[ppt]powerpoint presentation - home - · web viewgood practice where no adult services are...
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![Page 1: [PPT]PowerPoint Presentation - Home - · Web viewGood practice where no adult services are available Charlotte Dawson Consultant in Adult Inherited Metabolic Disorders Queen Elizabeth](https://reader034.vdocuments.us/reader034/viewer/2022051508/5ab3cad37f8b9a284c8eb5d2/html5/thumbnails/1.jpg)
Good practice where no adult services are available
Charlotte DawsonConsultant in Adult Inherited Metabolic Disorders
Queen Elizabeth Hospital Birmingham(with outreach clinics in Bristol and Taunton)
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• What is transition• Barriers to transition• Transition in areas with no commissioned
adult service• Providing specialist care in areas with no
commissioned adult service
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Transition is a transfer of care:
Paediatric team to Adult team
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Parent to Patient
Transition is a transfer of care:
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‘Good’ Transition
• Planned• Gradual process • Adjusted to patient maturity• Agreed by patient, family, and both paediatric
and adult health teams
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Barriers to transition
• Protective• Centralised and
hospital-based• Long relationship
through difficult times• Familiar environment
• Larger hospitals• More dispersed care• Healthcare teams
unfamiliar with the condition
• More competition for resources
• Protective• Vulnerable adult with
complex needs• Attachment to
paediatric team• Fear of the unknown• Fear of losing control
• More competition for resources
• More dispersed care with no single care coordinator
• Different system for accessing benefits
Paediatric care Adult care
Patients and families
Community and social
care
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Adult IMD services
Paediatric IMD services
NHSE-commissioned regional IMD services
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Barriers to transition in areas with no commissioned adult service
• Protective• Centralised and
hospital-based• Long relationship
through difficult times• Familiar environment
• Larger hospitals
• More dispersed care
• Healthcare teams unfamiliar with the condition
• More competition for resources
• Protective• Vulnerable adult with
complex needs• Attachment to
paediatric team• Fear of the unknown• Fear of losing control
• More competition for resources
• More dispersed care with no single care coordinator
• Different system for accessing benefits
Paediatric care Adult care
Patients and
families
Community and social
care
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• Larger hospitals• More dispersed
care• Healthcare teams
may be unfamiliar with the condition
• More competition for resources
Adult care
• Attend at least one appointment at Children’s Hospital before transfer of care
• Enthusiastic local contact(s)
• Excellent communication with diagnostic departments (biochemistry, radiology)
• Emergency management plans and contact numbers in patients’ notes
• Flexible and pragmatic approach to appointment frequency
• Telephone consultations available if preferred
• Patients with life-limiting conditions or complex needs are seen in home environment with involvement of community teams
• Contribute to educational opportunities
Providing care in areas with no commissioned adult service
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Adult care
Paediatric care
Community and social
care
Patients and
families
Excellent communication is essential
Transition in areas with no commissioned adult service
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Providing care in areas with no commissioned adult service
Case study• 20 year-old male• San filippo syndrome (MPS Type IIIa)• Lived in Wiltshire• Paediatric care at GOS
• Care transferred to adult services aged 18• Parents no longer able to bring him up to London
• Lost to follow-up for two years
• GP contacted department to say he was having frequent seizures, severe movement disorder, recurrent chest infections and hospital admissions
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What happened next?
• IMD consultant and CNS visited patient at home
• Community nurse, GP, parents and carers also present
• Discussed prognosis, likely complications and agreed that they could be managed out of hospital
• Involved local palliative care and respiratory teams
• IMD team produced document detailing how to manage complications at home signed and agreed by all involved in his care
Providing care in areas with no commissioned adult service
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And finally…..• Regular communication between GP and IMD team to advise
on medication
• Seizures and movement disorder settled
• Chest infections treated with oral antibiotics via PEG and home oxygen
• No further hospital admissions
• Died peacefully at home eleven months later
Providing care in areas with no commissioned adult service
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“Dear Dr Dawson,
Just a note to convey our thanks to yourself and Jane Lodwig for coming to see X at home. Your recommendations were really appreciated and I’m sure that X’s excellent care towards the end of his life was in part due to yourselves. “
Providing care in areas with no commissioned adult service
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Case 2
• 18 year-old with classical homocystinuria– Mild learning disability
• Paediatric care under Bristol Royal Hospital for Children (BRHC)
• Seen by consultant and nurse from Birmingham adult team in his final paediatric appointment
• Transitioned in early 2016• First adult appointment attended by nurse from BRHC• Came with both parents
Providing care in areas with no commissioned adult service
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• Homocysteine level always highly satisfactory in paediatric care
• Result on blood taken at clinic surprisingly high despite no apparent changes to medication
Providing care in areas with no commissioned adult service
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What happened next?• Adult IMD team phoned patient and spoke to him directly
– not taking medication when at college– eating burgers etc during the day
• Adult IMD team made arrangements with local hospital to have blood samples taken and sent to Bristol
• Maintained regular communication to help him understand the importance of adhering to treatment and simplified his treatment regimen
• Homocysteine level now satisfactory on less prescribed medication
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Summary• Adult care is always less centralised than
paediatric care• Difficulties with coordinating care are greater in
areas where there is no commissioned adult service
• Providing care in these areas requires:– Excellent communication – Detailed understanding of patients’ individual needs– Consideration of alternative models of care
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But it’s not perfect……
• Transition occurs at a later age in SW England• Access to IMD services is inequitable based on
ability to travel to a clinic• Many patients with IMDs in SW England are
seen by non-specialists and do not have access to 24 hour cover and other services available in specialist centres
• No overall accountability for care
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Hospital teams
Family / carers
General practitioner
Patient society
Community health professionals- Nurses- Physiotherapists- Dieticians
School / college
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