Supporting people affected by MND

Developing supportive relationships with people living with MND and those close to them takes time. These tips may help you:

• show empathy, appreciate and acknowledge people's personal experience of MND. Everyone's journey is different. On your first contact, a person living with MND and/or those close to them may want to tell you how ‘it all started’ and what the experience of the diagnosis has been
• build trust with the people you support by taking the time to get to know them
• build a picture of what the family unit is like and get a better understanding of the support the person living with MND is getting; it will help you recognise what their needs are or could be
• talk about topics unrelated to their condition; it will help you build a rapport with the person you are supporting
• be a listening ear. The people you support may want to speak with you about their hope, frustration, struggles and fears
• ensure that people living with MND, including those with communication difficulties, are included in decisions about their life and about their care and support
• manage expectations and keep people you support informed; for instance, if you are unable to visit when you said you would
• ask the people you support what they are into (gardening, sports, arts etc…). By doing this, you can tailor your approach to their interests
• respect people's way of life as well as the choices they make, even if they differ from you own. Every family is different.

It is important that all MND Association volunteers and staff members maintain clear boundaries with the people they support. This means ensuring that what they say and do is within the limits of their role. During induction, area support co-ordinators will provide information to support volunteers regarding boundaries related to their volunteering.

Practical help

People with MND may need practical help and support with day to day tasks. It is important that they can access the support they need, that it is provided in a sustainable way and, where appropriate, by professionals.

It is not part of the support volunteer role to provide practical help to people with MND; however, volunteers may find that they have conversations with people they are supporting about areas where they would benefit from practical help. If a support volunteer is worried that a person they are supporting does not have access to the practical support they need, they should raise this with their area support co-ordinator as soon as possible. Support volunteer roles do not include:

• providing 'hands on' personal care for a person with MND - e.g. taking them to the toilet, helping to lift/carry them, or helping them to eat
• providing medical care for a person with MND
• providing respite by sitting with a person with MND while their carer goes out
• driving a person with MND, for example to appointments
• carrying out household tasks for a person with MND.

Professional advice

Support volunteers can provide information to supplement the advice given by professionals.

If a health and social care professional is in a support volunteer role, it is important that they do not provide advice in the way they would if they were acting in a professional capacity.

Support volunteers will share concerns about the care of a person living with or affected by MND, with the area support coordinator or the MND Connect helpline. Support volunteers can share concerns directly with a health and social care professional if they have:

• a pre-existing relationship with a health or social care professional
• agreement from the area support coordinator to share concerns directly with a health or social care professional
• sought the consent of the person with or affected by MND, before sharing concerns with a health or social care professional

In some cases, support volunteers, in partnership with their area support coordinator, will help with the development or improvement of local services. However, it is important to remember that staff, on behalf of the Association, will advise on how we should work with local health and social care professionals.

Financial matters

You may be asked questions relating to money and finances as part of your role. Any advice on financial matters should be limited to our existing services, such as the benefits advice service or our support grants programme.

Support volunteer roles do not include:

• providing financial advice to a person with MND (or their carers)
• spending money on behalf of a person with MND (or their carers)
• looking after money for a person with MND (or their carers).

Please read our acceptance of gifts guidelines.

Making decisions

Volunteers may form close relationships with the people they support. While they can listen and help people affected by MND make informed choices, they shouldn't decide or speak on their behalf.

If there is an issue around decision making or accessing services, volunteers will contact their area support co-ordinator or MND Connect.

Contact

Support Volunteers do not provide a 24/7 service, therefore it is important they set clear boundaries with those they support regarding ongoing contact and communication e.g. let people they are supporting know when they can be contacted and who they should get in touch with, if they have a problem or emergency.

Remember, the MND Association or an individual support volunteer cannot provide an emergency or out of hours service. The person with or affected by MND should contact the emergency or out of hours services as required. We strongly encourage you to have a dedicated phone and email address that includes a standard message with MND connect details as a backup.

e.g. You have reached ………, volunteer for the ……Branch/Group. I’m sorry I can’t take your call at the moment, but if you would like to leave a short message and your telephone number, I will get back to you. Please be aware that I volunteer / work on a Monday and Friday, so it may take several working days to get back to you. If you require more immediate advice or information, please contact MND Connect on 0808 802 6262. Thank you for calling.

Saying No

Saying 'no' to someone you have become close to can be difficult; if you are clear about your role and your boundaries, you will be more confident in maintaining those boundaries as the relationship develops.

If you have to say 'no', it may be good to:

• explain why you have to say no (and refer to the MND Association guidance and policies)
• give them the opportunity to tell you how they feel
• acknowledge and understand that they may be upset at your refusal
• offer a solution e.g. signpost to a local organisation which can help
• remain consistent with your decision and message.

A friendly call, either on the phone or using video calling technology, can feel very supportive and reassuring.  There are many different online systems that volunteers and staff can use. These are the ones we think work well introduction to video platforms. Are you new to video calling technology?Watch our guide to making a call with Zoom

Texting or using messaging apps such as WhatsApp is a great way to engage with people having difficulty with speech and share online information.

Support volunteers may wish to use a separate phone and mobile number, so that they do not have to give out their personal contact number. Support volunteers can speak to their area support co-ordinator if they wish to purchase a low cost pay as you go mobile phone or get a SIM only deal. They will be able to claim back the cost from their local branch/group.

Support volunteers may also wish to set up a secondary email account, so that they can keep communication related to their volunteering role and personal matters separate. For example, they could set up [email protected] Personal or sensitive information may be emailed to support volunteers, therefore,  it is important to use an email account which isn't shared with anyone else.

When sending emails, it is imperative that you check you are sending the email to the correct recipient; it can be easy to accidentally auto-fill with a similar name. Always check the content of any email you decide to forward, as it may contain personal data or sensitive information.

When sending an email to more than one person, you must protect data and not share email addresses with others. To protect the email address of all recipients, use the bcc function (blind carbon copy).

Attending support meetings is a great way for people affected by MND to come together and receive support and information. Support meetings may be held virtually, for example on Zoom.

Read our guidance on hosting meetings

Watch our guide to getting started with Zoom

Lone workers are those who work by themselves without close or direct supervision. Support volunteers and area support co-ordinators could find themselves lone working at some point.

Read the guidance on lone working

MND Association branches and groups play a vital role in supporting people living with and affected by MND and there are many spread across England, Wales, and Northern Ireland. Led by volunteers, they offer a range of support activities to families, including coffee mornings, and carers get-togethers. They also fundraise, campaign, and raise awareness of MND in their local area.

Support volunteers may decide to join their local branch or group; they can also choose to be on the committee. If this isn’t the case, it is good practice for support volunteers to liaise with their local branch or group on a regular basis, once a month is ideal. The benefits of this include:

• an opportunity to connect with and get support from peers
• support volunteers are aware of activity within their local branch / group
• branch / group volunteers are aware of support being provided by local support volunteers and of the needs of people affected by MND
• branch/ group and support volunteers can work together to promote support activities e.g. using social media
• support volunteers can apply for certain Association grants via their local branch / group for those that they support
• support volunteers can give anonymous feedback to the branch / group volunteers on grants provided and the difference this has made to the people living with MND and / or people affected by MND.

As part of your role, you may interact with people who share with you financial, personal and emotional information. It is essential that they can trust the MND Association and feel confident that information they disclose to us is treated with respect and in confidence. Before starting in their role, support volunteers must complete our data protection e-learning module. They will also read The Protecting and Respecting Personal Data guidance, which explains what GDPR is and what it means for volunteers.

The Confidentiality Policy explains how the MND Association treats personal and sensitive data.

The volunteer portal allows volunteers to access information about their members, communicate with other volunteers via a forum and manage their personal details and preferences online. Through the portal, selected branch and group representatives will be able to view information about their members, upload meeting documents and view financial support given to people in their area.

All support volunteers should use the portal to submit and view notes from their support activities. This is important, as it ensures our area support co-ordinators are aware of the support being provided by support volunteers.

The portal is available at: https://mnda.microsoftcrmportals.com. If you are a volunteer who would like to access the portal, but have not yet been invited, please email [email protected].