Long Term Case Management of patients with Motor Neurone Disease within a Community Neurological Rehabilitation Team: A review of quality care within Wolverhampton

As patients with MND are multi-faceted, with a plethora of physical, cognitive and psychological symptoms they require thorough and co-ordinated case management.  Due to the nature of the rate and complexity of disease progression, this must be timely, proactive and sensitive. 

CNRT started receiving referrals for MND patients approximately 8 years ago. Over this time period with the support of the local Regional Care Development Adviser (RCDA) an MDT of clinicians from various teams seeing MND patients within Wolverhampton was formed. 

The aim of our review was to:

• Identify who should the MDT consist of and how we could involve others?
• Identify ways of improving communication within the MDT but also to other clinicians and teams that the patient may come into contact with
• Look at methods of documentation during MDT Bi-monthly meetings
• Review current CNRT documentation to ensure that we were assessing, managing and documenting the following areas, Weight; diet; nutritional intake and fluid intake; feeding and swallowing; Muscle problems; Physical function, including mobility and activities of daily living; Saliva problems; Communication; Respiratory function; Cognition; Equipment and adaptations; Planning for end of life; Psychological support.

Objectives:

• To find out if other service providers, who are not sitting directly in the MDT e.g. GP, Acute hospital, are able to find out information about the MDT’s input, the patients current issues, treatment goals, advanced planning directives and end of life plans.  If the patient is to enter secondary care, are the clinicians there able to access the patient’s primary care information?
• Are we aiming to reduce the patients need to repeat information which can be distressing, uncomfortable and unnecessary?
• Discover if we were asking the right questions.
• Are we referring to the appropriate services? Do we have a seamless service? Is it timely?  Are we able to reduce stress to the patient and family navigating a complex health and social care system?
• Preventing secondary issues to ultimately reduce unnecessary hospital admissions with constipation, UTI's, contractures, pain, pressure damage, aspiration/chest infections
• Future proofing trying to advise and ensure that the patient has dignity, choice and control over their health needs
• Reducing duplication for the patient and services to ensure cost effectiveness

The CNRT provide a service to the residents of Wolverhampton (estimated population data is 258,440) and the Seisdon peninsula (estimated population data is 60,000).  Our patient caseload on average is approximately 600.  On average the size of our active MND caseload is roughly 18/20 patients.  Before the review the MDT comprised of our RCDA, Occupational Therapist, Physiotherapist, Speech and Language Therapist, Dietician, Palliative Care Clinical Nurse Specialist (Compton Care voluntary Sector), Palliative Care Consultant, MND Clinical nurse specialist (Birmingham Regional MND Care Centre).  The MDT met bi-monthly to discuss the MND caseload.  We had identified that a review of the core multidisciplinary team members would be beneficial also that currently issues raised, our actions and to be completed by who discussed were not recorded well and that access to our information was poor outside of the MDT.   

We felt that our current assessment and screening documentation was neither particularly sensitive to the complexities of MND nor reactive to the rapid changing nature of the illness’s progression.  Thus not best facilitating clinicians in complex future care planning needs. 

We were interested in identifying what pertinent issues were being regularly reviewed, how co-ordinated our assessment processes were, if we were referring to the appropriate services in a timely way,  if we were tailoring the frequency of our assessments to the persons needs and how often, and finding a better system to record this data for sharing and audit purposes.

We hoped to achieve the following

• Benchmark current performance
• Plan cost-effective improvements
• Enhance professional practice
• Improve Multidisciplinary working and communication

●          Improve patient experience

We utilised the Transforming MND care audit tool developed by the MND Association which supports the implementation of recommendations as well as statements 1,2,3 and 5 in the NICE quality standard for MND.  The audit tool was helpful in enabling our service to gauge our level of compliance with the NICE guidelines and to focus efforts and resources in making improvements where they needed to be made.  We invited all of our MND caseload to be involved in the project, contacting them via letter to complete an anonymous questionnaire provided within the MNDA audit tool.  We offered assistance to patients to complete this questionnaire via our MNDA RCDA and provided stamped, self-addressed return envelopes. There was no cost/charge for the use of the tool.  It took approximately one hour per patient to complete the audit.

The audit tool and the accompanying patient experience surveys were completed and our results were based on 13 sets of patient notes being audited and survey responses from 8 patients.

Audit of patient records confidence level: 95%

                   maximum margin of error           +/-15%

Patient Survey confidence level                        95%

                   maximum margin of error           +/-27%

In terms of challenges faced, one of the main difficulties was scheduling time for the MDT to meet together to complete the audit.  It required that the whole team were present to complete the audit at the same time, with everyone around the table and notes/information in one place.  We had difficulty getting representation from Neurologists and dietetics due to time constraints and staffing pressures.

Themes of good practice emerged and areas for improvement, from these discussions held with the wider MDT an action plan was implemented to address key areas.  Information was shared via the Trust Clinical Governance board at all stages

Reinforced the high quality of care & support CNRT offers

• Utilise the unique skill base for each MDT professional to ensure high quality care & support
• Robust procedures in place to help support people
• Limited access to psychological support
• Need to work more collaboratively with Palliative Services
• No representative from acute Neurology Services
• Unable to fully access Dieticians’ information regarding hydration & nutrition
• Need to develop a diagnosis pathway: via NXH & QEHB
• Poor links to Dietetics in some areas

In terms of the impact the project has had & the changes we have made to increase efficiency and productivity & improve patient outcomes, CNRT have implemented the following:

• Refined our assessment paperwork specific to MND patients so that questions are more suitable, sensitive and appropriate due to the diverse nature of problems with physical function, breathing, cognition and emotion, nutrition and communication.
• Created new MND specific review paperwork that enables clinicians to be responsive to the rapid change in illness and also prompts regular review and management of the key problem areas as advised in the NICE guidelines. This new documentation has also provided a system to trigger assessments & ensure we provide timely and appropriate interventions.
• Created new MND referral checklist documentation, which can be used as a working document throughout the patient’s journey. This will ensure the patient has prompt access to essential services associated with the disease such as:  Clinical psychology and neuropsychology, Social care, Counselling, Respiratory ventilation services, Specialist palliative care, Gastroenterology, Orthotics, Wheelchair services, Assistive technology services, Alternative and augmentative communication (AAC) services.
• Reviewed the way we as an MDT share clinical information. This has been a big factor in the improvement of communication between departments and disciplines.  It has helped to reduce the impact of duplication for patients and improve co-ordination of care between the different specialists and services the patients are in contact with.
• Initiated the development of The Royal Wolverhampton NHS Trust MND pathway.
• Forged better links and relationships with RWHT Neurologist.
• Forged better links and relationships with Dieticians.
• For a future project we would like to explore the possible development of an MND patient ‘passport’.

The project has reinforced the importance of tailoring the frequency of the multidisciplinary team assessments to the person’s individual needs, with more or less frequent assessments as needed. It has ensured that we are offering a coordinated treatment for our patients with MND with a specialist MND multidisciplinary team approach.  We value the importance of having a diverse multidisciplinary team which includes healthcare professionals with expertise in MND, ensuring that we strive to achieve effective communication and coordination between all healthcare professionals involved in the person’s care and their family members and/or carer. 

We are aware that currently we have no representation from social care practitioners within our MDT, this is a future piece of work to improve links between health and social care.

Pointers we would give to other teams reviewing their MND MDT service would be the following:

• Ensure all areas of the pathway are considered during the audit
• Identify lead clinicians to assist with project development and implementation to keep it moving forwards.
• Factor in the time needed to dedicate to the review.
• Ensure that the patients are aware of the service review and are happy to actively participate in the review.
• Be open minded about the results and possible changes to the service that may be needed.