Supporting information

EB CNS role

Introduction

The EB service atGuys& St Thomas’(GSTT) is one of two adult centres in England for thecare of adults with EB.It is seen as a leading clinical service and a source of expert advice for the diagnosis and management of people with EB. The service is funded by Highly Specialised Services, NHS England and is led by four consultants. The patients are managed by a multi-disciplinary team that includes support from dietician, psychotherapist, hand therapist, physiotherapist, pain management, podiatry, plastic surgery, interventional radiology, gastroenterology, dental, ophthalmology and oncology.

EB Nursing service

The EB nursing service was established over 36 years ago by DEBRA (patient support charity), the core of which is now funded by NHS. DEBRA continues to support this service with 25% funding for non-coreactivities.

The role of the EB nursing team is that of mediator in accordance with the National EB Service Nursing Principles 2013, agreed with National Highly Specialised Commissioning Team, GSTT and DEBRA and the 2013/14 NHS standard contract for EB services.

The expectations of the nursing service are to provide support both in the community and the hospital setting, comprising of both core and non core activities.The outreach service is fundamental to providing the best possible care and is an integral part of the service.

The nursing team consists of 6 CNS’s each of whom manage their own case load of complex patients. In addition they collectively manage less complex patients when the individual need arises. The team provide service cover Monday to Friday8am to 6pm including hospital cover on a rotational basis.

Each CNS is home based across southern UKwithin easy reach of London. There is an expectation that the CNS will have a flexible attitude and approach to work as long days and travelare often required.

Setting of standards

The GSTT EB nursing service is recognisedinternationally as providing a gold standard of care to patients with EB. We provide clinical leadership and advanced expertise and skills in managing patients with this highly complex disease.We regularly share that expertise and leadership internally, nationally and internationally.

Role of EB CNS

The EB CNSteam play a key role in developing the specialist EB service across the organisation. They assist in the management of a cohort of patients referred for specialist diagnosis, assessment, intervention, care and support. They demonstrate highly developed specialist knowledge and skills through innovative practice leading to the development of increasing levels of autonomy. In addition we provide non-core support to patients with EB and DEBRA as set out in the Nursing Service Level Agreement (SLA).

Principles duties and responsibilities

Core Nursing Priorities / Definition
Manage & prioritise workload / To meet needs of patients & the service
Provide cover for EB nursing service as appropriate
Manage a defined caseload in agreement with the Lead EB CNS & where necessary, to travel within the UK
Outpatient care
EB clinics Multi-Disciplinary clinics
Less complex patient clinics
Nurse led clinics / Supportoutpatient clinics providing advice or direct care
Inpatient/hospital support / General EB inpatient support
Direct patient contact for day cases & inpatients
Accompany patients to theatre/clinical procedures
Support health care professionals (HCP) to deliver care (advise, train and co-work)
Home visits / Visit complex patients at home minimum of twice a year to undertake a full skin inspection & assessment of physical needs
To provide expert advice & support
To update clinicians as necessary of patients status
Outreach within appropriate geographical area / Consultant led outreach clinics 3 per year
Outreach delivered as direct care, advice supporting local HCP & care providers & the wider NHS
Transition support / Provide advice, support & guidance throughout transition to adult services
Work in collaboration with colleagues at Great Ormond Street Hospital
Genetic Counselling Pre-natal diagnosis advice / Provide general advice, signpost to appropriate local services co-ordinate care where necessary
Palliative & end of life care / Signpost patients/ families to available resources. Support/ educate / liaise with local services/ providers to deliver EB aspect of palliative care
Bereavement support / Undertake one bereavement visit post death of EB patient if required
Teaching healthcare professionals / Teaching HCP/carers/ families on EB management
Administration / Writing clinic & home visit letters,
If service co-ordinator not available take responsibility forco-ordinating patient care, liaise with HCP & managerial colleagues
Contributing to service improvement & working closely with support services
Professional Training & development / Professional development in line with job description & NHS study leave policy & agreement

Outline of non-core activities

Non-Core functions / Definition
Bereavement support / Additional support as required after initial visit as described in SLA
Charitable functions /activities / Awareness raising in the public arena, places of work & general audiences
Attending DEBRA activities & fundraising events
Provide nursing & practical support to patients attending DEBRA funded activities
Research/audit / Assist in research
assist in audit monitoring for the improvement of care
Product development/ evaluation / Evaluation of products for their suitability for use by patients with EB in conjunction with business partners
Publications / Writing for publications, articles, posters presentations,guideline development, patient information
Professional development / Attending national and international conferences and meetings
Training & teaching / Training of carers
Teaching in wider arena i.e. conferences & international meetings
Quarterly four centre meeting / Attend meetings in 4 centres, travel necessary