Why the Meath means so much to our family...

Linda Thomas talks to Newsletter editor Tim Sharp about her daughter Hannah's journey to the Meath and the progress she has made in 2 years.

When did Hannah's epilepsy first become apparent?

We first noticed a problem at 6 months when Hannah had her first convulsion. Of course convulsions at that early age can be a symptom of other problems. After that she had convulsions every 3 months or so by which time we had a positive diagnosis that she had epilepsy.

Did her diagnosis make a dramatic difference to your lives?

Yes, it did. Our lives were full of watching her. We could never relax because of her epilepsy. As a child, she would have a seizure without warning, about once a week when she would collapse to the floor. Clearly someone responsible needed to be with her at all times to assist her recovery and if necessary, move her bodily into a safe position. Because none of our family lived near to us and also because Hannah is our only child, this responsibility rested either with my husband, me, or Hannah's schoolteacher. Life becomes very claustrophobic when you are caring for a child with severe epilepsy. We did everything together, just the three of us. We were really on duty 24 hours a day. Hannah also has learning difficulties which meant it was impossible for her to make friends. We tried to help her but it was very hard for us to find children who would make the effort to relate to her; partly because of her communication problems and also because we had to be sure that other children's parents could cope with her seizures.

When did you first realise that you might all benefit from her entering residential care?

I think we first considered it when a teacher at her special school said "Hannah doesn't have to be living at home for ever". We couldn't believe that she would be looked after properly away from us but then we heard about NCYPE (National Centre for Young People with Epilepsy) which ran a residential college in Lingfield in Surrey. She went there when she was 18. She missed us dreadfully at first but after a month or so she started to enjoy it and we began to realise how well she related to the other students and staff. We were very thankful then that we had decided against the other option of her living close to us at home sharing with someone else with similar needs. At the time she went to NCYPE our local authority still did not have any facility for coping with Hannah's complex needs (someone on duty through the night) or even someone with similar needs for her to share with.

How did you go about selecting which care home to look at?

After Hannah's successful progress at NCYPE we knew she needed to be with other young people dealing with similar problems to her. NCYPE held a Parent's Day once a year, when representatives from various organisations offering help and care would come along and explain the services they had to offer. There were a number offering residential care, but unfortunately none in the West Country, where we lived at the time. We started looking quite early so that we could be sure of a place for Hannah. We looked at all possible options including the Meath.

What were your first impressions of the Meath?

Our first impression was positive. We knew the Meath had been providing services for people with epilepsy for a long time and yet their facilities were quite up to date and they were making every effort to bring all their accommodation up to the new build standard. We particularly liked the location; quiet and close to Godalming. Hannah loves to browse and shop so the easy access to the town's supermarkets and other shops was a big plus. We also felt it was important to be part of a real town community. Overall, we were very encouraged - the staff were friendly and the feel of the place was calm and happy.

How did Hannah react to the Meath?

Not well! In fact on her first visit she didn't want to cross the door! Perhaps she was daunted by the fine old building. Anyway, it was a gloomy face until the moment she spotted an old friend from NCYPE. Then it was just like the sun coming out. A broad smile of recognition and suddenly the Meath was great! Her friend showed her round and it's true to say that from that day, 4 years ago, Hannah hasn't looked back.

Has the Meath lived up to your expectations?

Yes, we think it definitely has. Hannah is really happy here. In fact, so happy that we have trouble getting her to visit us at home! We even had trouble getting her to join us on a specially planned trip to Disneyworld. "But I'll have to leave all my friends at the Meath behind", she said. She did eventually agree to come and had a great time but it was touch and go!

Do you feel she is being given enough opportunities to live a full and rewarding life?

Hannah has a far more social life at the Meath than she would ever have had either at home or in supported living accommodation. She would have been cut off and lonely, as she never did relate well to her peers locally. At the Meath, she goes out with her friends for meals, on minibus trips to the theatre or cinema; they enjoy discos and are encouraged to use the gym facilities. In the Day Centre they practice carpentry and drama and are encouraged to try painting. Hannah loves cooking and is encouraged to plan her menus and shop for her meals. She is encouraged to keep her room tidy and do her laundry and ironing. Today, she is capable of doing far more than she would ever attempt at home, and this is NYCPE and the Meath's doing.

What does she particularly enjoy about living here?

I think I would have to say her friends. Her independence. And the feeling of being grown up. Plus of course the work she is now doing. The Meath are always looking for suitable opportunities for residents to take on jobs both inside the Meath and out in the community. Hannah already works in the Meath Library once a week and next week she starts a weekly job in the Beacon Centre cafe.

Do you feel that her epilepsy is being correctly managed?

In the last few years Hannah's epilepsy has remained fairly stable. She has seizures once or twice a month, usually at night. We attended the neurological appointment with Hannah at the Royal Surrey Hospital and felt that the consultant was very thorough. There is a good working relationship between Annie Parker at the Meath and the epilepsy consultant and we are confident that if there is a problem with Hannah's seizures, this would be addressed correctly. We still keep regular tabs on her seizure frequency and health.

What does the future hold for Hannah?

We hope that Hannah will continue to enjoy the company of friends and staff at the Meath. Gradually, she will achieve more independence and perhaps in time, live independently in the community although still under the umbrella and care of the Meath.

But for Brian and I, by far the most important thing is that to Hannah, the Meath is home.