Sharing Current Scottish Practice

Making memories: Supportive care of an infant with a type IV laryngotracheoesophageal cleft

Author(s)

McCormack J, McDougall CM, McFadzean J, Montague ML and Smith P

The importance of palliative care in paediatric critical care, especially for patients with life-limiting conditions, is increasingly recognised. We will describe our supportive care of an infant with a lethal congenital malformation, which maintained stability for 3 months while clinical management decisions were made. This enabled his family to spend quality time with him and make invaluable memories.

A male term infant was diagnosed on day 6 of life with a type IVb laryngotracheoesophageal cleft. At 13 weeks, surgical repair was undertaken but, 2 weeks later, irreparable distal dehiscence was noted and care was withdrawn. Prior to surgery, he was maintained on nasal CPAP with periods off support as tolerated. He received regular chest physiotherapy. He was fed via orojejunal tube. A replogle tube was maintained on constant suction, with the tip in the distal oesophagus. An orogastric tube was kept on free drainage with regular aspiration. The patient was able to interact with his family, enjoy cuddles and baths, wear normal clothes and go out for walks both within and outside the hospital.

This case highlights the importance of promoting family-centred care and intentionally integrating palliative care into the paediatric intensive care unit.

Marie Curie Fife Hospice and Home Service

Author(s)

Heathfield H, Hekerem D, Hall L and Kieran N

Introduction: The pilot delivered tailored care and support at home for terminally ill people and their families. Locally coordinated support included nursing care, personal care, emotional support and practical information delivered by a team of registered nurses, healthcare assistants, health and personal care assistants and trained volunteers. An anticipated benefit was a changed pattern of use, reducing demand on acute services and increasing numbers of patients able to die at home.

Aim: The evaluation aimed to address patient and carer experience, quality and costs of the service.

Results: The evaluation evidenced improved quality outcomes for patients and a changed pattern of hospital use. Significantly fewer patients in the pilot group experienced a hospital admission (5.2%), compared to their matched controls (35.3%) with a shorter average stay in hospital (2.5 days less per admission) and more time in the community (15.8%). Furthermore, significantly more patients in the pilot group (96.1%) died at home, compared to matched controls (24.8%). The economic analysis showed a potential annual reduction in the costs of end of life care in Fife of £743,572.

Conclusion: The integrated service model demonstrates that investment in co-ordinated palliative care services delivers positive outcomes in quality of care and health economics.

No Decision About Me Without Me

Author(s)

Burton T, Keir S, Todd A and Visvanathan A

A summary of a number of tests of change aiming to improve the culture concerning patient inclusivity in anticipatory planning decisions in hospital care.

Nothing About Me Without Me - Involving People in Planning their Palliative Care

Author(s)

Andrew J and Gray E

Response to people with palliative care needs was ad hoc and person dependent resulting in an inequity of care across Dundee community settings.

Following money from the Dundee Integrated Care Fund a group of community staff ( nursing and social care) from a variety of agencies, carers and people with palliative care needs, developed person-centred response standards which would provide a more systematic response to people and their needs using the 5 ‘Must do with me principles’

A tool bundle was developed and tested using already recognised tools and triggers. This supported staff to identify, assess and produce an individualised care plan for that person and their carer.

A traffic light system was used to identify people needing either, intensive, intermediate or supportive care. Response times were agreed to ensure people with palliative care needs and their carers received timely visits and care could be planned according to their needs.

Staff have reported it is straightforward to use – and it is now spreading across NHS Tayside community settings.

People with palliative care needs and their carers report that they feel involved and listened to about their needs.

Project Evolution

Author(s)

Mearns J and Quinn C

This visually striking poster showcases the work carried out by the Renfrewshire Macmillan Palliative Care Project from Jan 2014 – Jan 2017. It highlights the evolution of the project through visual display from the infancy of the project through to the present day.

The poster describes through visual aids the development of the initial concept and how this was influenced by our engagement from both the general public and healthcare professionals. The findings from this engagement are summarised and displayed within the poster.

Our early work led to the creation of ‘About Me and My Care’ pack (a resource to support patients and carers co- ordinate their care), the Palliative Care Training Calendar (a resource to assist staff to find and access palliative care training) and the Electronic Concerns Checklist Resource (a resource for both healthcare professionals and patients to find support and information following an assessment using the patient centred concerns checklist).

This poster uses various methods to engage the viewers, ie text, pictures, charts and tables, wordle and includes a QR code to enable access to both the poster and our A4 information booklet electronically.

There is an A4 booklet which accompanies the poster highlighting more information on each of these components.