If you would like to know more about your stay at The William Quarrier Scottish Epilepsy Centre, read what our patients have to say.
Clare had occasional seizures as a teenager, and when they became more frequent around the age of 18, she was diagnosed with epilepsy. She was prescribed medication for her seizures, but her seizures became more frequent and severe, and she could experience up to four in a week. During this time, she was frequently admitted to hospital. As well as being costly for medical resources, on a personal level she began to feel that her seizures were forcing her to put her life on hold. She explains that she felt her parents became very protective, and she was worried about being able to go out and living a normal life.
But this all changed in the space of five weeks. In the summer of 2013, Clare came to The William Quarrier Scottish Epilepsy Centre. During this time, her condition was continuously monitored, and she trialled different medications. Clare benefitted from the full support of the centre’s multidisciplinary team, including the Sleep Centre and support from the in-house psychologist. In the centre, staff and patients get to know each other well, which creates a supportive environment. For Clare, one of the best things about her time in the centre was the chance to talk to other people who had been through similar experiences. It was, she says, great to know that she wasn’t alone.
Having believed she had epilepsy for years, Clare was amazed and emotional when she discovered that she was actually affected by non-epileptic seizures. This situation is quite common: around a third of patients who have spent time at the centre have received a diagnosis of non-epileptic seizures. Many people will also have been on strong medication which didn’t help their actual condition and which can have a significant impact on health and wellbeing, particularly with regard to side effects. Identifying this and being able to move forward with an accurate diagnosis and, if required, correct medication is vital for patients, and can have truly life changing effects.
Since leaving the centre, Clare is now completely seizure- and drug-free, and her life is unrecognisable. She is now working full time and is very excited about starting driving lessons. She feels she has her freedom back, and recently ran a fundraising night for the centre to say thank you. With Quarriers’ support, Clare is ready to fulfil her potential and get the most out of life.
Peter was one of the first patients admitted to The William Quarrier Scottish Epilepsy Centre. He wanted a clear epilepsy diagnosis, and he needed to change the medication he was taking, but he was apprehensive about coming in. He was expecting to spend three weeks lying in bed in a hospital ward with several other patients, but before his stay, he visited the centre and was impressed by its facilities. He saw that he would have his own en suite room, that there were lots of recreational activities available and that he would have access to the open air courtyard at the heart of the centre. Being able to see where he would be staying and having the opportunity to speak to staff helped to reassure him.
Peter spent three weeks in the centre in June 2013. During his stay, he would start his morning with a strong coffee, much as he would do at home, and would spend the day taking part in activities like art classes and exercise sessions or simply relaxing in the courtyard. When moving onto new medication, patients have to stay in the centre, but once the medication was stabilised, Peter was able to go for days out in Glasgow.
One of the biggest changes in diagnosis is new wireless EEG technology. Previously, patients would have had to stay in bed for days: now, wireless transmitters are fitted via a belt around the patient’s waist and they can be monitored while moving around the centre or even outside in the courtyard. Peter remarks that he often forgot he was wearing it and was able to sleep with no discomfort.
For Peter, the biggest challenge was being away from his family for so long, but the flexible visiting hours meant he could see his wife and two young children as often as he could. He found that staff and other patients at the centre were really accommodating to his children, and one of the nurses even brought in toys for their visits.
Peter’s experience at the centre has been an extremely positive one. For him, one of the best things about his time in the centre was getting to know other people affected by epilepsy and sharing their experiences. He says that having the answer of a proper diagnosis has changed his life, and through this fantastic new facility, Quarriers is ready to change lives for thousands more people.
Before coming into the centre for my stay, I was a little apprehensive about what to expect and the length of time away from home, especially staying with people I had never met before. When I arrived at the centre, the staff were very welcoming, and explained more about my stay and showed me around. Within a few days, my medications started to be altered and new drugs introduced. Although I was having seizures in the centre, it was comforting not only to myself but my family that the medication changes were being made in a controlled and safe environment where the staff are fully trained to deal with all situations. This helped immensely just knowing they were there at any time.
The centre itself has many facilities. There is an activity room with a Wii games console and fitness equipment. There is a main sitting lounge area with numerous DVDs and books, a keep fit class once a week and an art class once a week. Each patient has their own room where they have the option to sit in their room and watch TV or go elsewhere in the many areas of the centre. The unit also has a lovely courtyard area which was used very frequently in the good weather.
For me personally, the best part of being here was meeting other patients who I could share my seizure experiences with and who understood what I was going through. Although epilepsy itself affects everyone in different ways all the patients were there for the same reason and despite having a very supportive family and friends it was nice to talk to other people who could relate to your story.
I stayed in the centre for five weeks, and although it seems like a long period of time to be away from your family and friends, you do get into a daily routine and time passes quickly. The only piece of advice I can give from being a patient is not to be too concerned about the duration of your stay: look at the long-term results at the end of the day, and believe me it is worth it. I made a lot of friends during my stay and now, after leaving the centre six months ago, I have my confidence back, I am gaining some independence back and most importantly have a quality of life again. I cannot thank the centre and the staff enough for their support and guidance throughout my stay. It has certainly helped me get my life back on track.
I am 45 years old and took Encephalitis 12 ago. I was admitted to a regional hospital for over a year, and the consultant at the hospital suggested that I tried the Scottish Epilepsy Centre. I was very unsure because they had tried so many different medicines without much success, but I decided I would give the Epilepsy Centre a chance - what did I have to lose?
I went for my initial appointment at the epilepsy centre and I was excited about what and how much they could manage to do. When I came back down off cloud nine, I started to wonder what the building was like, so this is the place as I saw it.
The building is very new and you get your own room. The rooms have their own toilet and shower facilities, and there is a big bath in a separate area. There are also rooms to take children and carers. If you like your home comforts, the bed is orthapedic. I had a drawer to lock my purse or any other valuables.
I was given an alarm around my neck which made me feel a lot safer, especially since I didn’t know how my body would react to my new tablets, although I had no problems at all.
All staff do everything they can to make your stay as comfortable as possible the meals are good and you get breakfast, lunch and dinner, two courses if you want, and toast for supper.
There is an activity room. I could keep up with my emails because of the computer, and there is Windows and Facebook, etc. A few of us had a laugh learning to play pool and tried ten pin bowling on a games console. There is also a small gym and Zumba classes. The art classes were fun, especially since none of us had worked with chalk before.
The time doesn't feel as long as you think it will.