Here young people talk about their experiences of health care and dealing with health professionals after they were diagnosed with epilepsy. Most we spoke with visited a neurologist at the hospital’s epilepsy clinic regularly and many also saw an epilepsy nurse. A few said that their GPs were also important in their epilepsy care because they were in charge of their repeat prescriptions and regular medication reviews.
Almost all received their health care through the NHS, though a couple of people had seen a neurologist privately. One woman said she felt very ‘lucky’ to be able to do this; another felt that the care in the NHS and private sector had been pretty similar and she had ‘not been impressed’ by either.
Nick says NHS staff are great and work really hard.
Young people usually attended the epilepsy clinic with somebody else – a friend, partner or parent. Taking somebody to the clinic who has seen a recent seizure is often recommended because people themselves are often unconscious and can’t remember what happened. People also liked to take somebody with them for emotional support and because it was a way for their friends to learn more about epilepsy. Other people could also help them remember to ask questions at the clinic and recall the information given.
Dave says it’s good to go to the clinic with his mum. She talks about the medical aspects and he…
Some people preferred to go to the appointment on their own and said that, over time, they’d gained more confidence to do that.
Jason used to go to doctor’s appointments with his keyworker but has now started to go on his own…
On the whole, people felt that they were getting very good health care. Most saw their neurologist every 6 months, and if their seizures were well controlled, every 12 months. Those with poorly controlled seizures saw their neurologist every 3 months and many also had the option of calling their epilepsy nurse if they needed urgent advice.
A couple of people felt that the time between appointments was too long. One woman said she writes questions down as she thinks of them between appointments, so that she will remember to ask them when she next attends the clinic.
Many people also felt that the clinic appointments, which sometimes lasted just 10 minutes, were too short, especially if the doctor was giving information or their diagnosis for the first time.
Dealing with health professionals
Many people saw a different neurologist every time they went to the clinic. They found the frequent changes in staff confusing and frustrating because they felt each time they had to start from the beginning. Some said they valued the fact that they could see the same GP who knew them well every time, sometimes from since they were little.
Ashlea wasn’t given much information by her neurologist and she wasn’t happy with the care. She…
Those who had a great consultant, and one who they saw every time at the clinic, stressed how important this was for them. One woman described it as ‘hitting the jackpot’. People also wanted doctors to tailor care around their individual needs rather than to address them generally.
Nick says that in the clinic doctors need to see each person as an individual, not just as a…
Some people had less positive experiences of health care. A few hadn’t been happy with the particular consultant they’d had and had changed doctors. They emphasised how important it was to have a consultant they could trust and talk to, and encouraged other young people to find a doctor they were happy with. One woman felt she had initiated everything positive about her care and that doctors had been too ‘passive’.
Ben was unhappy with a consultant who wouldn’t change his medication that wasn’t working. He said…
Carole has had many different neurologists and says they all have different attitudes. She…
Many people said they hadn’t received enough or appropriate information about their epilepsy from their doctors, for example about treatment options.
Bex says it’s confusing to see different doctors and nurses at every appointment, especially when…
Harry felt he was given too much information about risks when he was in hospital. He felt scared…
Communicating with health professionals
Good communication between doctor and patient is fundamental in all health care. The people we spoke with strongly emphasised how important it was for them to be able to communicate openly and safely with their neurologist, epilepsy nurse or GP.
It was particularly important for young people that health professionals listened to them and took their views seriously. They also felt it was important that their life whole life was taken into account when making treatment decisions, for example.
Harry trusts his consultant and says ‘he’s changed his life. His epilepsy is discussed in terms…
Some felt that it was easier to talk to the epilepsy nurses about the social aspects of living with epilepsy and that the nurses had a good appreciation of young people’s lives.
Many people stressed how important it was that the consultant talked to them, rather than to their parents, as had often happened when they were younger. One woman said that, when she was a teenager, the consultant used to ‘talk about you, not to you’, which had annoyed her.
People said it was really important to trust and feel able to ask health professionals questions, but also to get appropriate and honest answers back. Many said that, over time, they had gained more confidence to ask questions but some said that, especially in the beginning, it was difficult to know what questions to ask or how to raise them.
Kirsty wants to know more about her epilepsy but feels uncomfortable asking questions when she…
For some, it was difficult to raise sensitive topics they wanted more information about, such as sex, contraception, alcohol and drugs.
Carole found her GP very helpful. She preferred asking about sex and contraception herself rather…
Staying in hospital
Several young people we spoke with had at some point stayed in hospital because of their epilepsy. They had been admitted so they could have detailed diagnostic tests, an operation, or occasionally because they’d had an episode of status epilepticus.
Rachael describes waking up in an intensive care unit after an episode of status epilepticus. She…
Most people had stayed in hospital for a few days or a couple of weeks. One man had had an assessment for a few months because his epilepsy had been difficult to diagnose and control. He said staying in had been a difficult experience and the food had been awful!
For most, staying in hospital had been ‘scary’ because they were in an unfamiliar environment. However, most felt that staff, especially the nurses, had been good and friendly.
Simon says staying in hospital was ‘scary’ but that the staff on the ward were nice.
One woman said that the lack of empathy she experienced from a doctor on the ward made her feel even worse about being in hospital. One man said he had felt ‘ten times worse’ about his epilepsy when he was in hospital because it made it feel more serious.
Katherine has had both positive and negative experiences at hospital and dealing with the staff.
Seeing other young people on the ward who were more ill or had more severe epilepsy had made some people feel worse. However, others found it comforting to meet others who had epilepsy. One woman said talking to others on the ward was a good distraction from the operation she was going to have, and she also found it helpful to speak to others who’d had a similar operation.