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Without ellenor our life would be an utter nightmare

Blog post   •   Sep 27, 2016 15:56 BST

ellenor patient Mollie Warren, who lives in Staplehurst, is 13 years old and has very complex needs. Before she was born, her Mum, Leigh, says Down’s syndrome was queried at one of her scans – but, in general, her pregnancy was quite normal.

Mollie was born on time, although what looked like being a straightforward delivery turned into an emergency c-section. When she was born, Mollie was only 4lb 8oz and was taken to the special care baby unit. However, other than being small, all seemed well.

Leigh said that the first few months with Mollie seemed reasonably smooth but, when the Health Visitor came out to do her little girl’s eight month check, it appeared Mollie wasn’t developing as she should be.

“I must admit that I didn’t panic – I am the sort of person who takes things in my stride,” says Leigh. “I take each day as it comes.”

Mollie had myriad tests and, as time went on, Leigh noticed that she could not sit properly and appeared to have little support in her trunk area.

At 14 months, Mollie had her first bad seizure and was put on epilepsy drugs – which seemed to manage that situation.

Various conditions were considered but the appropriate tests always came back inconclusive.

“Eventually, we gave up looking for a diagnosis and simply just got on with day to day living,” says Leigh. “However, Mollie’s seizures are hardest things to deal with, as they are so unpredictable and, as she’s got older, they have presented themselves in different ways and become more complex. Her seizure care plan, which ellenor has helped us to draw up, is very complex.”

Mollie underwent spinal surgery two years ago, which means she can sit up in her wheelchair, something which Leigh says has made the world of difference.

“Mollie’s situation has changed over the years,” says Leigh. “When she was small, she could say ‘Mum’ but she doesn’t now. She sleeps a lot and she takes a lot of stimulating. But, she’s reasonably chilled really.”

ellenor first contacted Leigh to offer its help back in 2011.

“I must admit that the words ‘palliative care’ made me a bit nervous,” says Leigh. “I also felt I was coping and that I didn’t need extra help – so I said ‘not at the moment’.”

But, the ellenor team kept in touch with Leigh and called every now and again.

“Two years ago, Helen from ellenor gave me another call and I said, OK, come round for a chat,” says Leigh. “Now, I think to myself, ‘why didn’t I accept their help a bit sooner?’ as Helen is such a huge support to us. She’s a problem solver, that’s the main thing. She chases up appointments for us and gets answers.”

While Leigh has a ‘take every day as it comes attitude’ she says that, since becoming a teenager, Mollie’s seizures have become more complicated and more frequent.

“Helen’s help with Mollie’s seizures is invaluable,” says Leigh. “She gets things actioned and she co-ordinates everyone involved in Mollie’s care, including her consultant and the epilepsy nurse. She also works very closely with Mollie’s school.”

Leigh says the Helen supports her in keeping Mollie at home as much as possible – even during some seizures.

“There was one week when an ambulance was called for Mollie four times – twice from home and twice from school,” says Leigh. “Once she’s at hospital, she often settles and then we get sent home. So, if we can manage her at home, without a trip to hospital – with the support of ellenor – then that works better.”

She continues: “Obviously, Mollie does sometimes end up in hospital – but Helen always calls through to tell them we’re on our way and briefs the team there as to what to expect.”

Leigh says that Helen keeps in touch, ringing and visiting regularly.

“Helen has spent time really getting to know Mollie and I know she always has her best interests at heart. She takes time with me too, particularly explaining anything medical and any new medications,” she explains. “I know that if I’m ever worried about anything, at any time of the day or night, I can call them. I’ve had more support from ellenor than anywhere else.”

Leigh says that, looking to the future, one thing that does worry her is Mollie’s transition into adult care.

“It’s actually quite scary. A lot of support will disappear – but I know Helen and the team will support us through that period,” says Leigh. “Without ellenor our life would be an utter nightmare. What I really appreciate is that Helen thinks about me as well and I feel I can unburden on her. Life is busy but I still manage to work fulltime and I can only do that with support. Helen makes sure that all the medical stuff is sorted and that we can all live a ‘normal’ life. Normality is difficult to achieve but it’s so important.”

She adds: “I do have a little meltdown when Helen mentions the she’s booked a holiday – but I always get supported then too. In fact, Helen always makes sure that I get a phone call from another member of the team each day she’s away – just to make sure we’re all OK.”

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