Audit proposal to address cough augmentation for people with Motor Neurone Disease (MND) - a shared resource tool

Aim and objectives: The overall aim of this project was to ascertain whether generic community physiotherapists are implementing gold standard of care relating to recommendations for cough augmentation.

1. To check which of the recommended cough augmentation techniques are considered and offered to people with MND (pwMND).
2. To confirm that cough augmentation techniques are provided in a timely manner.
3. To confirm that cough augmentation techniques are provided effectively by the physiotherapist.
4. If cough augmentation techniques were not offered to clarify the reasons for this.
5. To identify any common themes that may be preventing implementation of the NICE guideline for cough effectiveness.6.
6. . To formulate a plan to address any gaps in current service provision to ensure cough effectiveness.

UK prevalence of MND is 4,487 people: Swindon has a population of over 229,000 with an expected prevalence of 16 people with MND and an expected incidence of 5. However, the number of people supported at the auditors hospice is 21 that is 125% of the expected UK prevalence.

Symptoms pwMND experience are difficulties with the respiratory system including swallowing, breathing and impaired cough. An intact cough mechanism is an important function of the respiratory system which enables an individual to maintain the airway by way of clearing secretions and foreign materials to prevent aspiration of food and fluid. A weak cough is the main respiratory complication in pwMND and is the major cause of morbidity and mortality in this client group, with respiratory distress being the main reason leading to emergency hospital admissions.

The auditor developed an audit to evaluate if generic community physiotherapists in the Swindon area were implementing NICE guidelines on cough augmentation techniques; these should be considered and offered to pwMND if effective cough cannot be achieved unaided. A cough assist device should be obtained to aid the removal of secretions as equipment such as cough assist has been shown to significantly improve quality of life and prolong survival (Bott et al, 2009). However, in reality, as many as one third of people in need of a cough assist machine are unable to access one with some Health Authorities not routinely commissioning these items of equipment (Muscular Dystrophy UK, 2015).

In addition, the All Party Parliamentary Group (APPG) (APPG, 2011) inquiry demonstrated that many pwMND may experience a ‘postcode lottery’ when accessing domiciliary services and this appears to be the case for pwMND in the Swindon area, as there is currently no community specialist respiratory service or pathway to obtain a cough assist. Patents and carers who cannot access specialist community support experience difficulties in obtaining the quality care they need from a patchwork of services. For pwMND access to specialist care services are inconsistent and there is evidence to imply that although it is improving, it falls behind the care experienced by people with other terminal conditions such as cancer (APPG, 2011). A postcode lottery of care provision is inexcusable (The National Council for Palliative Care 2013).

Respiratory specialist physiotherapists are able to train patients and care givers on how best to manage respiratory needs and use of equipment such as cough assist machines (Muscular Dystrophy UK, 2015). Due to the unpredictable progressive disease trajectory, it is advisable pwMND regularly have their respiratory status assessed in the community by a respiratory physiotherapist at least every six weeks (MNDA, 2008). Muscular Dystrophy UK (2015) cited 52 percent of patients requiring respiratory provisions had no access to respiratory physiotherapy. Failure to provide specialist equipment and a domiciliary respiratory physiotherapy service is putting patients’ lives at risk, placing enormous strain on them and their families. This also leads to huge financial implications to the NHS with unnecessary costly admissions to Intensive Care Units (Muscular Dystrophy UK, 2015).

An audit tool was developed that reflected the 4 guidelines specifically relating to Cough Effectiveness (see audit tool) and then subsequently was carried out at the beginning of November 2016 using six months of clinical documentation from 1st May 2016 to 31st October 2016.

20 pwMND were identified as being eligible for the audit. 2 pwMND were not included in the audit due to requesting no active engagement in services. Therefore this was deemed not appropriate to be included in the data collection. Therefore a total number of 18 pwMND were audited out of the total population.

The audit data took half a day to collect the electronic notes information and then another two days to collate and evaluate all the information and report the findings. Both Great Western Hospital National Health Service Foundation Trust (GWHNHSFT) and Prospect Hospice were very supportive of the necessity for this audit to be completed and agreed to protected clinician time.

Reliable data was readily available for the audit from the two community physiotherapy providers for pwMND in the Swindon area, namely Prospect Hospice and the Community Intermediate Care Team (CICT), Great Western Hospital National Health Service Foundation Trust (GWHNHSFT). Collection of data was carried out retrospectively from data obtained from electronic note systems of Crosscare for Prospect Hospice and SystymOne for CICT.

This data was collected using the paper audit tool (audit tool) to collect face to face contacts of physiotherapists’ assessments and treatments. Information was then inputted into an Excel spreadsheet. To ensure that the same patient information was not recorded twice, the MND Multi-Disciplinary Team number identification code was used, however no patient identifiable information was collected to ensure compliance with the Data Protection Act (Great Britain, 1998).

If an entry on the electronic notes system was unclear with regards to treatments offered, the physiotherapist identified was contacted by telephone to discuss why all techniques were not offered. The physiotherapist was advised they were under no obligation to answer questions regarding their clinical reasoning and documentation. Explanations given were included in the audit data. Audit should be non-judgmental (Benjamin, 2008) therefore no physiotherapist identifiable information was recorded.

Manual Assisted Cough

33% of pwMND were assessed as not medically requiring the manual assisted cough technique due to clinical reasoning or cognitive impairment.

55% of pwMND were assessed as being medically appropriate to receiving the technique however only 33% had this carried out by a therapist.

The remaining 22% were assessed as being appropriate for the manual assisted cough technique but did not have this offered to them reportedly due to lack of therapist education or confidence in this technique.

ACBT-including huff

The most positive outcome was reported for the ACBT with 61% of pwMND being offered and taught this by a therapist.

The remaining 11% who were assessed as being appropriate were not offered this technique due to lack of therapist education and confidence.

Unassisted breath stacking

61% of pwMND were assessed as being appropriate for the unassisted breath stacking technique.

50% were offered the technique. The remaining 11% were not offered this technique due to lack of therapist education of confidence.

Assisted Breath Stacking

60% of pwMND were assessed and deemed medically appropriate for the assisted breath stacking technique.

Only 22% were taught this technique.

The remaining 38% not did not receive the technique, this was reported due to 16% lack of therapist education and confidence in the technique but also an additional 22% due to lack of resources such as Lung Volume Recruitment (LVR) devices to carry out the technique.

Mechanical cough assist device

54% of pwMND were assessed to medically require a cough assist device.

Only 5% out of 54% of pwMND were able to access a mechanical cough assist device and this was provided from palliative services however they are not the respiratory commissioned service to complete the assessment and monitoring of the patient and the machine. This was due to commissioning from Continuing Health Care (CHC) funding. However not all pwMND who are assessed requiring a cough assist will meet the criteria for CHC funding. At present in the Swindon area there is no other way of obtaining this respiratory equipment. This is causing inequality of access in the provision of services.

The remaining 49% of pwMND were not offered a cough assist device. 11% was attributed to lack of therapist education.

At 38% the most frequently cited reason for lack of technique was due to the lack of access to resources such as the cough assist machine.

Overall the audit highlights the inconsistency in service provision. This is shown to be unacceptable as all pwMND should have equality in accessing services and support.

I have, to date, been unable to implement the audit findings. The audit identifies the gap in service is the reason for the poor results. Therefore this will continue unless more funding or a service is set up.

The outcomes of the audit were not unexpected as currently there is no specialist community respiratory service to assess or review the respiratory function of pwMND. The therapists that did offer techniques were only able to do so within their own clinical team criteria or personal knowledge and experience. There is a need for a dedicated community based MND / complex neurology specialist Physiotherapist to provide assessment, monitoring of respiratory needs, provide physiotherapy chest clearance techniques and treatment, identification of equipment needs and provide training and care plans.

There is a need for a dedicated community MND / complex neurology specialist Physiotherapist to provide respiratory training and refresher training to Health Care Professionals. To update education resources and be a point of contact to support other Health Care Professionals managing their patients with MND.

There is a need to formulate a clear funded pathway which can be used to access ordering and funding of specialist respiratory equipment in a timely manner. Equipment should include Lung Volume Recruitment devices, specialist MND neck collars, and Cough Assist machines.

The service would benefit from a band 3 administrator post of 7.5 hours a week to support the MND / complex neurology specialist Physiotherapist with coordination of training, meetings, update documents, take minutes, send patient update forms to GPs and other Health Care Professionals.

Overall the audit highlights the inconsistency in service provision. This is shown to be unacceptable as all pwMND should have equality in accessing services and support. The audit highlights that pwMND are having difficulty accessing the community respiratory support and equipment they require.

Authorities may be reluctant to implement new costly services and equipment. The cost-effectiveness of commissioning new services needs to be considered (Weintraub & Cohen, 2009). Not investing in specialist services and equipment such as cough assist machines may actually increase NHS costs. For example, statistics from Public Health England (2014) reported 11 emergency hospital admissions in one year for pwMND in Swindon. A respiratory physiotherapist supporting a patient at home with a cough assist machine amounts to £4,412. This is compared to a week-long stay in an Intensive Care Unit which may cost more than £13,000 (Welsh Government, 2013). This is a potentially avoidable hospital admission cost of over £9,000 per patient a year for Swindon CCG (Clinical Commissioning Groups). For the 11 patients admitted in one year this saving could be over £100,000 (See Appendix A for calculations). This could also potentially decrease the number of hospital bed occupancy days.