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Enabling children to live ordinary lives in extraordinary circumstances through Sunflowers Care

For parents of children living with complex healthcare needs life can be fraught but at Sunflowers Care – a home away from home – children are able to get the support they need. 

For parents of children living with complex healthcare needs life can be fraught but at Sunflowers Care – a home away from home – children are able to get the support they need.

Lucy Andrews and Karen Higgins with Daisy Price at Sunflowers Care.
Picture: Tim George (Picture shown with consent)

Ryley was a healthy, sporty 14-year-old when he collapsed suddenly at home. He sustained a severe brain injury following a massive left intracerebral haemorrhage with underlying brain arteriovenous malformation and left subdural haematoma.

He had been in Addenbrooke’s hospital for three months and specialists felt he would benefit from being in a quieter environment to make further progress, but the family home was being adapted extensively.

Ryley was moved to Sunflowers Care, a home from home created by nurse managers Lucy Andrews and Karen Higgins for children and young people with complex healthcare needs.

2013

Sunflowers Care opens

‘He was unable to walk, talk, eat or do anything for himself,’ says Ryley’s mum Mel Briston. ‘But he settled in well. He loved all the staff and began to make steady progress. Karen and Lucy were amazing and super efficient setting up the therapies and equipment Ryley needed.

‘There were so many personal touches – Ryley is an avid Liverpool fan so they put lots of Liverpool logos in his room and even on the lift.

‘Staff are like one big caring, loving family and they made us all feel part of it, as well giving outstanding care.’

Living ordinary lives

Sunflowers Care, in Cambridgeshire, prides itself on offering a fun and stimulating environment that meets children’s holistic and developmental needs. ‘We enable them to live ordinary lives in extraordinary circumstances,’ says Karen.

Lucy adds: ‘Many children and young people are in intensive care and high dependency units, which can be stressful and frightening at times, even though they are ready for discharge because they are waiting for rehousing, a care package, or a suitable foster family.

‘For one particular young person with an acquired brain injury there was nowhere in the country that could look at her as a child.’

As homely as possible

Since they opened Sunflowers in 2013, the team assembled by Lucy and Karen have cared for 20 children and young people. There are four beds, one for respite care, and children stay for a varied length of time.

‘It might be some months before they find a place at a children’s trust. There is no time limit, but we are heavily involved in discharge planning,’ says Lucy.

20

the number of children cared for so far

Sunflowers is as home-like as possible, with a parent bed in every room. ‘We have had whole families pile in there when safe,’ says Lucy

There are visiting dogs, trips to a country park and importantly a chance to make friends, have home schooling and even join Rainbows. The nurses are proud of their nursing careers during which their paths crossed at times.

Sunflowers Care. Picture: Tim George

Karen says: ‘We had often talked about the impact that growing up in hospital can have on a child’s development. One day we met for a coffee and from then worked tirelessly to ensure that our shared dreams and visions were realised.’

After talking about starting the service for three days, they put aside a day a week to plan. ‘We knew nothing and Googled,’ says Karen.

To support their business plan, they mapped services across the UK to demonstrate the clear need for the service.

‘We had been around for so long that we had a lot of people that we could ask for advice in the community and in hospital,’ says Karen.

‘We built relationships with other units offering something similar to what we were doing even if it wasn’t quite the same. We still meet up with these people regularly for peer support.’

Securing investment

It took a year to secure investment from a local businessman – ‘like Dragon’s Den in real life’ – and find and convert a Victorian house. Lucy was working full time, Karen had a part-time role while doing agency shifts at the paediatric intensive care unit at the Evelina London Children’s Hospital to ensure her skills were up to date.

‘We did not have long to get it together,’ says Karen. ‘We worked on it every spare minute of the day. Our husbands, friends and families converted the property with us.’

From a clinical perspective, they had clear ideas about the gold standard care they would deliver. There are more than 50 staff including a team of registered nurses, a healthcare support worker, a wide range of therapists, and they take nursing students on placement.

50

Members of staff in the multidisciplinary team

‘By role modelling, leading, supporting and supervising we have recruited and nurtured a team of whom we are extremely proud,’ says Lucy.

‘We sourced and delivered intense training. We have a speech and language therapy (SALT) arrangement with the local trust, but we use private providers if that is what the child needs. We get as much as we can.’

Family involvement

The nurses have involved families from the outset. Lucy says: ‘Our parent forum has been guiding us since the beginning from deciding which flooring and furnishings would be the best to what range of activities would make children’s stay happy and stimulating.

‘Feedback from our family questionnaires has been unanimously positive and suggestions help us improve our service further.

‘We were recently inspected by the Care Quality Commission and had a fantastic report. Their opinions are helping us plan future developments.’

Oakley Fuller with Lucy Andrews and Karen Higgins
Picture: Tim George (Picture shown with consent)

'Busy, yet rewarding'

They have no regrets about making the leap out of the NHS. It has been incredibly busy, but incredibly rewarding, says Karen.

‘We can make decisions quickly and for the direct benefit of the children. That can be monumental for parents. These families have to fight for everything when they don’t have the time or energy. And we have the time to plan as we are one-to-one and work it out.

‘One little girl did not communicate at all when she came here by the time she left she was fluent in Makaton and able to express her needs. Because we are a small team we get to know the children – and they just thrive when they feel secure.’

Case study – six-year-old Daisy

Daisy is a six-year-old girl with spinal muscular atrophy type 1-2. Before arriving at Sunflowers, she had been hospitalised for most of her life.

She is on long-term ventilation delivered via non-invasive ventilation BiPAP mask and nasal pillows. She requires six-hourly chest physiotherapy, cough assistance and deep suction.

Daisy had been to hospices to find somewhere less hospitalised, but it had not worked. But she settled into Sunflowers within days of being discharged from hospital.

She had been sharing a ward with children from Syria who had complex injuries from a bomb and she had bald patches from stress. But she soon began gaining weight and height. ‘Her confidence has sky rocketed and she is now happy and secure,’ says Lucy.

The Sunflower team, who were finalists in the child health category of the RCNi Nurse Awards, has rationalised her medication regimen. Her range of movement has increased and her communication improved using augmented assisted communication. ‘She can use her eye gaze now, when before she could only shut her eye,’ says Lucy.

Daisy now does things that other children enjoy. She has joined Rainbows and has five school sessions every week. She has a group of friends and her mum comes to stay with her. The family have spent Christmas together and she has not needed to be admitted to hospital for 22 months.


Lucy Andrews and Karen Higgins were finalists in the child health category of the 2017 RCNi Nurse Awards. Find out more about the other initiatives short-listed in their category, as well as the award-winning project, by clicking here.

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