Your Visitors

Association Visitors (AVs) perform a vital role in supporting people affected by MND – both those with the disease and those close to them. They are your advocate.

Let us be your guide

Association Visitors and how they can help

All our Visitors are volunteers who have been carefully selected and have undergone a thorough training programme. Our Visitors are based in the local community as members of a team and usually have contact with people over the phone, via video or email or will visit them in their own home.*

*(Social Distancing permitting)

This is probably the single most important thing those living with MND and their carers believe the Branch does for them – provide an ‘informed friend’ through the Association Visitor (AV) scheme.

The branch currently has a team of six professionally trained and supervised Association Visitors, the majority of which have worked in the health and social service sectors. After diagnosis most neurologists give information about the local support available from the MND Association. With permission, an informal referral is made to the AV co-ordinator. A Visitor will then make contact and arrange either a visit, a meeting whether in person or via a video call or simply a follow up email or phone call. The method and timing of this is very much arranged to suit the wishes of the person(s) involved.

Simply talking with your Visitor and knowing that there is someone at the end of the phone often helps relieve the feeling of desperate isolation which can overwhelm people when they have just found out that they have MND. The AV is there to know your personal circumstances and situation, which can be difficult for Health & Social Care Professionals to have the time to do.

They are someone you can turn to in a difficult situation or to help you have / consider some of the hard decisions that need to be made through your journey with MND. Your AV can help you navigate the information out there to find what is right and relevant for you; they are someone for you to offload your worries or frustrations to, tell you what you qualify for and what grants and benefits are available, help you with filling in any necessary forms and then fast-tracking them, or simply offer assistance in how to manage life following a diagnosis.

It’s so comforting to know the Association visitor is always at the end of a line to give support, advice, encouragement and friendship at this time when we need it the most.

Many years ago our very first AV said she wanted to help people keep one step ahead. Care and equipment needs sometimes change very rapidly. Your AV can help anticipate this in such a way that whatever is needed is provided in a timely way.

Your AV will let you know how the MND Association can be helpful; when and where meetings are held, how to make financial aid requests or how to access specialised equipment and much more. They can also help by acting as an advocate and will make requests for specific funding to the Branch Committee which meets each month.

We want you always to feel free to be able to ask your Visitor for assistance with items not generally available through the statutory services, including care lines, transport, counselling, massages, driving assessments, etc. There are many things you simply won’t think of until they are upon you – and then it is always helpful to know there is someone who can understand how to navigate and act timely on your behalf.

I can quite confidently say my MND Association Visitor has given me confidence and the support to live as normal life as possible with MND.

The Branch is able to provide equipment which is either not available or not available quickly enough from statutory services. A riser-recliner chair or a motorised scooter, for instance, can usually be made available very quickly – but is always done in conjunction with the Occupational Therapist. Similarly the provision of a communication aid which may be accessed from an MND Association supply held nationally will be made at the request of the Speech & Language Therapist.

The carers and families are very much at the forefront of the AVs mind because they too experience MND – as well as having the physical and emotional strains involved in caring for a loved one. Simply being able to get away and have a break may seem daunting, but there are a range of resources out there the can make this happen and take away unnecessary burdens. Our AVs are there to guide you and will let you know about Quality of Life grants for you and your loved ones.

This service is provided totally free, and to whatever frequency you feel you want. All AVs are well trained and experienced to ensure you have the best possible service from the Branch.

What you can expect from your Visitor

  • Free and confidential emotional support for as long as it is required
  • Practical advice and accurate information that is tailored to meet your individual needs and at a time when you request it
  • Knowledge of the affects of the disease and how the Association can help
  • Information about other sources of help
  • Liaison on your behalf with the Area Support Co-ordinator (ASC) and your local Branch Committee
  • Awareness of and help to meet the changing needs of you and your family
  • Help for you and your carer(s) to identify problems as they arise and discuss with you your choices for how they might be managed
  • Follow up and support requests made by the ASC for help from the statutory/voluntary agencies or MND Association
  • Acceptance and respect of your choices and wishes

Some ways we assist

  • Help filling in forms and paperwork

  • Assist with AA, PIP and Blue Badge

  • Identify potential problems

  • Signpost other support services

  • Help fast-track applications

  • Discuss financial support grants

  • Fund massages or other treatments

  • Organise equipment loans

  • Home automation or adaptations

  • Travel or insurance considerations

  • Motability and driving assessments

  • Provide a listening ear

  • Support for your family

Get in touch

If you have any queries about this service or would like to find out more, please contact contact our Branch AV Co-ordinator Sue Reeves on 07973 182782 or susan@mndawss.org

Sue Reeves

Branch AV Co-ordinator

Sue is a retired MND Nurse Specialist and arranges all our Visitors.

susan@mndawestsussexsouth.co.uk
07973 182782
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Angela Burgess

Association Visitor

Angela is a retired Teacher / Social Worker and been an AV since 2002.

angela@mndawestsussexsouth.co.uk
07710 662484
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Pru Tearall

Association Visitor

Pru is a retired Occupational Therapist and been an AV since 2015.

pru@mndawestsussexsouth.co.uk
07592 215311
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Pattie Shaw

Association Visitor

Pattie is a retired Social Worker.

pattie@mndawestsussexsouth.co.uk
07845 788769
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Anne Coleman

Association Visitor

Anne is a retired District Nurse.

anne@mndawestsussexsouth.co.uk
07979 555559
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Valerie Sharp

Association Visitor

Valerie’s background is with Social Services and Voluntary Sector

valerie@mndawestsussexsouth.co.uk
07557 900710
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Becoming an Association Visitor (AV)

Are you a good listener? Caring? Practical? Would you be interested in joining our AV team?

As potentially the most important service the Branch provides, the AV is a crucial and hugely rewarding role. If you think you can provide the much needed guidance and support to people in their hour of need, please do get in touch. Previous experience in the health and social sectors although advantageous, is not necessary.

After a combination of interviews, excellent award winning professional training will be given that encompasses distant learning, teaching and experiential training. Ongoing support and update days will also be provided and all out of pocket expenses are reimbursed.

When you become an AV, you become the linchpin for people living with MND and their carer – being someone they can offload their worries to, to making financial aid requests to the Branch or just being that understanding and ‘informed friend’.

Knowing that you’ve been able to help people through this difficult time, is a hugely humbling experience, being allowed into someone’s home during their journey through MND and helping them through some of the hard decisions and experiences. But you’ll go home knowing you’ve helped someone through a difficult situation.

For more information or to find out more visit the MND Association website or contact our Branch AV Co-ordinator Sue Reeves on 07973 182782 or susan@mndawss.org.