Sarah Purnell and Mary Churchill tell SARAH SINGLETON how looking after Caroline Purnell has enriched their lives beyond measure

WATCHING Caroline look intensely at Mary, when she puts her face right up to Mary’s so barely an inch separates them, it is clear at once the two have an affinity.

While many people might find Caroline’s scrutiny unsettling, Mary is warm, calm and relaxed. She smiles, long accustomed to this slender woman of 33, who looks younger than her years.

Caroline is unable to speak – she has learning difficulties and epilepsy – and Mary has helped care for her for more than 20 years.

Caroline is the daughter of Sarah and Michael Purnell, from Cheney Manor.

Caring for a child, and now an adult, with learning difficulties has meant extending their family in unusual ways. Although Mary Churchill, a 67-year-old great grandmother, is a professional personal assistant for Caroline, she is much more than that.

“Mary is part of the family now,” Sarah says. “We also have a wonderful respite family who take care of Caroline one weekend a month, so we have some time for ourselves. And Caroline needs continuity.”

In all, Caroline has five personal assistants, though Mary is the most long-standing and spends three days a week with her.

It is a role Mary says she enjoys immensely, and she laughs at the suggestion of retirement – even though she now has three children, eight grandchildren and five great-grandchildren of her own.

“Caroline has been lovely to work with. She has her problems, but so does everyone. She is a truly wonderful young lady,” Mary says.

“She has a wonderful smile, and she is quite mischievous at times, and a very loving person. Caroline has a quality that really shines out – she is very likeable.”

Mum Sarah too, is eloquent about the ways Caroline has brought blessings into her life.

“She has brought a lot to us. If I hadn’t had Caroline, our lives would have taken a very different path. She has enriched us and taught us many lessons in life, and opened lots of doors. It is a very positive thing.

“As a person she has made me stronger, more intuitive, more knowledgeable.”

This journey, of course, has not been an easy one and the Purnell family’s response and growth in the situation is testament to their hard work, vision, determination and love for Caroline.

Not only have they built a life caring for their daughter, the experience of having a child with learning difficulties has spurred them on to create groups and facilities to help not only Caroline, but other children and families in a similar situation.

Caroline was about a year old when her condition became apparent. She had frequent seizures and was diagnosed with West Syndrome. The news of her disability was devastating for her parents.

“I was very bitter and angry,” Sarah said. “It took me seven years to come to terms with it.”

Sarah already had one son, James, at that time, and some years after Caroline’s birth, had a second daughter, Grace.

She had a nursing career, and was a staff nurse at the Great Western Hospital. Later, she returned to work, finally spending 10 years as a district nurse – a job she said she does better because of her experience with Caroline.

“I know what it’s like to care for someone. I see people caring for their husband or wife, and I understand how it feels. It helps me do a better job.”

It was battling for provision for Caroline that inspired her parents to help set up projects that ultimately benefited many others in the community – including the Koalas, a pre-school for children with special needs, and SwIAS, the Swindon Interactive Art Service, which provides weekly interactive arts, crafts and drama activities for adults with learning difficulties.

The Purnells manage a Personal Budget for Caroline’s care, which under the Care Act 2014 means those with social care needs can take charge of the services they need. This option gives more choice and flexibility but is also more demanding, with a high level of responsibility. It means Caroline’s parents directly employ Mary and the other personal assistants and are responsible for all the legal obligations of being an employer.

The benefit of this arrangement is that they can organise a week they know Caroline will enjoy and thrive on.

On Tuesdays, Mary takes her horse-riding, bowling or trampolining. On Wednesdays, she takes her to the SwIAS group, and on Fridays, Caroline has swimming, and a session with Music Alive, an organisation that offers access to music to people with disabilities.

This set-up, so beneficial for Caroline, comes after years of work and from having the drive to set up facilities when they were not available.

She went to Uplands School in Swindon as a child, and as an adult would spend five days a week in a day care centre if her parents had not taken on the management of her Personal Budget.

“We have sometimes struggled over the years to find activities for her and we have explored every avenue,” Sarah said. “We have tried lots of different groups. A couple of years ago the nearest riding school closed so we tried to find somewhere else – she enjoys horse-riding.”

Mary explained how she understands Caroline’s emotions when they are out together:

“Her face changes. I can see when she is not interested in doing something, so we will go for a walk somewhere. She likes walking. She likes being outside.”

Generally people react well to Caroline, though sometimes, Mary said, she gets a second look when they are out. Caroline must wear a protective helmet, in case she has a seizure, which can attract attention.

“When she has a seizure people are generally very helpful. She used to have seizures every day though that has improved over the years. Now it is about two or three times a week though we have no clue when they will happen. The seizures last about two minutes, and they leave her feeling tired and sleepy,” Mary said.

Sarah, 60, retired just last week – though she may return for some part-time and temporary work – and is planning a well-earned holiday to Santorini in Greece with her daughter, Grace.

“We still have to fight for things,” she said. “And as you get older, it gets harder.”

“But we have met some amazing people, people we still know. We have set up groups and done fund-raising. Our life has been full.”