Multi-disciplinary support for people living with MND

Project overview

People living with Motor Neurone Disease (MND) are likely to need support in every part of their life as their condition progresses. This can mean they have to juggle appointments with a range of different professionals. 

In Coventry and Warwickshire, the NHS Trusts, hospices and community organisations work together to offer a more co-ordinated and cohesive service for MND patients. They developed a multi-disciplinary service that provided neurological, respiratory and nutritional support. 

This led to a regular multi-disciplinary team (MDT) meeting for all the hospice, hospital and community health care professionals involved in caring for patients with MND. The MDT includes nurses, physiotherapists, occupational therapists, doctors, dietitians, speech and language therapists, and representatives from the MND Association. 

The Shakespeare Hospice began operating a clinic for people living with MND. Although this was successful, the MDT realised that patients who were not in the hospice’s catchment area were ‘falling through the gaps’. 

To overcome this problem, Myton and Shakespeare hospices joined forces with their MDT partners to deliver a multi-disciplinary MND clinic at the Shakespeare hospice’s day centre. 

Outcomes

The MND clinic has been very successful. People living with MND are able to get holistic support from a range of professionals. They can also chat to volunteers from the MND Association and The Shakespeare Hospice. Carers and family members are welcome, and patients can attend the clinic at any stage in their disease. 

The University Hospitals Birmingham (UHB) NHS Foundation Trust provides nursing leadership for the clinic, and hospices provide therapeutic support. 

The clinic is quite informal – some people just come for a cup of tea and a chat. This gives staff the opportunity to holistically assess each patient. Because the clinic is supported by the multi-disciplinary team and takes place at the hospice, there are always people with the right skills on hand to respond to any issues. 

The clinic gives staff the opportunity to build a relationship with patients who they might not otherwise meet until their MND has worsened. By doing so, they are more able to recognise any changes in someone’s condition, provide tailored support and begin discussions about advance care planning. 

Key facilitators

In Coventry and Warwickshire, there has been a long-standing interest in working collaboratively to support patients with MND. Every member of the multi-disciplinary team (MDT) has different skills and expertise, which complement each other. The team has a strong ethos of listening to and learning from each other. 

Holding MDT meetings online has improved attendance and means more professionals can share their opinions. The MDT has grown so much that there would not be a room big enough to hold everybody in person! 

Challenges

Despite a person’s lifetime risk of developing MND being 1 in 300, MND is considered a rare disease. This means some professionals, for example GPs, may only come across a patient with MND once or twice in their career. It is understandable that professionals will not all have specialist knowledge about how to care for someone with MND, but this can have an impact on the patient’s welfare. Having a dedicated MDT helps ensure that any professional who is supporting someone with MND is able to access specialist advice. 

The MDT is made up of people from a range of different organisations, many of whom use different systems for records and communication. This can make information sharing difficult. Having a regular MDT meeting ensures that information is shared with everyone who needs it. 

Some people living with MND are reluctant to visit a hospice because they have negative perceptions about palliative and end of life care. Holding the drop-in clinic at the Shakespeare Hospice gives patients a gentle introduction to the hospice and enables them to build relationships with the team at their own pace.