Table 3 A summary of how care could be coordinated to reduce the negative impacts felt by patients and carers

Patients and carers have the support of a professional coordinator

Facilitating the communication and information exchange between key stakeholders

Improves access to care (e.g. helping exchange of information between specialist and local providers)

Reduces time/burden on patients/carers associated with coordinating care and attending uncoordinated appointments

I think without me having my [condition specific] specialist nurse coordinating the care… really taking some of the weight off, and doing a lot of the bread and butter… making sure I’m where I’m meant to be at the right time, and that the right doctor has got the right information… mum doesn’t have to deal with [that]…and I’m thankful. [patient, diagnosed]

Scheduling appointments in a convenient way, to meet patient needs

Reduces time/burden on patients/carers associated with coordinating care and attending uncoordinated appointments

Acting as a point of contact, including between appointments

Improves access to care (e.g. supporting patients to access specialist advice in between appointments)

Facilitating and providing additional support when required in patient journey

Improves access to care (e.g. signposting to relevant charities)

The organisation of appointments meets the needs of patients and carers

Locally and remotely where possible

Reduces time/burden on patients/carers associated with attending uncoordinated appointments

…there are instances where it has been coordinated well by being able to condense all my appointments into one day, which is obviously much kinder on the bank balance… Obviously, it’s got a financial cost, but there’s a physical cost there, you know, having to go to extra appointments when I needn’t have to. [patient, diagnosed]

Scheduled at convenient times (supported by a care coordinator or use of online booking system)

Reduces time/burden on patients/carers associated with attending uncoordinated appointments and coordinating care

A range of services and professionals can be accessed in one visit

Improves access to care (e.g. care is more timely)

Reduces time/burden on patients/carers associated with attending uncoordinated appointments

Stakeholders communicate effectively

Multi-disciplinary teams

Improves access to care (e.g. medical and non-medical aspects of care are considered)

Reduces time/burden on patients/carers associated with attending uncoordinated appointments and coordinating care

They normally ring me about a month before the appointment, 'Here's the list of everybody we think is currently involved with [son’s name], is this right?' which is really useful…We have a meeting for about an hour or so… The paediatrician is normally the person that leads the meeting… then she'll make some recommendations in terms of what she wants to see happen next… They are actually quite handy, those meetings, just to make sure that everybody knows what's going on. [carer, undiagnosed]

Patients have written care plans (including plans for acute episodes)

Improves access to care (e.g. facilitating proactive approach to care)

Reduces time/burden on patients/carers associated with coordinating care

Patients, carers and professionals have a point of contact for specialist advice/liaison

Improves access to care (e.g. patients could access specialist information to guide self-care decisions when necessary)

[respondent’s daughter]’s got her metabolic disorder guidelines, so when we go to A&E, we've kind of got a triage pass to get into triage straight away so that we don’t have to be hanging around waiting. [carer , diagnosed]

Technology is used to improve communication (including between specialists and local providers)

Improves access to care (e.g. local providers such as GPs and staff in Emergency Departments could access specialist information to guide care decisions when necessary)

Reduces time/burden on patients/carers associated with coordinating care