• What aspects of care appeared most meaningful to the people featured?

The strong theme was communication, and the MDT working closely together. This is clearly something that most patients outline is key.

In the first video we watch the lady explain that she attends the MDT clinic in which she has the opportunity to ask questions and receive all the relevant information. She further explains how all the members of the team talking to each other is so important because care could not be improved otherwise and that as long as people talk to each other her care will be effective. She also explained another key point regarding communication, in that when communicating – it is vital to remember that everyone is different. Therefore individual care plans are essential.

In the second video we also hear from a patient who explains how Important it has been for his MDT to all talk to one another. He describes this as ‘all singing from the same hymn sheet’ and ‘no cross wires’. He explains how he feels his care has been managed very effectively because of the good communications skills within his team.

• What helped them feel supported, listened to or involved?

In the first video, we hear how the patient has felt supported from both the hospital and community services, but also how they both operate very differently. She explained that the community services are very casual, and the hospital setting is very professional. I feel it is important to have both aspects – as long as each team communicate with each other. Its good that the hospital team will plan to se her at a set time frame between 3 – 4 months – as patients can deteriorate quickly. However is she wishes to contact someone in the meantime – she has the community services, but also the MNDA website and helpline.

In the second video, we hear how the patient has felt supported from both the hospital and community services too – but mainly the community as this is better for his needs. He aso has the regular clinic follow ups every 3 months, however he can contact the hospice and be seen the very next day. He also appears to have lots of support from his district nurses, and GP. It was lovely to hear that he got all the equipment he needed, always felt involved, and was ‘never left out’ of any decision making

• How could the patient experience be improved further?

In the first video the lady highlighted that she hasn’t had any help from her GP, and that grants are difficult.

In the second video, the patient expressed that he had spoken with other people living with MND and they didn’t have as much help from their gp as he has been given. He also highlighted that home visits would be a great improvement to services, because then he wouldn’t have to go out in the bad weather, risking further health implications.