BrainSET
Welcome to BrainSET (Seizures Epilepsy & Tumours) which has been created by Victoria. In 2018 Victoria was told she had a meningioma brain tumour and would need to have brain surgery to remove it, from that moment on her life changed. Finding her way around the information, help, support and finances were difficult and exhausting.
During this time Victoria and her family realised that although there is plenty of information it’s everywhere and can be difficult to find and when your brain isn’t working too well it’s often impossible.
This is why BrainSET has been put together. We intend to find links to as much of this information and resources as possible in one easy to use place to help you get to where you need to go to make life easier
Financial support
Universal Credit
Universal Credit is a monthly payment that you can apply for if you are on a low income or out of work.
You may be entitled to a higher amount of Universal Credit if you are unable to work due to an illness or disability.
You can apply for Universal Credit online here: https://www.gov.uk/apply-universal-credit
You will also need to complete a Universal Credit capability for work questionnaire (UC50), followed by a Work Capability Assessment.
The assessment will then place you into one of three groups and determine whether you are eligible for Universal Credit and, if so, how much you will receive. You can find out more about claiming
Universal Credit when you have an illness or disability here:
Personal Independence Payment
Personal Independence Payment (PIP) is a four weekly payment that can help you if you have a long-term illness or disability. The amount of PIP that you receive will depend on how your condition affects you, rather than the condition itself. The application process for PIP can take quite a long time due to the different stages involved in the process.
The quickest way to start your claim for PIP is to phone the Department for Work and Pensions (DWP) and request to start your application 0800 917 2222
Someone else can phone on your behalf, but you will have to be with them when they do. You will need certain information available when you make this phone call, the details of which you can find here:
https://www.gov.uk/pip/how-to-claim
DWP will then send you a form that you need to complete.
During the time between making your initial phone call and receiving your form in the post, it may be a good idea to have a think about what you are going to include in your application, and start gathering any supporting evidence you may need. e.g. hospital letters
Citizens Advice UK have resources to help claimants complete application forms.
https://www.citizensadvice.org.uk/
Following on from the completion of your application form, you will be sent a date for an assessment from a healthcare professional. It is really important to feel prepared for this assessment and make sure you can display exactly how your condition affects you day to day.
You can find some guidelines on how to prepare for your assessment here:
Types of Brain Tumour
There are over 130 known types of brain tumour. These can be high grade (cancerous) or low grade (non-cancerous).
Follow the link below where you will find listed the different types of brain tumour below, with links where we have further information. This list is based on the World Health Organisation’s (WHO’s) latest classification of brain and central nervous system (CNS) tumours.
Source thebraintumourcharity.org https://rb.gy/vaacoh
Types of Epilepsy
There are over 40 different types of seizure, but the International League Against Epilepsy (ILAE) have identify 3 main types:
generalised onset
focal onset
seizures of unknown onset
Source epilepsy.org.uk https://rb.gy/5syv31
Brain Tumours and Epilepsy are frightening for children to have to deal with.
There are some great resources to help children understand, how, what and why.
https://www.epilepsy.org.uk/info/children http://ow.ly/RUc350Eksot
Epilepsy seizures and driving
You must tell DVLA if you’ve had any epileptic seizures or blackouts. You must stop driving straight away.
You can be fined up to £1,000 if you don’t tell DVLA about a medical condition that affects your driving.
You may be prosecuted if you’re involved in an accident as a result.
source gov.uk
https://www.gov.uk/epilepsy-and-driving
Prescriptions
People with epilepsy are entitled to free prescriptions for their anti-epileptic medication, as well as for any other prescribed drugs (but not dental treatment or eye tests). This is called ‘medical exemption’.
Anyone who has been told by their neurologist or neurosurgeon that they are unfit to work and have to claim on the benefits system with universal credit could also be entitled to free prescriptions for their medication.
To apply for free prescriptions in the UK, fill in the form FP92A, available from your doctor’s surgery.
It is important to carry your medical exemption card in case you are asked to show this when you collect your prescription.
In Scotland, Wales and Northern Ireland all prescriptions are currently free. (2020)
Travel
Discounted public transport
If you have epilepsy and are still having seizures or have has a seizure in the last 12 months you may be entitled to free or discounted travel.
This is usually because you would be refused a driving licence if you applied.
You will usually need some proof that you are eligible for the discount, depending on where you live and the rules of the discount scheme.
Bus and tube travel
England: If you have had a seizure in the last year, you should be eligible for a free national bus pass. Some councils have additional travel discounts. Contact your local council for an application form or visit What help is available?
If you have epilepsy and are still having seizures you may be entitled to free or discounted travel. This is usually because you would be refused a driving licence if you applied. You will usually need some proof that you are eligible for the discount, depending on where you live and the rules of the discount scheme.
Bus and tube travel
England: If you have had a seizure in the last year, you should be eligible for a free national bus pass. Some councils have additional travel discounts. Contact your local council for an application form or visit gov.uk for more information.
London: You may be entitled to a Freedom Pass which gives free bus, train, tram and tube travel in London. Call 0300 330 1433 for more information. Some boroughs have a London Taxicard Scheme for reduced cost taxi travel. Call 0207 934 9791 or visit londoncouncils.gov.uk for more information.
Merseyside: you may be eligible for a National Travel Pass. Call 0151 227 5181 for more information.
Scotland: The ‘National Entitlement Card’ gives you free travel throughout Scotland. Contact your local authority (or Travel Card Unit in Strathclyde) for an application form, or call Epilepsy Scotland’s Helpline on 0808 800 2200.
Northern Ireland: People with epilepsy are eligible for a Half Fare SmartPass for discounted bus travel. Visit nidirect.gov.uk
Wales: People with disabilities are eligible for free bus travel throughout Wales. Contact your local authority for details.
Rail travel
You may be eligible for a disabled person’s railcard. This gives you, and a companion, a third off most fares. Call 0345 605 0525 for more information.
Coach travel
Some coach operators, such as National Express, offer discount fare schemes for people with disabilities. Contact companies directly for more details.
Access to work
If you are unable to use public transport because of your epilepsy, you may be able to get financial help towards the cost of your transport to and from work, through the Access to Work scheme. Contact your local Jobcentre Plus office for more information.
https://www.gov.uk/apply-for-disabled-bus-pass
Hair Loss
Many people undergoing cancer treatments for malignant brain tumours are able to receive a free wig under the NHS or Macmillan.
If you are unable to claim through these then some insurance companies with life insurance cover will cover the cost of a wig. Contact your life insurance policy.
Hair loss can be a difficult thing to cope with and accept for children. The book below can help with this.
The Hare Who Lost Her Hair by Amy V. Leonard
This one-of-a-kind story is a message of hope for young children and families who are undergoing chemotherapy or any difficult struggle. Without words like cancer and chemo, the kid-friendly tale follows a brave hare on her courageous journey to overcome illness.
Victora is passionate in helping others find their around these systems easier to find ways to improve the lifestyles of others going through this devastating time. Victoria says “As a brain tumour and epilepsy survivor I know how exhausting and time consuming it can be to find all of this information”