Lucy in her garden at Little Meath earlier this summer
Lucy as a baby
Early days of living at The Meath
Enjoying a day trip with friends her housemates
Baking in Sue’s Cookery Group at The Skills Centre
After boarding at St Piers, Lingfield (now Young Epilepsy) from the age of 11, Lucy moved to The Meath aged 18 in 1998. Lucy is well known to those within The Meath Community as a friendly, happy, person who enjoys activities, trips out and going back to her parental home regularly. It’s clear to see that while Lucy can be happily painting in a session or helping to prepare a meal at Little Meath, she very much has ‘two homes’ and looks forward to her weekend time with her parents, Roy and Lesley. While much can be learned from Lucy and her Support Staff about what she enjoys most and needs to lead a fulfilled life at The Meath, I wanted to find out more and to hear from Roy and Lesley.
I was born the same year as Lucy, just one month before her. Having grown up with a cousin who has complex epilepsy and disabilities, I am acutely aware of the impact that the right care setting has, not just on the person who lives there, but for their relatives. I also recall that things were much harder in my childhood, medical advances and the understanding of epilepsy have been huge since the 1980’s and general awareness of epilepsy and disabilities has improved beyond recognition. It did not take long at all for me to ascertain that Roy and Lesley have been utterly heroic as parents, never failing to persevere and creating support for other parents who found themselves in a similar position, having experienced a lack of support themselves.
When Lucy was young, Roy had a busy sales role which required international travel. Lesley later worked for Air Lingus but while Lucy was younger, she focused her time and energy on Lucy who developed high needs.
Lesley recounted their story as parents of their young baby Lucy, when at six months old Lucy developed chicken pox and she had a seizure. It was first thought to be a febrile convulsion but sadly Lucy started having more and more seizures and was put on medication thereafter. At the age of two and a half years having not benefitted from various medications, Roy and Lesley sought a second opinion. Lucy was referred to an epilepsy specialist at the Park Hospital and the John Radcliff Hospital where doctors recommended that Lucy was taken off all medication immediately and sadly this resulted in dire consequences. Lucy was admitted to the local general hospital where she had seizure after seizure and doctors had to deliver the devastating news to Roy and Lesley that their beloved daughter and only child might not make it through the night. Mercifully, Lucy pulled through.
Due to the severity of her condition, Lucy was transferred to Great Ormond Street Hospital. When she was discharged some six weeks later, Roy and Lesley had to be trained to care for her new medical needs which included fitting a nasal gastric tube. They recalled how their lives had changed with Lucy’s; Roy’s work bought Lucy a beanbag which she laid on at home, unable to lead her usual active life. Lucy had to re-learn how to walk and talk, finding speech to be a significant hurdle. Lesley remembers that for some time, only those very close to Lucy could understand her.
At the age of four Lucy was diagnosed with autism and her epilepsy continued, she was in and out of hospital and her parents received very little support. Lucy gained a place at Linden Bridge where she began her schooling from reception to year two.
It is quite unimaginably cruel to consider that not only did Roy and Lesley go through so much as parents, but that in the early years they largely did this without any support. Lesley did not have parents of her own to turn to and while Roy is obviously an utterly devoted father and husband, he had a busy full-time career.
Having reached the end of her infant age schooling, it was tough trying to navigate the labyrinth-like system to find the right educational setting for Lucy. Eventually aged seven, her family moved to Hampshire and Lucy gained a place at a local school which had a special needs unit attached to it and a parent support group. Lesley recalls that “attending the parent support group was the first time that I had ever met parents who were dealing with similar issues”.
Inspired by the peer support that had benefitted her and Roy so much, Lesley volunteered for their local MENCAP group. However, she felt that there was a lack of support for parents of children with special needs. Together with some likeminded parents, she set up a support group to enable other parents to benefit from peer support. SCARF (Special Children and their Relatives & Friends) was set up. Lesley took an active part in developing and fundraising for a programme of respite care and activity days for children. Lucy and other children enjoyed these opportunities for social interaction and skills building while they also provided parents and families with some much-needed support and respite. Lesley and Roy are extremely proud that the work of SCARF continues to this day.
At age 11 Lucy needed to move on to secondary education. Speaking to Roy and Lesley made me aware of a real sense of anxiety surrounding each new step in Lucy’s school career. A new school was not a simple change and, sadly, finding the right place was not something that they felt was guaranteed. Faced with an immensely difficult decision, Roy and Lesley decided that the best available setting for Lucy was St Pier’s, where she had to termly board, coming home every three weeks. It was a very difficult transition for the whole family, but over time, Lucy began to settle. But St Pier’s was a children’s and Young People’s service, not a home for life, and as the clock ticked on towards Lucy’s 18th Birthday, once again anxiety began to creep in.
Roy and Lesley had been looking at adult care homes and services for Lucy post 18 but felt at a loss. Fortunately, in a presentation day for parents of young adults whose time at St Piers was drawing to a close, Eleanor Lockner, The Meath’s then CEO, gave a talk about The Meath. Roy and Lesley booked an appointment to come and visit and Lesley spoke of the instant, gut feeling she had upon seeing The Meath.
“I remember first walking up the driveway and seeing the beautiful grounds and thinking what a lovely place it must be to live. We instantly loved it and instinctively felt that it would be a wonderful home for Lucy.”
Agonisingly, as is the case for many families, The Meath did not have a place straight away to offer Lucy. However, shortly before her 18th birthday, when she needed to move to an adult service, Roy and Lesley received a call from Eleanor Lockner, inviting Lucy for a trial day. Lucy had a great time and Eleanor was able to break the wonderful news that there was a place available for Lucy, if she wanted it.
The sense of relief, in simply listening to their story was immense, especially as a listener who has the benefit of seeing how happily the story unfolded subsequently. Lucy is now 41, so she has lived at The Meath for over half of her life, and it is her home for life. As Roy put it “There is no place like home, but we do know that Lucy is in the best possible home from home”.
Clearly Lucy has absolutely flourished at The Meath. Lesley explained that before moving to The Meath Lucy’s speech was extremely limited. Carl Ginns, former House Manager of Little Meath, worked with Lucy to develop her confidence in speech, and she has made incredible improvements in this area since moving to The Meath. This groundwork was supported by Little Meath staff and they, together with the wider Meath team, continue to enable Lucy to live as independently as possible. Roy explained that it has been wonderful to also see a broader range of activities on offer for residents “It’s been continuous improvement for Lucy, she now loves the selection of activities that she can participate in and there is definitely greater choice available for them now.”
As Roy, Lesley and Lucy are such a close-knit family, I was keen to learn more about how The Meath can ensure they are kept in the loop. Roy explained “We phone up every evening at 7pm to speak to Lucy and we are fortunate to maintain regular contact with The Meath as we pick up Lucy and bring her home for weekends regularly.”
While I usually find Lucy to be very happy, I was also aware that, quite understandably, she can experience anxiety at times. Sadly, as for many people, regardless of complex medical conditions and disabilities, the pandemic was hugely unsettling for Lucy. Lesley asserted “After a long period of being away from The Meath and with us at home, Lucy found going back difficult and even took to shutting herself in her room rather than taking part in group activities, which is unlike her. We worked with Lauren and the team at Little Meath and thankfully we got her back on track.”
Lesley and Roy are both hugely supportive of The Meath and their gratitude for the staff who support Lucy is always apparent. “Lucy’s care has gone from strength to strength over the years and the staff at Little Meath are brilliant. It’s not that it’s always perfect, there will always be little issues that crop up, but we’ve always been able to communicate well with staff and sort it out, that’s what’s key.”
Having had the privilege of seeing life spring back into action at The Meath as lockdown restrictions have eased, I have noticed Lucy and many other residents return to a more usual pace of life. Now with the full range of skills-based activities on offer at The Skills Centre (rather than at home in household bubbles only), Changing Perceptions and external providers and with the ability once again to enjoy trips out, Lucy is absolutely thriving.
Thank you, Lucy, for being an utter inspiration and, like many other Meath residents, for willingly accepting lockdown restrictions and the sacrifices that go with them, without fully understanding the reasons for them.