Shared learning database

Royal Free London NHS Foundation Trust
Published date:
February 2018

NICE published updated guidance for Motor Neurone Disease (MND): assessment and management in 2016 (NG42). The guidance recommends that people with MND should undergo a respiratory assessment every 3 months.

Whilst patients in our care were being provided with these assessments, we recognised people with MND have individual disease trajectories and some people will experience periods of rapid decline. We therefore developed a brief and basic respiratory assessment tool which could be carried out by community neurological therapists with minimal equipment.

The assessment tool was based upon the NICE guidance. This tool allows us to prioritise the caseload and see patients urgently where indicated.

Guidance the shared learning relates to:
Does the example relate to a general implementation of all NICE guidance?
Does the example relate to a specific implementation of a specific piece of NICE guidance?


Aims and objectives

We aimed to assess the implementation of an easy to use respiratory assessment tool which could be used by community neurological therapists with minimal equipment.

This tool aimed to facilitate early identification of respiratory function difficulties to promote early and appropriate escalation to respiratory services. Effectively managing respiratory symptoms in MND results in survival and quality of life.

Reasons for implementing your project

The Royal Free London NHS Foundation Trust serves a population of 1.6 million people. Our sleep and ventilation service cares for people with MND and has a catchment area of North Central London, Hertfordshire, Essex, Bedfordshire and Luton. We have provided three-monthly respiratory assessments as per the NICE MND guidelines since the launch of those guidelines.

However, we identified patients with MND have individual disease trajectories and we were finding it was not uncommon for patients to have rapid deterioration in between their hospital visits. The service was also growing and we needed to find safe ways of prioritising the clinical need of the patients. We identified collaborative working across secondary and primary care could help to solve these issues.

How did you implement the project

A collaborative review of respiratory section of the NICE MND 2016 guidelines was undertaken between the consultant respiratory physiotherapist and the community neurological therapy team. We identified which subjective and objective assessments would be the most accurate and user friendly for determining respiratory function in a community setting. We developed a respiratory assessment and action tool which alongside subjective measures included the objective measures of peak cough flow (PCF) and SpO2.

These objective measures involved minimal equipment. SpO2 probes are reusable and were purchased from within the community therapies team budget, they are available on the NHS supply chain for £230 each. Peak flow meters are available from the NHS supply chain at a cost of £0.71 each and are single patient use but are reusable. The community neurological therapists attended a training session with the consultant respiratory physiotherapist to ensure adequate knowledge and ability to use the tool.

Key findings

Between March 2016 and March 2017 the community neurological team supported 22 individuals with MND, 16 of these patients underwent respiratory assessment. We identified nine patients with respiratory symptoms, resulting in four new referrals to the sleep and ventilation service at the Royal Free whilst five patient’s respiratory appointments were expedited. Six patients did not have an assessment carried out by the community team.

The assessments were carried out by physiotherapists (88%) and speech and language therapists (13%). The new assessment and referral pathway has been successful at identifying patients with a changing respiratory status. This has resulted in earlier referrals to the sleep and ventilation service or enabled appointments to be expedited.

The results highlight the majority of respiratory assessment was carried out by physiotherapists and not all of our patients had their PCF assessed by the team. Timely respiratory assessment and subsequent appropriate management plans is known to improve quality of life of patient with MND. Where patients chose non-invasive ventilation as part of their treatment plan they are likely to see an increase in survival.

This was a pilot study to assess the feasibility of non-respiratory specialists carrying out respiratory assessments as part of a collaborative and integrated working approach. Further work is required on potential cost benefits.

Key learning points

Developing an objective and user-friendly respiratory assessment assists multi-disciplinary teams in the early identification of respiratory symptoms. It improves access to specialist respiratory services and is an innovative way to co-ordinate work between services.

Physiotherapists required minimal training, other therapists were able to conduct the assessments but required more support and training. We are now looking at further developing the tool to facilitate patients to self-monitor their respiratory function. We are further expanding the tool to other boroughs. A willingness to work collaboratively and provide education sessions was key to the successful development of this respiratory assessment tool.

Contact details

Stephanie Mansell
Consultant Physiotherapist
Royal Free London NHS Foundation Trust

Secondary care
Is the example industry-sponsored in any way?