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)

• What is transition• Barriers to transition• Transition in areas with no commissioned

adult service• Providing specialist care in areas with no

commissioned adult service

Transition is a transfer of care:

Paediatric team to Adult team

Parent to Patient

Transition is a transfer of care:

‘Good’ Transition

• Planned• Gradual process • Adjusted to patient maturity• Agreed by patient, family, and both paediatric

and adult health teams

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

Adult IMD services

Paediatric IMD services

NHSE-commissioned regional IMD services

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

• 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

Adult care

Paediatric care

Community and social

care

Patients and

families

Excellent communication is essential

Transition in areas with no commissioned adult service

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

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

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

“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

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

• 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

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

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

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

Hospital teams

Family / carers

General practitioner

Patient society

Community health professionals- Nurses- Physiotherapists- Dieticians

School / college