Getting it right first time: developing a standard approach to care for people living with Motor Neurone Disease in Greater Manchester

The aim of this project was to develop an integrated care pathway (ICP) which described an ideal service for people living with Motor Neurone Disease (MND) in the Greater Manchester area.

This could then be used to evaluate the service and to identify the areas that required development. The specific aims were to:

• Detail essential steps in the care of people living with MND
• Facilitate translation of national guidelines into local protocols and everyday practice.
• Minimise variance in care across numerous services and Clinical Commissioning Groups.
• ‘Level up’ so that individual patients and clients all receive the best standard of care available.
• Manage clinical risk and meet the requirements of clinical governance.
• Support evidence-based clinical practice
• Support multidisciplinary care and sequence the actions of a multidisciplinary team
• Support accurate forecasting and setting of priorities

An integrated care pathway is a multidisciplinary outline of anticipated care, placed in an appropriate time-frame, to help a patient with a specific condition or set of symptoms move progressively through a clinical experience to positive outcomes (Middleton, et al 2001). As a large component of management relates to palliative care, it was felt appropriate to align the pathway to the Northwest End of Life Care Model.

The Manchester MND Care Centre supports everyone with a diagnosis of MND in GM and surrounding areas. There is an average caseload of 230 people, covering a population of 3.2 million. Care for people with MND is provided by the Care Centre, community services, the regional Long Term Ventilation Service (LTVS), a regional genetics service and palliative care services.

There is a hub and spoke model of care with the Care Centre maintaining an overview of patients and managing the medical aspects of care. Management of non-invasive ventilation and cough augmentation is carried out by the LTVS. There is a shared care model for symptom management between the Care Centre and community teams.

The Care Centre is currently involved in research and the vision is to expand this as it becomes a major site for the MND-Smart clinical trials. With this in mind, it is vital to have clear pathways and processes in place.

An audit of care was carried out, using the MND Association Transforming Care Audit tool, which benchmarked the service against NG42. The audit demonstrated an inconsistent approach to provision of some treatments and assessment. For example, measurement of Peak Cough Flow and teaching of assisted cough and breathing techniques.

There has been a lack of clarity as to where the responsibility for certain elements of care sits. For example, who holds discussions about advanced planning? This potentially sits with both the Care Centre and the community teams and it is crucial that good quality communication ensures that these discussions are carried out effectively.

A review of services showed variation in levels of service provision across the region. For example, provision of wheelchairs, orthotics, dietetics, psychology, palliative care and community therapy and nursing. These in turn, are commissioned by a number of organisations with differing structures and referral criteria. NHS Right Care has recently published a commissioning toolkit for long term neurological conditions which highlighted the need for a consistent team of multidisciplinary and personal care workers who can ensure familiarity with the person with MND and their specific needs. This would provide consistency of care and enable close monitoring of rapidly-changing needs.

It was agreed by the team, that it was necessary to understand what an ideal service looked like with the development of  an Integrated Care Pathway, so that these variations could be addressed.

The basis for the development of the ICP was the NICE guideline, NG42. This defined the key areas that the pathway needed to cover. A 10-step framework was used to develop the pathway, (Flores, et al, 2019).

Phase 1

1). Clinical engagement – there was strong commitment from clinicians to develop a clear pathway, with a shared enthusiasm to ensure the best quality care for people with MND.

2). Stake holder group engagement – there was input from the MND multi-disciplinary team and involvement from a palliative care consultant and community staff. As part of the Transforming Care Audit, patient surveys were carried out to ask their views about services. Views of service users will continue to be sought as we develop the specific areas of the pathway.

Phase 2 – Evidence gathering

3). Conduct a rapid evidence review of existing guidelines and pathways - the principle guideline is the NICE guideline 42 developed from a detailed review of the literature and evidence at that time. Other guidelines used were the North West End of Life model, the British Thoracic Society guidelines for Neuromuscular Conditions and the NHS Right Care Progressive Neurological Conditions Toolkit which indicates the standards against which services should be commissioned.

4). Develop an initial prototype pathway - an overview of services was described and a model of care was developed which illustrated the services provided in a way that would align with NG42 and our current structures.

5). Share the pathway with stakeholders - the pathway was shared and discussed with the Care Centre MDT, community teams at a study day and at an MNDA branch meeting.

6). Ongoing reviews of clinical guidance, literature and stakeholder experience - care has been taken to ensure that consideration of any new guidance is taken into account, in particular, the NHS Right Care Progressive Neurological Conditions Toolkit which has recently been published.

7). Update the pathway prototype and refine asynchronously - there were a number of versions of the pathway which were altered to add clarity and to ensure completeness

8). Update the final pathway, including references to relevant guidelines and reports, pathway owner, the key stakeholder group, publication date, description and key metrics.

Phase 3

9). Disseminate the pathway and develop a messaging plan

10). Monitor the pathway introduction – measure against the guidelines identified in Phase 1 using the Transforming Care Audit and patient experience.

Phases 1 and 2 have been completed and phase 3 is currently underway. An overview pathway for people living with MND in Greater Manchester was produced and shared via the MNDA website. This is available by clicking here. 

The process of developing the pathway has highlighted the areas where there are shortcomings. Going forwards, there are plans in place for workshops with stakeholder teams to establish how we ensure that the pathway is implemented, as it requires an integrated team approach.

Alongside this, work is being carried out to develop and expand on specific areas of the pathway. For example, the respiratory, nutrition and gastrostomy pathways. As we go forwards these pathways will be shared which will support the development and commissioning of services that come under a number of different CCGs.

The Transforming Care audit highlighted the key areas that need to be prioritised. Some areas have already been addressed, for example, ensuring that all patients have a cough peak flow measure completed and that they are taught basic breathing exercises. Others need development and future innovation.

These include:

• Ensuring that all people diagnosed with MND are offered psychological support at an appropriate time.
• Support for children and young people affected by MND.
• Ensuring that all patients who need it have a cognitive screen and that appropriate care and support are provided for people with cognitive changes.
• Further development of joint MDT clinics for particular elements of care e.g. gastrostomy and secretion management.
• Exploring the use of telemedicine to support patients who are no longer able to travel to clinic.
• Ensuring that all patients have the opportunity to access clinical research trials.

It is vital to communicate with patients and carers to understand their vision of an ideal service and there is a plan to build further engagement with patients and carers as it is recognised that more service user engagement is required.

There is a commitment to ensuring that patients are fully aware of services that they can access. There is a need to inform patient expectations as patients may not have insight into the care and services available to them. As a result, they may not use the trigger words or questions that indicate a need to professionals.

This may result in them missing out on accessing elements of the pathway at the appropriate time. This highlights the need to ensure that patients are given sufficient information about the care that they could expect and that the professionals ask the right questions to establish the care needs. (Elphimova, et al, 2010) The vision for the service is for care closer to home with ever closer links between the Care Centre and the community teams.

This would allow mutual learning and service development, ensuring a better journey for the patient. The plan is to develop a standard/ideal level of service and care in each of the localities across GM. Identifying areas where this standard is not being achieved will allow work with local teams to understand the causes.

Training and support will be offered as necessary. However, if the issue is lack of resources then support will be given to negotiate with commissioners locally to provide the necessary services based on the most up to date evidence. It will also allow the Care Centre to look at its own practices and to establish the mechanisms for communication and best practice. The intention is to have regular meetings or teleconferences with a contact person in each of the locality teams. This would include the opportunity for Care Centre staff to outreach to liaise with community staff regarding complex patients and to further develop outreach clinics.