Information for you

We know this is a challenging time for us as individuals, as an Association and indeed as a country. The situation is fast-moving, and information and advice is changing rapidly. Your volunteering with, for and on behalf of people with MND is incredibly important and we are continually grateful for it. In dealing with this unprecedented situation we are having to take some very difficult decisions.

It is important that we keep you safe, whilst exploring ways to provide help to people affected by MND. You will need to consider your own safety, especially if you are over 70 years old and / or have other health issues. We ask you to follow the government advice.

Asking volunteers to avoid non-essential face-to-face contact is one of those decisions, but a necessary one to minimise the risk of spreading coronavirus. All activities involving meeting face-to-face should now be postponed, that includes visits to people with MND, meetings with staff and fellow volunteers.

With the situation changing so quickly, it isn’t practical to set new dates now but do reassure anyone involved that you will be back in touch with them – we don’t want to be lose their vital support. We very much hope you will rearrange fundraising, awareness raising, AGMs, group and branch meetings once the current situation eases.

But that does not necessarily mean our local volunteering stops. People affected by MND need us now more than ever!

We really need you to work with us to find alternative ways to support people affected by MND. If you can continue to offer your invaluable support to people affected by MND by phone, email or online please do. People will be feeling increasingly isolated and would value the contact.

Our teams are working on ways to support people affected by MND through remote communication to reduce the effect of isolation caused by coronavirus and your support is vital in helping us to do that. I am sure you will already be considering ways to help people in this very challenging situation – the priority is to do this without increasing the risk to either yourselves or people living with MND. We are considering how the Association can help with concerns such as shopping, collecting prescriptions, etc.  These will likely be much needed locally, however, we are considering advice on how to do that in the safest way for all concerned.

Although we don’t know how long the coronavirus situation will continue, I am sure that we will wish to help as best we can.

Our staff teams are still contactable. It is important that you keep in touch with us, and we are here for help and advice. We encourage you to call with any questions. As together, we are best placed to find creative ways to help each other, stay safe, and adapt our help for people affected by MND.

Our dedicated MND Connect helpline is able to offer support and signpost.

Thank you for your support in this very testing time for us all. Keep in touch and stay safe.

Like many organisations we have had to quickly adapt and find new ways of working whilst continuing to ensure that those with and affected by MND, as much as possible have access to the essential support and services they need.

We have developed a plan that will enable us to respond to the situation created by the Coronavirus outbreak, making use of the collective expertise of our volunteers and staff working in partnership.

The purpose of the plan is to ensure that the MND Association can make the best use of its resources in responding to the needs of people with and affected by MND during the outbreak.

To deliver the plan we will be focusing on four key areas:

• Understanding and addressing the health and social care landscape

  The Coronavirus outbreak has placed significant strain on health and social care services.  We will establish how the situation has impacted on services for people living with MND and will use our networks to offer the best possible advice to those we support.

• Understanding and addressing, where possible, the needs of people with and affected by MND

We want people with and affected by MND to know we’re here to listen so we will be making contact with all those living with MND who are known to us and where possible we will offer advice, guidance and reassurance.

• Supporting people with and affected by MND

Whilst many of our conventional ways of offering support will be on hold due to restrictions on face to face interactions we will continue to offer practical and emotional support to people living with MND, where possible adapting and adjusting our methods and making use of technology to help.  We’ll aim to support through video and telephone calls, virtual groups, signposting to external support groups as well as looking at ways we can safely provide practical support with the collection of essential supplies such as food and medicine.  We will also consider how we can use our grants to provide financial assistance during these exceptional circumstances.

• Support for children, young people, families and adults affected by MND

The Coronavirus outbreak has affected the lives of everyone and as well as those living with MND we want to continue to offer support to their families.  We will provide support to children and young people and will signpost to useful online resources on topics such as mental health and wellbeing.

The plan recognises that people with MND are just one patient group amongst many that are likely to be affected in similar ways by the symptoms of Covid-19 and that there will be unprecedented demand on NHS and other statutory services.

A friendly call either on the phone or using video calling technology can feel very supportive and reassuring. It can also help you, as a volunteer, and people with and affected by MND feel less isolated.

There are many different online systems to try to see which works best for you. These are the ones we think work well.

Zoom - Online Group Video Meetings

• Available online and as an app on Android and Apple Phones/iPad
• Free Basic Version available. Enhanced versions are available with prices from £11.99 per month. This could be paid for out of Branch/Group funds if required
• Video calls accept up to 100 people at once so you could meet ‘virtually’ with Branch/Group members.
• 1 member can create an account, set up a meeting and send a link by email inviting your Branch/Group members to join – Getting started Guides
• Please be aware– the Basic version limits meeting to 40 minutes – but another meeting can be set up to begin as the time limit ends if needed.

As with any video calling platform it is important to take steps to use Zoom safely and securely.

Below are some tips for maintaining the security of your next Zoom meeting.

When Setting Up Your Meeting...

• Password protect your meetings;
• Only allow signed-in users to participate;
• Don’t allow others to join before you, the host;
• Use the waiting rooms feature;
• Use a randomly generated meeting ID;
• Check for software updates.

During Your Meeting...

• Lock the meeting when everyone is present;
• Turn off participant screen sharing;
• Avoid file sharing;

WhatsApp Group Chats

• Available for Android and Apple phones through the app store
• Free
• Allows those who have speech difficulties to engage.
• WhatsApp allows up to 256 people to join a group chat so everyone can message each other at the same time
• A member can set up a group and invite other people to join using their mobile number – How to create and invite to a group
• Please be aware- phone numbers of those that are in the group can be seen by everyone in the group - do make people aware of this when you invite them.

TOP TIPS – whichever methods you use

• Let people know if you are sending them a link so they know it is safe to click as they may not recognise it
• If you are hosting using a new method, try it out with a few people first to check you understand how it works
• Try to take notes and circulate these as usualshould anyone not be able to access these online gatherings
• Remember that not everyone will have a computer, tablet or smart phone. It is so important to stay connected, so do consider helping those without devices through your Quality of Life grants.
• As you keep in touch with people affected by MND you may learn about needs they have that require help from the Association locally or nationally. Please do keep the local team updated on such information, and if you are an AV please update the portal.

As part of our plan to support people living with and affected by MND during this time we have collated information on services available locally to help people with and affected by MND.

Over the coming weeks we hope to build up a page of different services and would love your input. If you are aware of anything in your local area please complete this online form.

Over the coming weeks, staff members and volunteers hope to make contact with all people with MND who are know to us to offer a friendly call and let them know we are here for them. 

The purpose of our calls is to offer reassurance and an ear to listen, to understand
any concerns or problems they may be facing during these challenging times and
where possible provide useful support or guidance.

The documents below are to support those volunteers

• Checklist for contact
• Additional notes for volunteers
• Updating consent

Many people living with MND and their families will be shielding at this time and may benefit from support in collecting essential supplies such as shopping and medicine.

We have produced the guidance below to help you carry out this task in a safe and secure manner. 

Please read this information before agreeing to offer support with shopping or collecting essential supplies.

Protecting Yourself and the People you are Supporting

Ensuring your own safety and welfare as well as those you are supporting is always vital and there are some important steps, we can all take to ensure we remain as safe as possible.

• It is important that you only volunteer to help in this way in you feel well enough yourself and if you are not shielding, self-isolating or in a high-risk group (those over 70, with a pre-existing medical condition or who are pregnant)
• The best way to protect yourself and those you are supporting if you are leaving the house for supplies is to ensure that you regularly wash your hands for at least 20 seconds with soap and water. If this is not available, then use an alcohol-based wipes or sanitiser. As well as regularly washing your hands you should avoid touching your face.
• When out in the community maintaining social distancing measures are important, maintaining a distance of at least 2 metres from others wherever possible.
• If you cough use a tissue and dispose of it immediately, if you don’t have a tissue use the inside of your arm.
• If you have or develop symptoms of COVID-19 which is a new continuous cough and/or a high temperature or shortness of breath you must follow the government advice and self-isolate as there is a risk you can spread the virus to others.
• It is important to let your own family and friends know what you are doing if you are leaving the house to provide support to others.

Making Contact

The first step in offering support with shopping and essential supplies is to contact the person you are supporting.  You can do this through a variety of methods including telephone, or a video call or via email if you the person you are helping is well known to you.

• You should establish what kind of support is required – the collection of a pre-paid order (such as a click and collect service), shopping or the collection of medication. It is important to remember that the support you provide should be restricted to essential supplies.
• If you are helping with shopping, you should agree with the person you are supporting specifically what items need to be purchased and make a list of these items. At this stage it is good to check whether they have any dietary requirements and whether they are prepared to accept substitute items if the ones they have requested are not available.
• Before shopping it is important to discuss the options for payment and agree which method will be used.
• You should agree how the shopping will be delivered reminding the person you are supporting that you will be unable to enter their house and will need to drop the shopping outside their door.

Payment Options

The options below are what we would recommend in order of preference, however we are aware that these services are unlikely to be available in all instances.

Click and Collect

Most large supermarkets (Asda, Sainsburys, Tesco and Morrisons) offer a click and collect service where goods can be ordered and paid for online before being collected.  This service is ideal as all that is required is for the person you are supporting to share the reference number with you.  Whilst this option is the most convenient, we are aware that there is a significant demand for these services currently.

Call and Collect

Some smaller local shops may offer a service where a person who is self-isolating can call, order and pay for shopping.  In this instance you should be able to simply arrive and collect shopping and not need to worry about payment.

Pre-paid supermarket vouchers, gift cards or electric vouchers

Many large supermarkets offer the ability to purchase gift cards or vouchers online either as a plastic voucher card or digital e-vouchers which will allow you to agree a specific spending amount in advance and avoid exchanging cash. These cards can often be purchased on general gift card websites or from stores directly.  In this instance you will need to collect the plastic card or print the electronic voucher before you shop.  It is important that vouchers are returned after they have been used and we would advise that pre-paid cards are put into a box or bag to reduce contact.

Cash Payments

Cash payments should be used as a last resort if none of the above options are possible and should only be used where a volunteer is known to the person they are supporting.  Volunteers should not use their own cash to purchase goods, instead cash should be collected from the person they are supporting before visiting the shops.  The collection of cash should be done in a way that reduces contact so cash should be left in a pre-arranged, secure location, in a box or bag to reduce contact and handed over in a way that avoids face to face contact.  We would recommend that the maximum value of cash exchanged in a single shopping trip is £45.00.

Debit and Credit Cards

Under no circumstances should you be given or accept an individual’s debit or credit card to make payments on their behalf.

Returning Shopping

When returning with the shopping you should leave the goods on the doorstep, provide a receipt for everything purchased and leave any change if making a cash payment in a secure place. The return of goods should be completed in a way that avoids face to face contact.

Collecting and Delivering Medication

If you are helping to collect medication you should agree with the person that you are supporting that they will contact the pharmacy, place their order and make a payment for the prescription.  If the pharmacy will not take payment over the phone or there is not a prepayment arrangement in place you should follow the same advice as for shopping above when dealing with cash. 

The person you are supporting should also agree what time the medication will be available for collection from the pharmacy and inform you of this.

You should ensure medication is delivered using the same methods as for shopping to ensure the safety of everyone involved.  This includes washing your hands regularly, delivering the medication in a way that avoids face to face contact.

We have created a set of tools for branches to and groups to quickly create their own emergency appeal as a way to raise funds during the Covid-19 crisis

Emergency Appeal Toolkit

The toolkit includes:
• A guide to setting up an Emergency Appeal JustGiving page
• Suggested images and text for JustGiving and social media (Group header, branch header, JustGiving story Template)
• A Press Release template
• A Guide to Fundraising with Local Trusts and Foundations

If you have any questions or need any support with this then please contact your Regional Fundraiser.

Life can be challenging at the best of times and particularly challenging in these strange and difficult times.

If you are struggling with the lock-down or virus related problems, do remember we stand together as a community, and the Association would wish to try and help you personally too. So do not hesitate to ask us for support.

Below are some ideas that can help with looking after your own mental health and wellbeing.

Mindfulness, Yoga and Meditation

Spend ten minutes or so a day being mindful, focussing on the here and now or simply being aware. Two of the top Apps have now made part of their content available free of charge.

Headspace

Calm

There are a number of on-line yoga and meditation classes popping up. Some are free, others are not.

Keeping in Touch

Keep in touch with fellow volunteers, friends and like-minded people in whatever (from a distance) way works best for you. It doesn’t seem that long ago that it seemed a bit strange to be linking up with people via WhatsApp, Facetime or Zoom. Now it is fast becoming the norm.

Exercise

With only one outdoor exercise slot available to us each day, it is worth making the most of it. Walk, cycle, jog or just get out in the fresh air for a bit but do remember to keep at least two metres from people who aren’t in the same household as you.

Reaching Out

Don’t be afraid to reach out to others who you think might appreciate a call but you don’t know very well. Nine times out of ten they will be delighted to hear from you.

Stay Positive

Although it can be easier said than done it is worth trying to maintain a positive frame of mind. It can help to:

• Remember that there is more to life than Covid 19
• Limit your intake of news
• Avoid focusing on what is wrong with the world
• Remember that in time, this too shall pass

Variety v Sense of Routine

There is a fine balance between introducing some variety into our lives and enjoying a sense of routine. Try to find that balance.

Healthy Eating

A healthy diet helps protect the immune system and our sense of well-being but can be quite boring. Do take the time to experiment with new foods (chocolate is of course part of a healthy diet).

Services to Offer Support

The Happiful team can deliver their monthly newsletter direct to your inbox (it contains some great tips)

The Samaritans are available to listen 24 hours a day, 7 days a week. Call 116 123

The Mental Health Foundation has produced some great Covid 19 specific guidance

The NHS Every Mind Matters initiative also had some great guidance and advice.