PID Transition Guidance

Transcription

1 PID Transition Guidance Guidance for SPAIIN professionals caring for children and young people with PID Transitioning from Children and Young peoples Healthcare Services to Adult Services in Scotland 1

2 APPROVALS COVER SHEET Name of Guidance Transition of Children and Young People with PID to Adult Healthcare Approving Body Scottish Paediatric and Adolescent Infection and Immunology Network (SPAIIN) Lead Authors CNS/ Lead Clinician/ SPAIIN Manager Scope Consultation Communications Plan This guidance applies to staff within SPAIIN Consultation will take place with SPAIIN Steering Group & SPAIIN members. This guidance will be available to all staff via SPAIIN website. Finance Sustainability Risk Service Delivery There may cost implications for clinics to include transition plans in patient management plans Key worker essential The risk of not developing PID transition guideline includes the loss of confidence in healthcare in young people with ongoing healthcare needs. This in turn impacts negatively on their health and healthcare. Staff will have more understanding of PID transition and the need to support young people and their families in this process. 2

3 Contents 1. About PID About Transition Preparing for Transition Stages of Transition Effective Transition for Young People Referral letters Home Therapy Clinic at Adult services References

4 1. About PID Primary Immunodeficiency (PID) is an umbrella term used to describe a large variety of conditions, which have a broad range of severity. They are chronic conditions usually requiring life-long monitoring and treatment. The UK Department of Health (March 2004) defines a chronic disease as: those that can only be controlled and not, at present, cured. A diagnosis of PID can have a significant impact on a persons quality of life, both health related and socially. This burden can be felt more acutely by the adolescent due to the complex adjustment issues experienced at this time. For any young person this period is characterised by establishing ones own identity, leaving education and starting employment, developing adult relationships and becoming independent (Department of Health, 2008). For the Young person with PID this will also include assuming responsibility for their own health care needs. Any young person being looked after by one centre over a period of time will develop a relationship of familiarity and, hopefully, trust. The young person and their family will come to understand what can be expected from their Immunology team and also what is expected of them. Continuity with staff, methods of treatment, location and other service provision provides reassurance that their needs will be catered for in a manner acceptable to them. Any significant change or disruption to this provision can be stressful and confusing and may affect care delivery. For this reason a coordinated approach to transition is required from both paediatric and adult centres. 2. About Transition Transition means the process involved in planning and moving care from one service to another. Within the NHS, this usually means from children s to adult services. Transition is different to transfer which is a quick and simple task. Transition can be defined as: a purposeful, planned process that addresses the medical, psychosocial, emotional and vocational needs of adolescents with chronic physical and medical conditions as they move from child centred to adult oriented healthcare systems. (Society of Adolescent Medicine 2003) In Scotland, two government reports have been published which are key to progressing transition: 4

5 The first, Think Transition (2008), sets out the importance of transition, generic issues including the core principles of transition, education and independence and inequalities in health and also patient specific issues for certain medical specialities (cystic fibrosis, chronic renal disease, type 1 diabetes, childhood cancer survivors). The report states that: the ultimate goal is to embed transition care as part of adolescent health provision. (RCPE, 2008) The second government report, Better Health Batter Care Hospital Services for Young People in Scotland (BHBC) was published in It followed a review of the care of young people in hospital led by the Scottish Government Health Department and has both strategic and operational recommendations. The Policy on the Care of Young People (2011) which should be used in conjunction with this transition guidance. The Equality Act (2010) requires each patient to be treated as an individual so their unique needs can be identified and met within health care. Account needs to be taken of age, disability, gender, sexual orientation, spiritual belief and culture, and in NHSGGC, social inequalities. This means that all young people have the same right to their needs being identified and met within the health care system and it applies to all young people cared for within SPAIIN In addition, the Report of the National Review of Services for Disabled Children and Action for Sick Children (Scotland) (ASC(S)) both highlight the principle of protecting children and young people s rights under the UN Convention on the Rights of the Child (1989) when providing services (Scottish Government, 2011; ASC(S), 2008). Meeting the individual needs of each young person is essential for all care, including effective transition, and such patient centred care should be accessible to all patients. 3. Preparing for Transition There is no specific date or time period when the process of transition should start as it can be thought of as a continuum with no definite beginning or end flexibility is especially important. Choosing the right time will depend on the individual circumstances of each young person and may be delayed for reasons such as an acute episode of illness or an unsettled family environment. Other factors to consider include the young person level of understanding of their underlying condition, relative maturity, level of independence and family support. When there is a younger sibling with the same condition and likely to be transitioned in the next few years, it may be appropriate to defer transition of the older sibling until such time as both can be transitioned together. As a general guide, however, discussion between young person and immunology team should be 5

6 undertaken around years of age to coincide with a move from primary to secondary education. The transition integrated care pathway should be initiated) and used to cover relevant topics and is an opportunity to highlight any issues that may prevent establishing an effective care pathway, an absence of which can lead to decreased compliance and have an adverse effect on patient health throughout the transition process (Dovey-Pearce et al, 2005). As a guide early transition is from 12-14years mid transition 14-16years late transition 16+ years 4. Stages of Transition Early Middle and Late Transition Stages During early and middle transition the pathway should be completed by the paediatric immunology team. During late transition the young person should be introduced to the adult immunology healthcare team in the paediatric setting (McDonagh and Viner 2004) to discuss in depth the practicalities of transition to adult health services. 5. Effective Transition for Young People Allowing for the fact that young people are undergoing changes which are broader than simply their clinical needs Being flexible with the process to meet the needs of each individual protecting their rights to high quality health care, age appropriate information, involvement in decision making and access to education. Involving young people in decisions and plans and asking them for their views being engaged with and involved in their own transition process, and being empowered to work effectively in partnership, giving them a sense of the chance of non-compliance with treatment after moving to adult services. Learning to take responsibility and understand the consequences for their decisions when it comes to risk taking knowing who is responsible for their care i.e. their key worker. Having any additional support in place for vulnerable young people understanding the different models of care in children s and adult services. Developing independence as part of the process by learning decision making skills, self care, self medication, attending consultations at age specific clinics where possible separately from young children or with adults and at times which do not interfere with their education. 6

7 Ensuring that young people are not transferred completely to adult services until they have the necessary skills to function in that model of care (Scottish Government, 2010; Leather, 2009; RCPE, 2008;Viner, 2008; RCN, 2004; RCPCH, 2003; UNCRC, 1989) 6. Referral letters Should include information listed in Appendix 2 accordingly and copied to all members of the healthcare team in both paediatric and adult settings. 7. Home Therapy Young people already established on home therapy by paediatric services will need to have immunoglobulin prescribing taken over by adult services. Timing of this must be arranged properly to ensure IV or SCIG supply is maintained and no infusions missed. It must be explained to the young person/family that their delivery arrangements may change and any new details given. Key worker from paediatric and adult services must work closely to ensure a seamless transfer of therapy arrangements.. Prescribing will remain the responsibility of paediatric services until after the young person s first visit to the Adult Services 8. Clinic at Adult services Key worker from paediatric services should attend first appointment with young person in adult setting 9. References Better Health Better Care: National Delivery Plan for Children and Young People s Specialist Services in Scotland (2009) Blum R, Haydock P & Gallay L. (2005) Moving into Adulthood for Youth with Disabilities and Serious Health Concerns. Network on Transitions to Adulthood Policy Brief,Issue 26. Department of Health. (2008) Transition: moving on well. A good practice guide for health professionals and their partners on transition planning for young people with complex health needs or a disability. Dovey-Pearce G, Hurrell R, May C, Walker C, Doherty Y. (2005)Young adults (16-25 years) suggestions for providing developmentally 7

8 appropriate diabetes services: a qualitative study. Health Soc Care Community. 13(5): Equality Act Scotland (2010) Mcdonagh J Viner R (2004) Adolescence and Transition Clinincla Presentations of Rheumatic Disease Royal College of Physicians of Edinburgh (RCPE) Transition Steering Group (2008) Think Transition. Developing the essential link between paediatric and adult care Edinburgh: RCPE Royal College of Nursing. (2004) Adolescent transition care: Guidance for nursing staff. Society of Adolescent Medicine (2003) Definition of transition Scottish Government (2011) Report of the National Review of Services fordisabledchildren UNCRC (United Nations Convention on the Rights of the Child) (1989) Viner R (2008) Transition of care from paediatric to adult service: one part of improved heath services for adolescents Archives of Disease in Childhood 93, Viner R and Keane M (1998) Youth Matters. Evidence based best practice for the care of young people in hospital. London: Action for Sick Children Appendix 1 Immunology Transition Pathway Appendix 2 Transfer Letter Requirements for Immunology Patients from Paediatric to Adult Healthcare Diagnosis, with genetic details if available and date Medication including previous immunosuppressive and chemo drugs Lab values including at diagnoses/before treatment initiation and current Dates and copies of recent lung function, CT chest etc Family history where relevant IVIg or SCIg dose/frequency details Comment on compliance or relevant social history Infection history including particular bugs found Vaccination history Date of onset of symptoms Which diagnoses are still active and which are previous history/resolved Known Allergies Previously failed therapeutic approaches Previously successful therapeutic approaches which are currently not needed 8

9 Family history Contact numbers on patient, or parents/carer if needed 9