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Support Resources

We strive to provide as many resources as possible to help people with IIH and their needs.


Citizen s Advice Bureau

Brain and Spine Foundation

The Brain and Spine Foundation exists to provide this information and to be there during diagnosis, treatments and in the longer term, to answer questions and provide support throughout a patient's journey. They are the only UK wide charity providing support on the full range of neurological conditions.

National Advocacy Service

The Brain Charity

Supporting people with neurological conditions, their families and carers. Neurosupport provides support that complements medical provision, to people with a neurological condition, their families and professionals who care for them throughout their journey. 


Employment and Support Allowance (ESA)

You may be entitled to ESA if you are unable to work. How much you are entitled to depends on your circumstances, if you’re entitled to ESA, you'll be placed in 1 of 2 groups and will receive:

up to £101.15 a week if you're in the work-related activity group.
up to £108.15 a week if you're in the support group.

If you qualify for income-related ESA, you automatically qualify for free prescriptions.

If you qualify for contribution based ESA, you might qualify for free prescriptions, depending on what your total household income is or what conditions you need medication for.

To qualify to get free prescriptions because of low income, you need to complete form HC1. You can get the HC1 form from the jobcentre, or by phoning 0845 610 1112.

If you qualify for full prescription costs, you will receive an HC2 certificate.

If you qualify for some help towards prescription costs, you will receive an HC3 certificate.

If you are able to get free prescriptions, then you also qualify for help with:

free NHS dental treatment

free wigs and fabric supports

free sight tests and access to optical vouchers to help with the cost of glasses or contact lenses

assistance with the costs of travel to an NHS appointment on referral by a primary care practitioner (eg doctor, dentist or optician).

To find out more about help with health costs visit NHS Business Service Authority

Personal Independence Payment (PIP)

You may be entitled to PIP if you have long-term ill-health problems or a disability. You could get between £21.55 and £138.05 a week. The rate is based on how your condition affects you.  We can also help you with applications on request. 

Universal Credit

Universal credit replaces benefits for people who are on a low income or out of work.

You can also contact us to help you with any benefit claims.

Benefits Guide 


British Tinnitus Association 

Action on Hearing Loss For people with pulsatile tinnitus

Visual Advice and Help

RNIB (Royal National Institute of Blind People)

The Partially Sighted Society

Blind Children UK

The Partially Sighted Society

Action for the Blind

Disability Information

Disability and Work

Disability Rights

Equality Act

Taking Sick Leave

Looking for work if you're disabled

Caitlin's Wish by Victoria Taylor

Caitlin’s Wish is a fairy story with a twist. Based on the reality of a family learning to live with IIH, this story helps children to focus on the positives in life. It follows the lives of Caitlin and Chris who become young carers in a very short space of time. They find it difficult to understand, asking ‘Why me? Why my Dad?’ They feel so sad and alone, until a magical robin comes into Caitlin’s life and changes everything for the better.

It’s cleverly written so that the story can be used for any child with a disabled family member, as well as being suitable to raise awareness of what it’s like to be a young carer.

Since it was first published this book has helped countless families to see life from each other’s perspective and start discussing their own situations. It’s also been used in young carer’s awareness talks, and it’s been used in schools to raise awareness of young carer’s issues

Victoria continues to write under the pen name of V A Lewin. She is currently writing a schools resource book which will be available in 2016, and a book of short stories for young carers which will also be available in 2016.

Financial Help

In the future we will be able to provide grants for financial hardship and convalescence once we have adequate funds to do so.

Disability Grants


Healthcare Travel Costs Scheme


Grants that are available to help with the cost of home adaptations for adults and children with disabilities

Health and Diet

Nutritionist Resource offers a simple way to connect with professional nutritionists, nutritional therapists and dietitians across the UK. You can search by location and specialty. 

Nutritionist Resource

NHS Advice Services and Your Rights

There may be  occasions when you are not happy about not being able to see your doctor or you may be unhappy about your doctors duty of care (duty of care is how you're being treated). There are services you can use who will listen to your concerns and mediate for you so that these concerns are dealt with quickly, and to your satisfaction. 

Patient advice and liaison services (PALS) - England

Patient Support and Advisory Service - Wales

Complaints Advocacy Service - Wales

Patient Advice and Support Service - Scotland 

About NHS Hospital Services

Making choices about your treatment

The NHS complaints procedure explained

The Patient and Client Council - Northern Ireland

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