PARENTS have told The Argus how they are indebted to the outstanding Royal Alexandra Children's Hospital staff who helped save their severely ill daughter's life.

Aaron Neale and Coleen Moors, whose 15 month-old-daughter Lorenna struggles to breathe on her own and has heart disease, said guidance from nurses meant they knew how to resuscitate her when she stopped breathing twice at home.

They spend most of their time with her at the Royal Alex while she is being treated which they say is like a "second home full of her uncles and aunties".

Coleen, 27, of Hellingly, added: "The staff are amazing, the care is fantastic."

The praise comes after the hospital, and all children and young people's services provided by the Brighton and Sussex University Hospitals NHS Trust, were rated outstanding by the Care Quality Commission (CQC).

The only other dedicated children's hospital in the country to achieve this status is the Evelina in London.

The trust - which also runs the Royal Sussex County Hospital next door - was put into special measures in August after the CQC rated its performance overall as inadequate.

But the high standard of services for youngsters - including the Princess Royal Hospital in Haywards Heath and care provided in a huge range of other departments - shone through and was given separate merit.

The Royal Alex emergency department alone sees around 25,000 children a year and is the only one of its kind for patients for Sussex, Kent and Surrey.

The trust also won praise for its specialist healthcare to treat conditions like cystic fibrosis, for the work of the Trevor Mann Baby Unit, in Brighton, and the Special Care Baby Unit, in Haywards Heath, and its close involvement with services at other children's hospitals.

Work with youngsters who have diabetes is recognised as better than the national average, a country-wide survey found.

Doctor Ryan Watkins, clinical director for children’s services, said: "It has been a surprise and an enormous pleasure to be rated outstanding.

"It was an ambition of ours and has shown everyone's hard work as paid off over the last ten years. We’ve worked to focus on the needs of children in everything we do."

He is already planning more improvements like making the critical care unit even better and establishing a children's care network across Sussex with other hospitals.

Nurse Janet Hall, who has worked there for 26 years and oversees training, said the rating was down to the dedication of all the staff.

The trust has also been shortlisted for four Health Service Journal awards - more than any other in the country - with children's services along in the running for two titles.

Money from the Rockinghorse Children's Charity and other donations are pivotal to its success.

They fund equipment and extra features to distract and entertain children while they are in hospital - like sensory displays in the emergency department and a play therapy room.

Rockinghorse marks its 50th anniversary next year and is pledging to donate £50,000 to the hospital and its other children's services across Sussex as a result.

Doctor Kamal Patel, consultant paediatrician who leads critical care at The Alex, said: "We take our responsibility to provide an excellent service very seriously. Rockinghorse enables us to do the excellent."

PLAYROOM MAKES LIFE EASIER FOR LORENNA AND HER PARENTS

BEAMING, wide-eyed and alert, little Lorenna the miracle baby is cradled in her mother's arms.

Despite a traumatic labour in which her twin brother Mason was tragically still born, the 15-month-old survived against all odds.

Aaron Neale and Coleen Moors feel blessed they have been able to introduce their children Luke, eight, and Marrisa, six, to their younger sister.

But every day is an uphill struggle as she is entirely dependent on a tracheotomy and oxygen from cannister to breathe through her tiny, crushed airwaves and a ventilator.

I sit perched on a tot-sized chair as the tiny fighter smiles, observing everything around her, and the couple tell me of their ordeal.

Coleen was rushed to hospital when she began to haemorrhage at 26 weeks and had an emergency caesarean. Lorenna was so small one of her hands was the size of a fingernail. She was cared for at the Trevor Mann Baby Unit after one of her lung's collapsed, she was diagnosed with heart disease and could not breathe or feed on her own.

They were forced to give up their jobs as a removal man and a support worker for people with learning disabilities to balance care for their older children and hospital visits.

The couple had to resuscitate her twice in the space of a month at their Hellingly home. They say they are indebted to the nurses who taught them the techniques.

Aaron, 31, said: "I was out in the garden one night after Lorenna had been put down to sleep and I could hear her coughing, then Coleen screaming for me to come inside. She had gone blue. I went straight into everything they taught us - turning the oxygen machine up to its highest setting and giving her mouth-to-mouth. It was really scary but the instructions they gave us saved her life. Coleen had to do it another day."

Coleen, 27, said: "It is always in the back of your mind that she could stop breathing. The quality of care here is brilliant, the staff are amazing, we cannot thank them enough for what they do for us. They are like family. It is like a second home full of Lorenna's aunties and uncles here."

The hospital is stripped of the typical clinical atmosphere with vibrant decorations and toys. Finding an office strewn with toy zebras is commonplace here.

Pictures of popular children's characters adorn the walls of the children's treasure trove known as the play therapy room. Past a grinning Buzz Lightyear and Spongebob Squarepants is a shelf piled high with DVDs of everything from Peppa Pig to the Disney classics. A doll's house, miniature kitchen, and other games are in various states of disarray around the room - proof the retreat is a hit with its infant guests.

They can even embark on a deep sea adventure in the next door sensory room designed by SeaLife Centre and funded by donations. Fish swimming on the floor scatter when touched, there is a comfy 'sea bed' to sink in to and relax to the soft sound of bubbling water, all watched over by a giant, glittery jellyfish.

Six staff are based in the room for families who seek solace from reality. Nurses play with children while parents have a well-earned break. The whole idea is to distract children from thinking out their treatment with fun activities. It is a great persuasive tool - many will take their medicine if they know there is a visit to the room in return. Rather than a scary hospital, it becomes 'the place with the amazing fish room.'

The emergency department is leading by example as the first to have its very own sensory room. In addition, an interactive 'magic carpet' entertains the waiting room, presently with Hallowe'en ghosts and ghouls flying around. 

There is even a child-friendly rating system with 'tops' or 'pants' pegged on a washing line to ask patients to say the best and worst things about the department. 

On average between 80 and 100 children are here every day with up to 40 at one time and these figures are increasing, The surge is after school, once parents are home from work and when GP surgeries are closed. But the ward has no problem recruiting nurses - they are lining up to work in such a great unit.

In the high dependency unit a rendition of Twinkle, Twinkle, Little Star drifts down the corridor.

It is the work of Kate Murdoch and Marina Perryman, musicians who visit the wards and play to patients as part of the Wishing Well project. The pair have played regularly to eight-month-old Thomas Wright who was born 16 weeks early. He is completely blind but is soothed by the music, which is also thought to help babies develop. He is in a blissful slumber after their serenade while his mother Mary gently rocks him and his grandparents Janet and Mike Boursnell listen nearby.

The couple have been driving most weeks from Essex to visit their newborn grandson in hospital.

Mrs Boursnell, 62, said: "The care by staff and the volunteers here is absolutely fantastic."

HOW THE ROYAL ALEX GOES THE EXTRA MILE

TEN reasons why the Royal Alex Children’s Hospital is outstanding:

1. “Parents were unanimous in their praise of the service and reported that staff went the extra mile to support them as well as their child. Parents were considered to be active partners in their child’s care, and staff took great care to ensure individual needs of both patient and families were met.”

2. “Patient care was consistently better than the national benchmark, including patients with asthma and diabetes.”

3. “Staff at all levels were strongly motivated to provide reassuring and compassionate care to both patients and their families.”

4. “All ward areas were visibly clean and all exceeded the required standard in regular hygiene checks.”

5. “Staff had a clear understanding of their safeguarding role and responsibilities. Patient risks were appropriately identified and promptly acted upon with clear systems to manage a deteriorating patient.”

6. “There were innovative and pioneering approaches to care with evidence-based techniques.”

7. “Staff used highly innovative ways to ensure that the views of children were heard and made use of this to develop the service in ways which improved their experience.”

8 “The service is tailored to meet the needs of individual people and was delivered in a way to ensure flexibility, choice and continuity of care.”

9. “There was clear evidence of dynamic and innovative leadership within the nursing teams.”

10. “Incidents were reported and investigated. Lessons learned were shared with all staff to reduce the risk of recurrence.”

VIEWS FROM THE FRONT LINE

Clare Morfoot, 44, of Brighton, is matron of the Trevor Mann Baby Unit who has worked for the trust for more than 17 years.

"It is really rewarding to help the staff and the families of the babies.

"I'm in charge of 120 nurses in the Trevor Mann and in Haywards Heath. We focus on supporting the parents of the patients and making sure they are ok. We are always looking for ways to develop the service and make sure we offer the best family care."

Alice Pashley, 26, of Brighton, joined The Alex as a play worker a year ago.

"Our job is to bring fun to the children who are being treated here. We go around all the wards to make sure they have something to do.

"They see us as someone different, someone fun who isn't going to be carrying out procedures they might be nervous about. It's about giving them something fun to focus on. We try to make them forget they are in hospital for a moment. It is really great to know that you are helping a child feel happier and more comfortable while having to be in hospital and helping with their recovery."

Amy Farmer, 25, of Brighton, has worked as a play specialist in the hospital for three and a half years.

"I have always wanted to work in a hospital. Before I worked with children who had learning difficulties in nurseries before studying for my degree so I could work here. It is a challenging job, you are meeting children with all sorts of conditions. I love it - it's so rewarding working with long term patients, seeing them grow, get better and go home. You get to know the family really well.”

Lorraine Tinker, 48, of Brighton, is a leading nurse for children's services who manages staff and has worked at the trust for 3-and-a-half years.

"What I love working here is seeing how everyone pulls together to make everyone work. I am really proud of my staff. We're fortunate to have a new building but it's the staff who make The Alex what it is. They are always willing to go that extra mile and there are people with a lot of experience working here. The children and their families are at the centre of everything we do."

Toney Pitt, 57, of Brighton, is a housekeeping assistant who has worked for the trust for a year.

"I really love working with children. It is really important to keep the hospital clean to keep infections away so I take this job very seriously. I work only in The Alex and I love coming into the wards because the children recognise me and they smile. It's nice to know I am helping to cheer them up while I'm in here. You get to know certain children who are in here for a long time, it's lovely to see them smiling. It's quite a challenging job and there is a lot to do but it is worth it."

Leila Powell, 32, of Brighton, directorate manager of children's services.

"It really means a lot to me working here as I was treated in The Alex when I was 11 and diagnosed with Crohn's Disease. It feels right coming to work here. Some of the staff who are still here treated me when I was admitted - I'm indebted to them. We have a lot of experienced staff here. I love hospitals - I think a lot of wonderful work happens here and have always wanted to be working in one.

"I'm in charge of the day-to-day running of the hospital and making sure everything works together - everything from making sure a room is available to treat a patient and there is space to book them in for the tests and procedures they need as well as making sure the consultants and staff they need to see are available. It's all the behind the scenes work, checking we have the equipment we need, that sort of thing."

Jason Gray O'Connor, 44, of Brighton, is a paediatric nurse consultant who has worked for the trust for 10 years, five of which have been in The Alex emergency department.

"I love my job here and it would be really difficult to leave it. We are always thinking of something new to do. The team is very united and everybody is treated the same - there is no hierarchy and everyone's opinion is respected. It works really well. It is the people that make this hospital - there are some brilliant people."

Helen Parry, 30, of Brighton has worked as a pharmacist for two years.

"What I love about working here is that you can ask anyone everything - everyone is friendly and helpful, very accepting and willing to listen. It can get quite busy but we all work together."

"We visit the wards and take the patient's drug history and check what medication they were taking before to make sure they are prescribed correctly while they are in hospital. We always dispense drugs here."

Susan Pettit, 62, of Brighton, has has worked for the trust for 20 years and is also a pharmacist.

"I love that everyone is so friendly and there is a close bond between the staff.

"We are responsible for coming on to the wards every day to check the drug charts and check they are written properly.

"It is important everything is correct because if someone is given the wrong measure that could cause problems.

"In our job we can help get patients ready to go home."

Doctor Ryan Watkins, 47, of Brighton, is clinical director for children’s services who has worked at the trust for 12 years.

"It feels like we are one big family. Everyone who works in the children's hospital enjoys their job and it is not just the staff at The Alex that make the service outstanding, it is anyone who provides children's services for the trust. This could be anyone from the dentistry team to the anaesthetists and at other sites too. We all want to contribute to providing great quality care."