Association visitors: The value of volunteers to people living with MND

There’s a lot to be said for a cup of tea. It’s late morning in a clinic for people who have been diagnosed with motor neurone disease (MND). A volunteer is making tea and coffee for those attending the clinic and their families. Some have travelled quite a distance and the refreshments are welcome. It might be one of their first visits or they may have been attending for years.

The role of association visitors

These volunteers, known as association visitors, are assigned to people with MND. It is a wide ranging role which, depending on the needs and wishes of people living with MND, can include emotional support and helping to navigate health services.

The rarity of the disease means there is often a gap in knowledge about the disease and the services available. This is often where association visitors fit in the jigsaw puzzle – acting as a guide.

The association visitor network is a key service of the MND Association, who fund the service and train and support the volunteers. There is no funding received from government or clinical commissioning groups.

Capturing the work of the association visitors

We conducted an evaluation looking at association visitors for the MND Association earlier this year. This included speaking to people living with MND, their families and carers, MND Association staff and healthcare professionals.

Through surveys and interviews we were able to capture the outcomes from various aspects of association visitors’ work. Their work was highly praised by all groups interviewed. The evaluation summary and the evaluation full report present detailed survey data and case-studies of the experiences of people with MND, their families, healthcare professionals and association visitors themselves.

The research showed that association visitors had raised awareness of local services and, vitally, helped people gain access to them. Furthermore, the role has an important befriending element. People living with MND feel well supported by the visitors and can talk to them about issues they are not always keen to discuss with their families.

Capturing the challenges

Yet there were also challenges related to association visitors. The variation in local healthcare services, with some not as integrated as others, meant that in certain places the role was more demanding than in other areas.

In addition, the MND Association do not currently have enough of these volunteers across the country to meet demand. The visitors tended to be older, retired, female and white British. Obstacles to recruiting a broader base of volunteers included the time needed to complete the comprehensive training.

Furthermore, it was a taxing role for the association visitors themselves, which can have a significant impact on their time, as well as being emotionally draining. The evaluation recommended that whilst the number of association visitors should be expanded, it was essential to maintain the necessary support levels for these volunteers.

A key supplement to healthcare services

Whilst this volunteer role is over 30 years old, the broader context has changed too, as well as the role developing and becoming more focused. With the role of volunteers in health services a subject of some debate – there is also NCVO research exploring volunteers in care homes and hospices – it is important to note that association visitors are now working in changing contexts.

Although the volunteers were not operating in roles previously held by paid staff, many of the healthcare staff reported that there were greater demands on staff time. This had changed what they could do and, in certain cases, the professionals were not able to conduct the home visits/outreach work that they once did.

Therefore there was an aspect of the volunteers taking on a greater significance. The amount of time they could spend with people, also being available by phone or email, including outside of clinic hours for (non-urgent) queries was highly valued. This was an element of association visitors’ work that was particularly praised.

And finally…

As a researcher, it has certainly been the most humbling project of my career. All research depends on the goodwill of participants, giving up their time. For this evaluation in particular, I expected that many people would not be able to, or wish to, participate in the study.

The practical implications of this terrible disease, not to mention the emotional impact, is all consuming. I was taken aback by people’s generosity and am very grateful for it. I hope the evaluation provides key learning for this important volunteer role.