Job responsibilities
JOB PURPOSE/SUMMARY
To provide expert specialist nursing advice, education and support to patients and their families and other healthcare professionals following diagnosis of Neurofibromatosis type 1, type 2 and Schwannomatosis
Following a period of training, to help individuals and families cope with a diagnosis of NF1 or NF2. This is to be achieved by helping patients and their families to:
Comprehend medical facts including diagnosis, probable course of the disorder, and the available management.
Appreciate the way in which heredity contributes to the disorder, and the risk of recurrence in relatives
Understand the alternatives for dealing with the risk of recurrence.
Help the patient choose the course of action which to them seems most appropriate.
Make the best possible adjustment to the disorder in an affected family member and or the risk of recurrence of that disorder.
Timely access to medical and genetics expertise and screening.
To act as a significant educational resource to the wider health care system, trainees in clinical genetics and genetic counselling and the public.
This post is part of a network of specialist advisors across the UK which is supported financially by Nerve Tumours UK (Charity Numbers 1078790 and SC045051).
JOB DIMENSIONS
This post provides an exciting opportunity to provide a service to children, adults and families with neurofibromatosis type 1 and 2 in the Yorkshire and Humber region. The neurofibromatosis (NF) are a group of genetic conditions which predispose to benign and malignant tumours of the nervous system. NF1 is the commonest form of NF with a birth incidence of 1/2500. People with NF1 are at an increased frequency of a large number of medical problems, some of which are specific to NF1.
The remainder of the post is funded such that the post holder can see any patients or families with NF1 & 2, not just those with serious complications. For example, when a child is newly diagnosed with NF1 the family may benefit from input and support from the specialist nurse, but if the child is well, they do not come under the remit of the nationally commissioned service. We have therefore secured additional funding so that all families with the condition can be served.
PRINCIPAL DUTIES & AREAS OF RESPONSIBILITY
Clinical - Expert Practice
To be professionally and legally accountable for all work undertaken and to practice at an advanced level of professional autonomy and accountability that is within NF1& NF2 guidelines, LTH Trust policies and NMC code of conduct.
To provide expert specialist nursing advice, education and support to patients and their families and other healthcare professionals following diagnosis of NF1 & NF2.
To ensure continuity of a high standard of evidence based nursing care, assessing health, health related and nursing needs of children and adults with NF1 & NF2, their families and other carers by identifying and initiating appropriate steps for effective care.
To independently receive and make referrals and where appropriate order diagnostic tests in keeping with NF1 & NF2 guidelines.
Perform a health assessment including obtaining a clinical history, family history, conducting a physical examination and assessment of psychological well-being.
To undertake nurse led clinics within Yorkshire Region, both in the hospital and community setting.
To share knowledge and expertise, acting as an expert resource to others within and outside the organisation.
Use highly developed communication skills to empower patients to cope with living with a long term condition.
To be able to initiate the process of genetic counselling with clients and to determine when a couple need referral to a Genetic Counsellor
Assessment of patients of all ages with regards to social care, including liaising with social services and the wider social care setting.
Communication with Patients and families:
Elicit clients concerns and expectations. Elicit and accurately document a detailed family history. Interpret medical, family, pedigree and psychosocial history. Following initial assessment analyse risk factors and decide on correct course of action e.g. testing, screening etc.
Confirm diagnostic information and communicate information to patients and their relatives at an appropriate level following assessment of the individual situation.
Receive and provide highly complex and frequently conflicting information and manage the implications of this.
Identify and respond to emerging issues for the client and family
Identify changes of risk within the family and take responsibility for communicating and applying new scientific information for the benefit of the family over an open-ended time frame, through follow-up systems and audit measures.
Interpret and communicate normal and abnormal test results to patients and health care professionals.
Expertly communicate highly sensitive and potentially psychologically damaging information, which may cause high levels of distress e.g. breaking the bad news
Identify and manage conflict within families created by sensitive information.
Manage conflict when patients demands are incompatible with professional responsibilities and resources.
Manage patients who have great difficulty accepting a clinical diagnosis.
Use counselling skills to communicate sensitively and expertly in extremely difficult and often unexpected distressed situations, e.g.;
in the presence of language and/or cultural differences or disability requiring the aid of an interpreter
when dealing with cases where there is antagonism and anger or in a highly sensitive atmosphere.
Telling a patient that s/he has inherited NF2 a lethal incurable condition. Communicate with patients who are bereaved and provide support.
Prepare letters to patients summarising clinic consultations and giving test results using the appropriate level of detail.
Develop and utilise patient information leaflets in the departmental series
Communication with Colleagues:
Liaison with relevant colleagues in the MDT and with other colleagues locally, regionally and nationally.
Liaise with laboratory colleagues to order and communicate about genetic tests and to discuss complex test results, which are difficult to interpret.
Write letters to referring clinicians and other clinicians appropriate to that episode of care.
Liaise with medical colleagues about issues that have diagnostic or clinical complexity.
Liaise regionally and nationally with other laboratories, departments of histology, surgery and all other clinic specialties to obtain and provide information.
Liaise with Colleagues in other genetic centres to obtain and provide information and to establish understanding and cooperation
Discuss cases with ethical complexity with colleagues where appropriate
Present and teach specialist information Trust wide, regionally and nationally
Participate in departmental clinical and management meetings
Educational activities
Present findings of research, audit and clinical practice to large groups of staff or members of the public, within the Trust, regionally, nationally, or internationally.
Participate in the teaching to medical personnel, other health care professionals and members of the public.
Prepare and present clinical, psychosocial and scientific articles in departmental journal clubs, supervision journal club and at departmental teaching sessions.
Act as an educational resource for medical and other personnel attached to the NF team and associated organisations involved with patients care e.g. disability teams, voluntary bodies, and patient support groups.
Mobilise a variety of agencies and specialist services following assessment of the needs of patients. Communicate with a variety of colleagues and exercise the right to refer to these sources of help.
Perform phlebotomy in a variety of settings including home and clinical areas prior to investigations or for research purposes obtaining the appropriate informed consent beforehand.
Manage ongoing case-load using departmental follow up system and recall procedures. This may involve referring to multiple specialties.
Contribute to the development of programmes of care for NF1 & NF2 patients.
Propose changes to working practices within the NF1 and NF2 service.
Be aware of and follow accepted protocols and policies on a departmental and national level. May comment on areas where development or changes are needed and propose alternatives.
Ensure that all clinical documents are up-to-date, accurate, legible and appropriately traced and filed.
Be skilled at dictation in order to delegate appropriate work to secretarial staff in order to expedite the best use of departmental resources.
Use word processor to organize personal work within department.
Accurately record data on patient information systems when required and ensure in-house databases contain accurate information, alerting appropriate IT staff if discrepancies are noted.
Creation of databases and spreadsheets using computerised systems as clinical need arises. Use a variety of software packages for direct patient care, in order to analyze data for audit purposes and general administrative system within department.
Research and development
Undertakes audit of own clinical caseload and other areas of clinical work.
Accesses and interprets literature reviews relating to clinical practice.
Identify participants to take part in clinical research organized through the departmental research team.
The jobholder should:
Ensure clients receive a high standard of patient-centred care with particular regard to the special nature of their condition e.g. consent and confidentiality, data protection.
Have the ability to critically examine episodes of care; appraising personal involvement for the benefit of patient care and safety.
