I was pleased to be nominated for respiratory nurse of the year in the BJN Awards 2019 and proud to be a runner up.
Nursing and caring for children has been a large part of my life since 1984, when I completed the combined registered sick children and registered general nurse training at Great Ormond Street Hospital (GOSH), London, and Leicester Royal Infirmary.
During my training I had worked with a very determined teenager who had cystic fibrosis (CF). Her zest for life sparked a long-term interest in this genetic condition and the amazing children who live with it. I also worked with children who had severe asthma, at a time when management was not as advanced as it is today, but I realised that, even with the basic medications we had available, adherence to treatment was the key to successful management.
After completing my training I became a staff nurse on the tracheostomy ward at GOSH. This gave me a great foundation in caring for children with artificial airways and I learned how managing their care at home is complex but possible with support.
In 1985 I started work at Hereford County Hospital as a paediatric staff nurse. During the first 6 months I worked many shifts with a baby on long-term ventilation who was resident on the ward until her discharge home at the age of 13 months. Post-discharge I helped the family at home by providing some respite shifts. I have remained in contact with them and am constantly amazed at how well this young woman keeps and how well her family manage.
Respiratory illness has always interested me and I have followed closely the improvements in asthma care that happened with new inhalers and medications. I used improving respiratory care as my research project and final 5000 word assessment for the Diploma in Professional Studies in Nursing that I undertook in my own time.
I began to see how little support and care children with CF were given, mainly due to a lack of knowledge and formal processes around this small group of children with a life-limiting condition. One of our consultants was single-handedly trying to give them the best care possible and I became determined to improve the local care they received, and also to improve my knowledge of CF. To this end, I sourced the only course available on the subject, the Care of Adults and Children with Cystic Fibrosis at GOSH, which I completed. I became the CF link nurse at Hereford County Hospital, although with no funding or time allocation.
‘This work can be extremely challenging as I balance the parents' and child's wishes with the overall aim of allowing the child to live the best and longest life possible with their cystic fibrosis’
I attended meetings at Birmingham Children's Hospital to further my knowledge and promote joint working. During this time I expanded my skills by learning implantable venous access device and gastrostomy care to enable our CF children to have greater levels of care within Hereford and stay nearer their families.
Eventually we were able to start a cystic fibrosis clinic and I incorporated this into my senior staff nurse time allocation, which continued when I became a junior sister on the unit.
My junior sister role gave me more influence and we started to develop policies around care standards for CF in Hereford. I worked closely with the CF team in Birmingham and became local Hereford families' point of contact for care, support and liaison between the hospital and the tertiary centres at Birmingham Children's Hospital and the Children's Hospital for Wales in Cardiff. I have built many good relationships with these children and families; this enabled me to be very supportive in the last few months of a young teenage girl's life. I was involved in discussions around ongoing care and, finally, on the withdrawal of care to allow a dignified death in the manner that she wished. This work can be extremely challenging as I balance the parents' and child's wishes with the overall aim of allowing the child to live the best and longest life possible with their CF.
One of the biggest challenges has been the change to preventing the mixing of children with CF on the wards to reduce the risk of cross-infection. This was difficult for the families and also for the ward staff to understand and putting guidelines in place was extremely important.
Hereford County Hospital moved into a new building in 2002, which brought its own challenges to my role as junior sister. One positive result was setting up a high dependency cubicle, which brings together equipment and facilities in a single space, enabling us to provide more structured and consistent care to acutely ill children.
In 2005 I was promoted to ward manager of the children's unit, and continued my role as CF link nurse.
In 2010 I was very lucky to gain the new role of respiratory and cystic fibrosis clinical nurse specialist within the Trust. This role has been extremely challenging at times but being able to implement changes in care and have allocated time to make improvements in care of our young respiratory patients has made it very enjoyable. It was initiated to incorporate asthma and CF, but quickly expanded to include being the lead for home oxygen (especially those babies with chronic lung disease of prematurity), tracheostomy care, liaison for children on non-invasive ventilation, and the formation of palivizumab clinics to protect vulnerable babies from respiratory syncytial virus infection. In 2018 I set up nurse-led respiratory clinics. This has effected a significant improvement in waiting times and allowed a review that focuses on the holistic needs of the child and family. I continue to keep up to date with my acute skills and passed the European Paediatric Advanced Life Support course in 2017 for the fourth time.
In 2013 Dr Jayne Clarke, our present lead paediatric consultant for respiratory, and I launched the Herefordshire Paediatric Asthma Strategy. This comprehensive strategy included extensive collaboration with primary care and education and has resulted in a unified approach to asthma within schools, GP surgeries and the hospitals in Herefordshire. I presented this work to the National Paediatric Respiratory and Allergy Nurse Conference in 2014, and as a poster at another national conference in 2015.
I am part of the CF nurses group for both West Midlands and Wales networks; I also belong to the West Midlands respiratory nurses forum. I have regularly been involved in teaching sessions for primary care nurses to improve paediatric asthma care. I am the lead author for advice leaflets, guidelines and pathways designed to improve the care of children with respiratory conditions within Hereford. These include information leaflets on bronchiolitis, pneumonia and persistent bacterial bronchitis. As a testament to the quality of these documents, some have been adopted as regional templates.
The process for providing home oxygen was ad hoc when I took on the role and I have managed this into a formal process, for starting oxygen therapy, managing ongoing care, weaning children off oxygen and for its safe removal from the home. This is now a cost-effective process for the Trust. This work enabled me to became a founding member of the West Midlands Paediatric Home Oxygen Forum 18 months ago. I entered a poster competition promoting the forum's work, gaining second place at the National Respiratory Nurses Conference in 2018. During meetings of this forum I have been able to showcase the work carried out in Hereford to put a formal process in place. It has been easier to implement such changes in a small district general hospital than it could have been in some larger trusts.
I am also the nurse lead for our overnight oximetry service and, with the help of Dr Clarke, have been able to move the service from hospital to the children's homes. Almost all children now have their oximetry performed at home where results are both more valid and of a better quality. This is because the children sleep better in a familiar environment in their own bedrooms, and parents are able to give us detailed information on how their child has slept overnight, including any noises of breathing— and this helps us to interpret the downloaded data accurately. The added benefits are associated savings in costs and bed days for the department. This has been enabled with the development of a respiratory support worker, who has now been able to take on additional roles, including emotional support for our CF children.
I led on the implementation of high-flow oxygen therapy on the children's ward, which largely replaced continuous positive airway pressure in 2016-2017. This included establishing the first guidelines for its use within bronchiolitis care at Hereford County Hospital. I also ensure there are teaching and update sessions for ward staff on all the respiratory conditions for which we care. This includes improving understanding of persistent bacterial bronchitis, a condition in childhood that is not well understood.
Part of my role is audit and recording patient contacts; this work provided the necessary data to increase the team to include a part-time band 6 respiratory nurse and the respiratory support worker since 2016.
In 2018 the hospital's Care Quality Commission report recognised as ‘outstanding’ work I undertook to formulate a bespoke package for transition to adult services for CF teenagers when their normal route of transition was no longer available due to capacity. For me, the benefit was seeing these young people—who I had known since they were babies—move into adult services with as little stress as possible, and therefore enabling them to continue living their lives to the full with CF.
During the 38 years I have been nursing children, my aim remains the same—to help children live the best life possible, no matter its length or their health condition.