our Medical Advisory Board and sourced journals.

My child has been diagnosed with Guillain-Barré Syndrome (GBS)

Contains information on condition management, paediatric intensive care, how you can help, rehab, going home, and an indepth look at return to school.

Other acute inflammatory neuropathies

Covering Brachial Neuritis and Vasculitic Neuropathy

Treatment for Guillain-Barré Syndrome (GBS) inc. ICU and help from you

Containing information on various treatments for GBS. We explore what may happen in the ICU (such as pain management and ventilation information) and how you can help someone with GBS during their stay (such as mental stimulation, keeping them calm, help coming off the ventilator). 

Mental Health, Well Being, and Work following  Guillain-Barré Syndrome (GBS)

Contains information on how to care for your mental health whether you’ve experienced GBS or a loved one had GBS. We discuss sexual relationships, before a section on returning to work – how to approach and talk to your employer after an absence. 

What happens after Guillain-Barré Syndrome (GBS)?

We cover support and rehab, returning home and care plans, residual symptoms and pain management, hygiene and health, exercise and physio.