Waiting for an appointment

Following the pandemic, many people are facing long waits in between health appointments. Our Clinical Director, Dr Fergus Rugg-Gunn provides practical advice for looking after yourself while you wait.

Restrictions may have been lifted and life has returned to near normal, but one of the long-term legacies of the pandemic is increased waiting times for medical appointments.

With essential resources having been diverted to deal with a surge in hospital admissions and delivery of the nationwide vaccination and booster programmes, people are still seeing delays and cancellations for routine health appointments – including those for epilepsy. And this can cause anxiety.

According to NHS figures analysed by the Neurological Alliance, there has been a 5,000% rise in the number of neurology patients who are having to wait more than a year for an appointment. This includes people with epilepsy, multiple sclerosis, dementia, Parkinson’s disease and motor neurone disease.

We regularly hear from people who are facing long delays for an appointment to see their neurologist or doctor. Or who are still awaiting a diagnosis of epilepsy after a first seizure. Delays can be lonely and frustrating with people left in a vacuum feeling unsupported and worried.

It is hard to predict when waiting times will return to their pre-pandemic levels and, as in so many aspects of daily life, we are having to live with the new normality and find ways to cope.

Our Clinical Director at the Epilepsy Society, Dr Fergus Rugg-Gunn, has drawn up some advice on how to look after yourself in between appointments and where you can get support while you wait.

Peer support on social media

The important thing to remember is that you are not alone, even though it may feel like it at times. We live in a digital world and there are many information resources that you can access online  as well as peer support.

One of the real benefits of social media is that, night or day, you can go online and engage with other people affected by epilepsy who may be going through the same experience as yourself. Social media is not a place for seeking medical advice – this should always be from your doctor – but Facebook, Twitter and Instagram are good platforms for talking and exchanging ideas.

Every day we see an outpouring of support from people all over the world as they confirm ‘yes that’s normal for me’ or ‘that’s exactly how I feel’ or ‘lack of sleep is one of the big triggers for me, too.’ Talking with people who understand, without having to explain just how a seizure makes you feel, is a real shortcut to coping and getting through. 

Knowing there are others out there going through the same thing as you, really can help, even if it’s only the reassurance that others are also having to wait for their regular GP or neurology appointment.

If you’re looking for information, then always choose a reliable site such as  epilepsysociety.org.uk, or go to nhs.uk

Technology offers plenty of opportunities for connecting with friends and family online but, not everyone is confident with using Facetime, Teams, Zoom or any of the other platforms that have become part of our lives.

If you are struggling with technology, the best solution is to ask for help from a friend, relative or neighbour. But Digital Unite also offers some useful how-to guides that could help you to get connected. It covers everything from email, Facebook and Twitter to Netflix and online shopping.

Join the online conversation at:
facebook.com/EpilepsySociety
twitter.com/EpilepsySociety
instagram.com/EpilepsySociety

Calling our Helpline

Of course, not everyone is online. Which is where our Helpline (01494 601400) comes in. Every weekday from 9am-4pm and until 7.30pm on Wednesdays, you can pick up the phone and speak to one of our Helpline operators. While not medically trained, each of them has an in-depth knowledge of epilepsy, and understands the challenges of living with the condition. 

The team is also very good at listening and providing emotional support which can be vital for people affected by epilepsy. Time constraints within the NHS mean that, at the best of times, neurology appointments provide little opportunity to really talk about how epilepsy makes you feel. 

As doctors, our focus is often about ensuring correct medication levels in order to optimize seizure control. There isn’t always time to talk about driving regulations and epilepsy, or the challenges of telling your employer about your seizures. There isn’t always time to talk about personal relationships or feelings of isolation. But this is where our Helpline team is there with a listening ear.

Contacting a healthcare professional

Even if you are having to wait for an appointment to see your GP, whether face to face or by video or phone call, you may be able to seek support and advice through the GP’s online service. Check at the surgery where you are registered to find out whether they have an online service that you could access. This is useful for booking and changing appointments, ordering repeat prescriptions and getting online advice.

If you feel your epilepsy has changed or, for example, your seizures have become more frequent or severe, make sure you let your surgery or epilepsy clinic know - they may be able to prioritise you.

Your local pharmacist can also be a good person to ask if you have questions about your medication or over-the-counter medications. Many pharmacies have a separate consultation room where you can talk in private about any issues you are having with your medication. They are often open late into the evening and at weekends, and you don’t need to book an appointment.

From time to time, people experience problems in getting their prescription. This is often because of local supply issues as opposed to shortages. One of the most useful measures you can take to help you get your medicine as prescribed, is to take your prescription to your pharmacy in good time - up to seven days before you actually need the medication. That way, if the pharmacy does not have your drugs in stock, it gives the pharmacist time to order stock from suppliers or to ring other pharmacies or suppliers, to access your medication elsewhere.

If you are experiencing problems getting your medication, you should always call the customer service desk for your particular medicine. You will find the number on the patient information leaflet that comes with your medication. If you continue to have problems, then call our Helpline on 01494 601400 (Mon-Fri 9am-4pm, Wed 9am - 7.30pm).

Taking care of yourself

We are living in uncertain times and this, in itself, can cause anxiety and stress, both of which can trigger seizures for some people with epilepsy. This is why it is vital to keep your body and mind as healthy as possible.

• Make sure you are eating regular, nutritious meals and drink plenty of water to keep hydrated
• try to get the amount of sleep you know your body needs. There is no magic formula and, certainly, it is a myth that you need eight hours a day. The rule of thumb is that you need the amount that will enable you to feel alert during the day
• take regular exercise where possible, even if this is only a walk around your garden or around the block. Enjoy listening to birdsong or looking out for seasonal changes. If possible, go for a walk with a friend
• try to get as much sun light as possible. Even if you are unable to go out, try to sit by a window or on your doorstep. Make sure you ventilate your home so that fresh air is circulating
•  watching the television can be relaxing but it can also be stressful. Recognise when the television is starting to make you feel anxious and give yourself a break
• keep in contact with friends and relatives. Call or join them on a video call
• if you find yourself feeling anxious, take a look at some of our tips for dealing with this.

Be prepared for your doctor’s appointment

Make sure you are ready for your doctor’s appointment. You are the expert of your own epilepsy and this is your time to discuss the issues that are important to you. Keep a list of the issues or problems that you most want to discuss. This is particularly important if you are having to wait for your appointment. 

• Keep a record of your seizures, their frequency and severity. If possible, ask a friend or loved one to film you if they witness you having a seizure. This can provide important information for your doctor in understanding more about your particular seizure types. Take a look at our seizure diaries.
• Keep a note of any issues that you want to discuss. This could include side effects of medication such as irritability, tiredness, lack of concentration. Or it could be that you’re having trouble remembering to take your medication. Your doctor will be able to help you find ways around this
• If you are experiencing memory issues in everyday life, make a note to tell your doctor. They may be able to refer you to a clinical psychologist who will be able to assess your memory function and suggest strategies to overcome any problems 
• You may be looking forward to a change in lifestyle which is important to discuss with your doctor. Perhaps you are looking forward to starting university; you may need to transfer your medical care to a doctor close to your university. Or you may be thinking of starting a family; your doctor may refer you to a specialist in epilepsy and pregnancy 
• Some women feel that their seizures are worse around the time of their monthly period; others find that the menopause or hormone replacement therapy can affect their seizure patterns. These are important to note, ready to share with your doctor
• Many people experience anxiety and depression at some point in their lives and it can be very common among people with epilepsy. You may like to discuss ways of coping with these feelings
• SUDEP, or sudden unexpected death in epilepsy, affects a very small number of people with epilepsy – around 1 in 1,000. But it is good to discuss your individual risk with your doctor so that, together, you can make sure you reduce that risk.

Find out more

Ways you can improve your well-being
Includes sleep, diet and nutrition, exercise, relationships and sex, complementary therapy, anxiety, depression and memory

Women and epilepsy
Some issues around epilepsy are specific to women including links between epilepsy and hormones, puberty, contraception, pregnancy and the menopause.

Seizure diaries
Find out how to download or order one from our online shop.

Going to university
Making sure you have all the practical and financial support you need to enjoy your time at uni.

Sudden Unexpected Death in Epilepsy (SUDEP)

Includes why this happens and how you can reduce your risk.