Rail Cards | Passenger Assist | Blue Badges | Bus Passes | CEA Card | Support from Social Care | Education Support | Epilepsy Nursing | Social Prescriptions | Disabled Facilities Grant | Disability News | About this post - Warning This is not blissful

Understanding your symptoms, what works for you, and managing your condition can be a long process. The support of others who understand your viewpoint can be invaluable. This post exists to help point out some things that might make life a little brighter. If you know of anything you'd like me to add please let me know. 

Rail Cards

Get a third off adult train travel with a disabled persons rail card for you and your support person.

Passanger Assist

Passenger Assist is a service available for older and disabled passengers travelling on the rail network.

When you contact the train company you’re starting your journey with, they can:

• arrange assistance

• help you on and off trains

• reserve wheelchair spaces and seats

• provide you with detailed rail information 

• assist with any animals or pets you have with you

Bus Passes

A disabled person’s bus pass allows you to travel on buses for free, or at a reduced rate. You are eligible if you would be refused a driving license because of your epilepsy. In England, Scotland and Wales, a bus pass allows you to use busses for free. In Northern Ireland, a bus pass gets you half-price fares.

Blue Badges

A Blue Badge is a blue card to display on any vehicle you are traveling in to give you special parking arrangements. Many parking spaces are free and are located nearer to the places you want to visit. Not ALL car parks are free, those on private land including some hospitals are not included in the scheme. It's always best to check the information on the way in. Spaces are larger than normal enabling much better access to your vehicle.

CEA Card

The Card enables disabled cinema guests to receive a complimentary ticket for someone to go with them when they visit a participating cinema. The Card is also one way for cinemas to make sure they look after their disabled guests. If you require an adjustment to visit a cinema because of your disability, cinema staff should make them for you whether you have a CEA Card or not. Check your nearest participating cinema.

Support from Adult Social Care

A health and social care assessment can be carried out by social services to find out what help and support you need - like healthcare, equipment and help in your home. This can have a massive positive influence on your daily life.

Services can include:

• home care help with things like cleaning and shopping

• disability equipment and adaptations to your home

• day centres to give you or the person who cares for you a break

• day care for your child

• help with parenting, such as parenting classes

• care homes

Your local NHS service, Citizens Advice Bureau or a charity might be able to help you apply for a needs assessment.

Another good reason to contact Adult Social Care is if you've not yet applied for PIP then they can help you complete the paperwork. I found them very knowledgeable and supportive.

Education Support

Pursuing an education ought to be just as easy for someone with epilepsy as anyone else. Sadly this is often not the case. My advice is if you have a plan or an idea go for it, it may take a little longer and be more difficult but you are worth it! Epilepsy Action is a great place to explore a journey to education.

Epilepsy Nurses

When you have experienced a seizure with or without a diagnosis you should be offered the support of the local seizure nursing team. A seizure can be terrifying and you are likely to have questions. It is not OK for the healthcare professional who supported your first experience to leave you without support. Ask your GP to refer you to the seizure nursing team, they can really help you manage any further experiences and understand how to minimise your risk.

Social Prescribing

Social prescribing is a collaboration between local charities, social care and health services, and local social prescribing link workers. The Social prescriber links worker can connect you to activities, groups, and services in your community to meet your practical, social and emotional needs. They will help you focus on What matters to me? to coproduce a simple personalised care and support plan, this along with their ongoing support can help you to take control of your health and wellbeing. 

Sometimes this can be hard to track down service. Ours is provided by our local Primary Care Trust to our GP surgery. My advice is to call your GP to ask for an appointment with their social prescriber. If they are unaware of the service, ask to speak with the practice manager or check the surgery website.

Disabled Facilities Grant

You could get a grant from your council if you need to make changes to your home to support your daily living needs.

You might need to:

• widen doors and install ramps or grab rails

• improve access to rooms and facilities, for example with a stairlift, or level access shower

• improve access to your garden

• build an extension, for example a downstairs bedroom

• provide a heating system suitable for your needs

• adapt heating or lighting controls to make them easier to use

A Disabled Facilities Grant won’t affect any benefits you get.

Epilepsy sufferers are often discouraged by their healthcare team from using a bath and if you fall during seizures the current thinking is that sitting on the floor of the shower is safest. Do check with your nurses what their advice is for your own circumstances. If your shower is not suitable for you a wet room may work well instead.

POV: When I applied for the grant I was strongly discouraged from doing so, the advisor told me that it would take well over 12 months and we may well not get it. I'm so glad that I told them "well we'd better get started then!" In reality it took less than 6 months to get what we needed with no costs to us; A bathroom to wet room conversion, extra hand rails and an outdoor step which are all excellent and vital additions to the home.

Disability News

Disability News Service (DNS) is run by John Pring, a disabled journalist who has been reporting on disability issues for nearly 25 years. He launched DNS in April 2009 to address the absence of in-depth reporting in both the specialist and mainstream media on issues that affect the lives of disabled people. The news service focuses on issues such as discrimination equality, independent living, benefits, poverty, activism and campaigning, and human rights, but also covers employment, transport, education, housing, crime, and arts, culture, and sport.

All of the news stories are researched and written by John Pring and are sent out to subscribers every Thursday lunchtime. They are then uploaded onto the DNS website after 5pm the same day.

About this post - Warning content is not blissful.

Rapper Costa Titch RIP

There are multiple references to epilepsy being recorded in all ancient civilisations, and as long ago as 3000 years. So why is it still such a mystery to science and suffers? Epilepsy is not a single condition but many have been grouped together. There can be many causes, sometimes known, some unknown, and sometimes discovered along the way. There are more than 30 different types of seizures currently recognised by the ILAE.

Unlike many other fields of medicine where conditions follow a regular path by large numbers of people, which can be researched, improved, and sometimes resolved, epilepsy is very individual, which makes research and treatment complex. Additionally, epilepsy is affected by many outside influences such as the tiniest medication change, lack of sleep, and anxiety. Sufferers often have memory issues or may not be conscious when seizing, all of these things mean that a clear understanding can be difficult to reach for both patient and doctor.

Epilepsy is not a disease to be taken lightly either as any sufferer who has been told they are a SUDEP risk knows it can be fatal. Doctors cannot tell you that you have x months left this day could be your last. That is a life-changing circumstance for anyone and everyone they know. Additionally, as a society we do not know what to do when someone has a seizure, and having watched South African Rapper Costa Titch die on stage during a seizure this is heartbreaking. According to a new large scale study more than 1 percent of the UK population suffers from epilepsy which means this disease affects more than 1 million people in the UK currently.

I don't think we are even scratching the surface of supporting sufferers. and the condition is gaslighted to an extent that enrages me. Enough is enough it's time for change. Epilepsy must be treated with the same understanding compassion and desire for change as other fields of medicine.

An excellent method of recording their day and communicating with their medical personnel is essential yet isn't even fit for purpose right now. This would give patients and doctors a better understanding of an individual's condition, which could relieve symptoms and be life-changing for the person. An additional difficulty is that many epilepsy patients suffer from memory loss and are unable to describe their experience because they are not conscious of it so the ability of family members and healthcare professionals to access important information by adding their knowledge is vital. I've been observing a family member's epilepsy journey since 2021 trying to understand possible causes, what makes things better, and how we can make the type of awesome life for them that they deserve.

Understanding your symptoms, what works for you, and managing your condition can be a long process. The support of others who understand your viewpoint can be invaluable.

We would love for you to join us in finding bliss in the everyday. You can subscribe free forever, or you can become a benefactor, business or premium member. This support on a small but regular basis helps us to keep creating more blissful information, activities etc. for all our members. You can also support us by sharing this post with people you think might benefit from reading it, purchasing something lovely from the Bliss Boutique or by purchasing from one of our affiliate links. There are now sponsorship opportunities for posts and pages for all kinds of organisations. We will continue to share good things here as this page develops and as epilepsy sufferers start to receive the support and recognition that is their legal right.