Virtual care coordination for people diagnosed with intellectual disability and comorbidities: improving patient safety and health care outcomes

A recommendation for a named person to co-ordinate care for those with intellectual disabilities (ID) and comorbidities was set out in the Confidential Inquiry into the deaths of people with learning disabilities (CIPOLD) in order to prevent premature and preventable deaths.

A close examination of the NICE quality standards as part of a structured process facilitated the hospital liaison nurse (HLN) to reflect on current clinical practice for people diagnosed with intellectual disabilities (ID) coupled with comorbidities.

By assessing practice in line with Government recommendations, national standards and previous research, the HLN was able to focus on potential gaps in a specific area of practice, namely a lack of care coordination. The HLN overall goal was to effectively coordinate care across and beyond episodic reviews in line with NICE guidance. The implementation of Virtual Clinics identified new ways of clinical practice to managing and coordinating care for a vulnerable group. A range of resources based on evidenced based practice and standards were already available. These were used as a framework for measuring practice and health outcomes and improve on patient care and delivery.  

Aim:

To effectively coordinate and manage the ongoing care and support needs for people with ID coupled with two or more long-term conditions using digital technology, established assessment tools and care pathways.

Objectives:

• To implement the Virtual Clinic and lead on change in the workplace in the provision of remote, non-face to face care coordination and case management.
• To promote the government’s vision for a care system focused on delivering the best possible health outcomes for people diagnosed with ID whilst considering the strategic objectives already in existence.
• To improve the individual’s quality of life by monitoring and responding as necessary to hospital admissions, making reasonable adjustments, reducing treatment burden, adverse events and unplanned emergency admissions or uncoordinated care.
• To improve coordination of care across health and social care services, particularly if this has become fragmented via collaborative multi-agency working, joined up pathways and packages of care.
• To develop individualised care plans which will potentially avoid further and unnecessary assessments and help to prevent inappropriate investigations.
• To recognise and respond proactively to the deteriorating patient co-ordinating the care by using a whole systems approach in line with NICE guidelines.

The aims relate to the NICE (QS153) Quality statement 3: Named care coordinator as follows:

A named care coordinator will help adults with ID and multiple long term conditions to get the help they need from the health and social care system. The objectives set out covers and identify the care coordinator as a key person in the care planning process to ensure the individual obtains the services they need in a timely way. They also ensure that the individual and/or their carer have all the information they need to manage the condition and allows for future planning.

The aim relates to the NICE (NG56) Multi-morbidity: clinical assessment and management as follows:

A named care coordinator will help adults with ID and multiple long term conditions by carrying out baseline assessments, reducing treatment burden, reviewing and monitoring medication and responding to emergency admissions.

Prior to the implementation of Virtual Clinics, limited opportunities existed and there appeared to be neither a standardised coordinated seamless process nor individualised paperwork or care plans shared between multi-agencies, for this vulnerable group of people. A period of analysis, self-assessment and reflective practice accentuated the lack of joined up working and gaps across the ID services within both health and social care settings and formed the baseline which needed to change. For conversely, without reflective practice and a named care coordinator, given the existing inequalities in health care and premature deaths, the management of health and social care for people diagnosed with ID coupled with long term conditions would continue to be fragmented.

Improving efficiency:

From the HLN view point, the project for effective and fully integrated care coordination was primarily about individual patient safety, quality and health improvement rather than saving or reducing costs.

Demographics:

Mid Essex Hospital Trust provides local elective and emergency services to approximately 371,000 people. Whereby, the current case load held by the HLN indicates that there is a current ID population of 1,274 living within the geographical area of Mid Essex. A register/database is maintained and held centrally by the HLN and further scrutiny indicates a small increase year on year, which overtime could potentially have an impact across many public services.

Implementation:

Initially, agreement to set up, manage and evaluate a nurse led clinic was reached with the approval of the Director of Nursing in the acute trust at MEHT. This was during a period of annual appraisal and on commencement of DProf studies with an agreed proviso:

• To continue to monitor and respond proactively to all hospital activity for people with ID and long-term conditions - monitor health appointments/hospital admissions in line with ID contract.
• To act as a change agent, by leading, planning, developing the service and liaison role – use of a wide range of data collection, audit and evidenced based practice.
• To set up, implement and manage a Virtual Clinic over an 18month period and share the outcomes with health and social care professionals as appropriate.
• Proposed Interventions used – consultancy, clinical assessment, health facilitation, investigations, advanced level decision making, case management and care coordination.
• To close the loop with the completion of final research thesis - covering a six year part time DProf (post graduate researcher).

Patient/carer/stakeholder involvement:

The work-based project was undertaken during a time of a rapidly changing working environment. Historically, many carers and care providers had expressed their frustrations to the HLN when supporting a highly complex patient group who had presented with revolving door - hospital admissions. For they perceived that they continually faced poor communication across both health and social care services. Further examples of their exasperation were given in relation to repeating the same information in relation to history taking; repeated medical investigations and a perceived lack of joined up, holistic care.

The HLN involved a few consenting individuals, carers and care providers in shaping the new care coordinated service as the needs arose from admissions to inpatient services. Their ongoing engagement and involvement in making decisions about individual care and support needs was received positively and moving forward will perhaps lead to better outcomes and continue to shape the future ID service.  

Initial Set Up and Administration:

• New patients – (allow 4hrs) Identify from the liaison nurse data base/inpatient status, the people diagnosed with ID who have two or more long term conditions. Gather data to establish a current baseline since recent hospital admission - review clinical information/dates of diagnosis/check all previous hospital admissions/drug history - list of medications/establish professionals involved/obtain contact details.
• Introduce the Virtual Clinics – offer information leaflet to eligible inpatients/care providers in the hospital setting – agree and obtain written consent/use MCA key principles.
• Identify and make contact with the key leaders within the various health and social care pathways including care providers – offer information leaflet.
• Identify patient baseline - checks made on date of previous Annual Health Checks/Health Action Plans – hospital passports.
• Identify the long-term condition and the predictable clinical course, ensuring relevant NICE pathways and national guidance is adopted.  
• Set up individualised care plans – establish patient wishes and document date of confirmed diagnosis/investigations and treatment carried out of the long term condition.
• Adapt the key development assessment tools already in existence.
• Set up Consultancy templates – new patient notes; returning patients; MDT meeting notes and GP letters.
• Establish and promote the individual/teams preferred virtual platforms including telephone or telehealth; MSTeams/Star leaf/Smart Crowd/Skype for individuals and groups.

Clinic Schedules:

• Schedule regular appointment slots (3/12) based on mutual times, individual/carers availability –
• Nurse to patient ratio = 15-20 minute time slots
• Nurse to carer/provider ratio = 5-10 minute slots
• Returning patients - frequency of appointments changes according to follow up outcomes and/or actions required – decisions based on previous consultation.
• Frequency will also change where a crisis occurs and the individual is hospitalised.
• Document appointments/consenting procedures and contacts on Lorenzo – or established Patient Information System.
  

Clinic Consultation:

• The liaison nurse starts the appointment with the preferred link and accepts the individual and/or carer to participate.
• Verbal consent must be obtained and documented each time, for all telephone and video visits and to share information.
• The consultation begins and monitoring is based on a set of three main questions – which establishes; changes in medication, significant changes in support needs and changes in behaviours.
• There may be further questions asked/information shared/advise and support offered according to the responses given throughout the consultation period.
• Regularly review of the individualised care plan.
• Next appointment scheduled accordingly.
• Patient documents/care plans are updated and actions noted for any follow up care.
• All documented outcomes from the virtual clinic are uploaded onto Lorenzo - or established Patient Information System.

Follow Up Arrangements:

• Further actions and processes for workflows and further assessments is carried out by the HLN and takes place in the following days post virtual clinic.
• Follow up reviews are planned for 3/12 – unless hospitalised (then an earlier review is indicated and may involve the wider MDT).
• Where negative responses are given indicating no changes to the three main questions, then no further action is required and a further follow up review is booked for next 3/12.
• Where positive responses are given to any one of the three main questions then further diagnostic review or assessment is indicated. Examples include - scheduling of imaging, blood tests and further health appointments are made with further contact and follow up made with the individual/carer.
• Where there are positive indicators of health deterioration and/or change of support needs – the individual will require urgent follow up care across multi-agencies. Telephone contact is made to expedite this – signpost/refer on to the appropriate professionals – the HLN makes clinical decisions.
• Where responses are given to the three main questions which are inconclusive then further assessments are still required and/or signpost/refer on to the appropriate professionals for monitoring purposes.
• Where significant changes in care and support needs are evident a timely virtual MDT is arranged and invites sent out which includes the GP for further discussion and agreed action.
• Collaborative working with other professionals - discussions from MDT and agreed procedural plans are then actioned and shared.
• The GP is notified of all outcomes via clinic letter/electronic summary.

Challenges faced:

There were a number of problems faced throughout the project which resulted in need for redesign or change of approach to overcome this as follows:

1. Gaining consent for the care providers to discuss health issues and share information on their service users. This was overcome by using the CHC framework either asking the individual directly or making a best interest decision in line with legislation as appropriate.
2. Checking whether the person has a representative who has a valid Lasting Power of Attorney for Health and Welfare/Guardianship or is a Court Appointed Deputy. A copy would be requested and the named representative makes the Best Interest Decision to proceed or not with the assessments/information sharing.
3. Difficulties in keeping up with all the changes in medications which included variations across patient IT systems – this was overcome by establishing a baseline, good history taking, asking the same set of three determined questions at every consultation and gaining authority (shared agreements) to access other IT systems used in primary settings.
4. The virtual service was not a commissioned service therefore, some actions often required no more than a referral back to the GP service and/or reliance on the patient’s/care provider to request ancillary services from the GP on advise offered.  
5. There was inadequate information shared on changes to individual needs across primary, secondary, tertiary health and social care amongst specialisms. This was overcome by the ongoing MDT reviews and establishing the key role of the named care coordinator.
6. Managing life-work-study balance has been a challenge, as throughout the duration of the work based project, the liaison nurse was still working full time with normal expectations on capacity and performance. This led to the liaison nurse working long hours outside of contracted hours, which was overcome partially with the help of a part time voluntary administrator and negotiated flexi working arrangements made with the Director of Nursing.
7. Video conferencing and links across multi-agency services have been challenging at times as not all services use or can access the same platforms. Confidentiality and privacy issues are of particular concern. To ensure data protection and compliance this has been overcome by working collaboratively with IT departments and where risks are apparent agreement reached to only using telephone conference calls.
8. The recent merger of the three Trusts has resulted in challenges arising relating to the ongoing changes to organisational management structures and work roles. This has not yet been overcome, although as a reflective practitioner, there is an opportunity to think differently, encompass the new service and consider ways on how the virtual clinic can be integrated across sites.

Costs:

The virtual clinic and coordinated practice were not commissioned services and the HLN is a lone worker who continued to work full time with normal expectations on capacity and performance. Therefore, the only costs that were incurred related to the time given by the HLN, who worked longer than the contracted hours on a voluntary basis and was happy to do so. It is proposed that this will change in the future with the further development of a strong business case and engagement from commissioners.  

The project fulfilled its purpose and met the initial aims and objectives in the short term. Overall, the Virtual Clinic was received positively and moving forward engagement and backing from commissioning teams would be required for longer term results based on measurement and audit of the standards and outcomes.

Key Findings and Main Results:

• People with ID are flagged on the patient IT systems and therefore can be easily identified - those diagnosed with two or more long term conditions can be established from the HLN data base.
• Although limited, acceptance of coordinating care from the perspectives of care providers and professionals was generally positive.
• Improved engagement from individuals who had previously had high incidences of missing their appointments (DNA).
• There appears to be great potential for the use of virtual remote consulting and clinical management and coordination to be rolled out across the region.
• It can be used in a variety of settings – as the medical diagnosis is already established and treatment plans/prescribed medication are ascertained.
• Telephone or tele health clinic is the simplest to set up and conduct. It is also timely, practical, cost effective and proactive.
• Significant improvements were made with communications between hospital and care providers this also expanded to establishing working professional relationships.
• There are practical benefits to patients and care providers which will need further and ongoing service evaluation and thematic analysis.
• The HLN has the ability to easily identify the person with ID in the hospital setting and is able to add key information on to the patient IT systems including the standardised paperwork/individualised care plan.
• The HLN was viewed as a named/key person across multi-agency staff and care providers (described as the “go to person”) thus allowing for total acceptance and complete multi-disciplinary approach to be adopted.
• The provision of clear documentation enabled information to be readily available and shared to those who needed it. This allowed the patient access to the care required without unnecessary distress or disruption.
• The hospital culture of over investigation and over treatment was evident especially where individuals were frail and receiving palliative care. The HLN was able to advocate on behalf of the patient - sharing their wishes and offering advice and assistance to clinicians, in order to prevent unnecessary hospital admissions and investigations where it is not deemed appropriate.

This project is still in its infancy. It is still early days in terms of audit and data reflecting key changes in practices and ID services. Overall, acceptance and willingness from patients and carers on a new way of remote working has been one of the most important findings of this project and this has been echoed across multi-agencies.

Currently, the virtual service to coordinate care would remain the same with no plans in place to change the process. However, moving forward some aspects of the Virtual Clinic may well change over time to be successful, with additional admin and financial support. Ongoing review of all the data in line with NICE guidance, NICE quality standards and CQC standards will assist the HLN in measuring progress and build up a body of evidence of the success of any interventions made.

Key Learning:

• There are difficulties in diagnosing some conditions in individuals with ID especially if they have extremely limited communication or the features do not fit exactly with ‘typical’ clinical criteria. Hence, the need for close monitoring and regular care review, in order that any subtle changes in cognition and/or behaviour can be picked up quickly.
• The initial consultation is about an introduction; a fact-finding meeting, history taking, sharing information, setting out the objectives from individuals view points and gaining consent in advance. This can be timely but is a key component to enabling the delivery of high quality care, allowing a better insight and understanding of the individual’s health problems. This base knowledge is then used to identify and prioritise care which ensures appropriate interventions are made in which to optimise health outcomes.
• It is important to involve key share-holders at every stage of implementation and identify the gaps – ensure you have admin/secretarial support.
• Make reasonable adjustments where required to ensure individuals are not disadvantaged in any way in line with the Equality Act (2010).
• Keep the virtual clinic consultation focused and deliver on the action points in a timely fashion –be aware that it is easy for individuals with ID to view the clinic as a social call.
• Ensure information and resources on the virtual clinic are readily available and the communication preferences are noted on the patient systems in line with the Accessible Information Standards.
• Engagement across individuals and multiple teams can vary and may require adjustment and flexibility.
• Problems can arise with a service that is led by one person or being the “go to person”. Identify your value but this should not equate to the HLN doing everything.
• Write up a strategic action plan – write lists of tasks that need to be achieved in order to meet the patient goals and objectives - collate the data, measure improvement and document regularly within a report.
• It is worth noting that there are occasions when Virtual clinics can also escalate to face to face appointments – adjustments where needed.
• It should not be assumed that this vulnerable group cannot participate in virtual appointments or agree individualised plans albeit sometimes with support of others.
• Electronic processes/resources used can be designed relatively cheaply and can be enduring.