Haemophilia Nurse Specialist Outreach Post. Dympna Cawley Assistant Director of Nursing OLCHC
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1 Haemophilia Nurse Specialist Outreach Post Dympna Cawley Assistant Director of Nursing OLCHC
2 OLCHC (National Paediatric Centre of Excellence) Our Lady s s Children s s Hospital (OLCHC) is the National Paediatric Centre for Hereditary Coagulation Disorders. Our aim at OLCHC is to minimise hospital exposure and promote a normal quality of life by empowering children and their family to manage their condition at home with direct linkage to hospital/ community support services. Designated State of the Art In-patient/Daycare & OPD facilities Highly skilled Nurses, Drs, AHP s Play Specialist
3 Background Outreach Nursing post National Service Specification for Haemophilia & Related Conditions,, (2001) published by The Haemophilia Alliance (UK); A Haemophilia Comprehensive Care Centre should provide: 1. A home therapy programme for patients with severe haemophilia, including the administration of prophylaxis 2. Home treatment training programmes,, including home visits where appropriate. The UKHCDO audit of OLCHC Report (2006) recommended 1. The Clinical Nurse Specialists attached to the Haemophilia service should be supported in assessing the need and appropriateness of school and home visits (taking account of the wide catchments area of the Centre). 2. Community visits and a liaison service should be incorporated into their role thus ensuring continuity of care. 3. OLCHC aims to fulfill the criteria of a Comprehensive Care Haemophilia Centre by providing a specialist community nursing service, support and education in the patient s s home, primary care centers, schools and crèches ches
4 CNS remit at OLCHC OLCH employ: 2 CNS within the Haemophilia specialist service, their remit is primarily involved with: 1 CNS Outreach 1 TSO 1. Providing In-patient care 2. Monitoring and managing admissions and discharges 3. coordination of out-patient activity 4. Training and education of nurses, doctors and allied healthcare professionals 5. Training and education of children and their carers/families 6. Telephone service offering support and advice on the management of Haemophilia and other bleeding disorders to hospitals, GP s, PHN s and to Parents/Carers.
5 Transfusion Surveillance Officer 1. providing ongoing education to medical & nursing staff with regard to coagulation factor concentrates (CFCs) used to treat haemophilia 2. tracing of treatment episodes 3. surveillance of the administration and documentation of treatments 4. investigation of near misses and untoward CFC incidents 5. development and implementation of policies and procedures 6. Assisting with the Home Treatment Programme. 6.
6 CNS Out reach appointment Commenced 1 st November 2010 at OLCHC
7 Nursing criteria for CNS outreach Nurses providing community care for the child with severe bleeding disorders must fulfil the following criteria: 1. Registered with An Bord Altranais. 2. Is an expert within the specialty of haemophilia 3. The nurse providing community care is guided by A. Code of Professional Conduct B.The Scope of Nursing Practice Framework at all times (An Bord Altranais,, 2000)
8 INCLUSION CRITERIA The CNS will Outreach to: 1. Children with severe bleeding disorders registered on Clintech 2. Have a key liaison role with parents, maternity hospitals and primary care facilities in the neonatal period 3. Families commencing home treatment 4. Schools and childcare facilities as required Key objectives to outreach service is education & support to children & families & is the link between the patient, family and the comprehensive care team Note: Community visits may be considered in other situations if deemed necessary by the multi-disciplinary team
9 Outreach Referral Procedure at OLCHC 1. All patients considered for home treatment/ visits by the haemophilia outreach nurse must be discussed with the Consultant Haematologist in advance. 2. A written plan of care must be in the patient s s Health care record prior to the visit taking place. 3. Documentation relating to visit/education provided and issues/concerns discussed will be transcribed into the Patients HCR 4. This outreach service will be allocated on a patient/family need/priority basis. 5. Each family visit will be evaluated using Key Performance Indicators thus giving the HCP valuable information on how we can improve our service
10 Model of Care Regional & Maternity Hospitals PHN s GP s Occupation al Health Psychologi st HCA Allied Health Dietician Physio, Social Worker Medical team (OLCH) Consultant NCHD s Child And Family/ Carer Schools, Crèches, Playschoo l, Montesso ri Nursing (OLCH) DON/ADON ANP/CNS CNM/Staff Nurses Communit y Liaison Officer Chaplain cy Team Play specialist
11 Communication Methods Dear Parents, With the appointment of a third haemophilia nurse specialist in Our Lady s s Children s s Hospital, Crumlin we are now happy to offer a community service to children with severe bleeding b disorders. With this new dimension to our service, we will be able to provide advice, support and education to parents and children in the community & we hope therefore to improve care of children with bleeding disorders. Some examples of community care that will now be available are as follows 1. Continuing support and education for families commencing home treatment via portacath by providing a home visit after discharge. 2. Continuing support and education for families continuing home treatment by providing a home visit. 3. Providing support and education to schools and childcare facilities ies as required. 4. Community visits may be considered in other situations if deemed necessary by the multi-disciplinary team and can be requested by parents. Please help us to initiate this service by indicating below if you y would like to avail of a visit by the haemophilia nurse specialist to home, school or child care facility. We will then be in contact to organise a suitable date and time for the visit. Thanking you in anticipation Eibhlin Mc Laughlin/ Mary Kavanagh/ / Imelda Kelly Tel / /
12 Section A: Arrange visit by haemophilia nurse specialist NOW I,, (please give your full name) Contact phone number, Parent of (please give your child s s full name) would like a visit from the haemophilia nurse specialist. We will contact you to arrange a visit Section B: Arrange visit by haemophilia nurse specialist LATER I, (please give your full name) Contact phone number, Parent of (please give your child s s full name) would like a visit from the haemophilia nurse specialist later this t year. We will contact you to arrange a visit Section C: Visit not required I, (please give your full name) Contact phone number, Parent of (please give your child s s full name) would not like a visit from the haemophilia nurse specialist. We will not contact you.
13 1. Eibhlin Mc Laughlin/ Mary Kavanagh/ / Imelda Kelly Tel / / haemophilia.dept@olchc.ie 3. Irish Haemophilia Society 4. National council for haemophilia 4.
14 Benefits of outreach CNS post What the literiture says 1. Home Care is particularly important with children, who vary in their t capacity to cope with hospitalisation; a significant proportion of children suffer some degree of emotional disturbance due to the experience (Bonn 1994). 2. Behaviour problems may also occur with other children in the family as a result of a sibling admission. 3. Whilst it is clear from the literature that parents want their child c to be cared for at home (Martin-son et al. 1986; Chambers & Oakhill 1995), and the children generally prefer to be at home (Edwardson 1983), families are often fearful of being unable to cope with symptoms, and worried about not being able to access support when needed. 4. Parents often feel fatigue and feelings of isolation and loneliness ess (Collins et al. 1998). Positive coping strategies used by families needs exploring in detail (Bluebond-Langner 1996), and factors identified which are most cost- effective in supporting children at home.
15 Impact of Outreach Service Increase in Quality of life Decreased hospitilization Decrease loss of school days Increase in physical activities Better integration with peer groups Most children prefer home treatment by family rather than medical staff Decreased family tensions Increased feelings of security Greater flexability
16 Conclusion 1. Child & family at the centre 2. Qualiy care Audit & research 3. Audit & research 4. Hospital & Home 5. Additional Outreach Nurses
17
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