In Memory of West Sussex Branch AV Sandy Barrett

Vice Chairman, Association Visitor & Association Visitor Coordinator

Sandy had two passions golf and our Branch. I played golf with her one day and said I was retiring. Little did I know how her mind was working on that day. She phoned me and said would I go and meet her as she had a proposition. Well what a daunting thought. I will admit I didn’t actually know what MND stood for at that time…

You just couldn’t say no to Sandy. If my memory serves me well it was “We won’t break friends over this if you say no but would you become Chairman of the MNDA West Sussex South Branch. I will be your vice and show you the ropes. It’s only a couple of hours a week”. The rest is history and how lucky was I?

She introduced me to a Branch where we have a fantastic treasurer who is tenacious and a stickler for detail. A really enthusiastic team on the committee who are always happy to help and support all of the events. A fantastic team of AVs who are dedicated, kind and caring to all those pwMND. Everyone involved is passionate and dedicated to the Branch and what was most obvious was the fondness and high esteem, people from all areas of the Association, felt for Sandy.

As a tribute to Sandy, in this newsletter, we have contributions from a range of people who knew and worked with her throughout her time with the Association, serving the Branch and supporting people and families with Motor Neurone Disease. What is apparent as you read them is a set of recurring themes. An unassuming dedication and accomplishments shown through her tenacious ‘can do’ attitude and never taking ‘no’ for an answer.

Her preference for being in the background, working tirelessly, but not wanting nor expecting a fanfare of thanks. She was also such fun to be with having a great sense of humour and a way of making everyone feel valued. Most importantly, what shines through, was her empathetic, supportive and warm personality. Sandy will be greatly missed by us all and what a legacy she leaves behind.

Maureen O’Neill – Branch Chairman MND Association West Sussex South Branch

In honour of Sandy, the branch has now set up an SMS text messaging donation service using her name.

Please see our donations page for full details.

How Sandy became involved with the Motor Neurone Disease Association and the West Sussex South Branch

Having recently retired Sandy met up with a work colleague at, of course, a pub, for a catch up. Yes, you have guessed that work colleague was Angela Burgess. One thing led to another and, as some of you will know, Angela can be a bit like a lovable terrier when she wants something to happen.

Sandy duly found out more about what would be involved and where best she could fit into the local branch. She took herself off to be trained then set about doing what she was best at – “making things happen”. Not only did she have to acquire medical knowledge about MND but shock horror computers.

Luckily, she had a vast army of friends to show her how to do a spread sheet and many other tips which could and would be passed on around the Branch. Sandy’s background dealing with Social Services was invaluable when knowing how to short cut routes to obtain a blue badge, a grant or whatever she felt would make someone’s life easier and better. Sandy’s ability to absorb information and being able to retrieve it when required was invaluable, she was a people person ready to impart information, guidance, or even just listen. Her vision was to take the branch forward with the association visitors feeling part of a valued team.

She was always keeping up to date with the latest information, as well as being there to assist with fund raising, publicity (how did she always have that camera at the ready!), not to mention the latest research. Then after three or four years it was time for a new Chairman, just how many years had Sue Kruger been at the helm and rightly, she wanted to visit her grandchildren and have a bit of time for herself. Who could fill this enormous gap – probably after some behind the scenes work, Sandy agreed to take on the task.

She became Chairman jointly for a year which turned into two as well as being an Association Visitor to a large number of people who suffer from Motor Neurone Disease and Branch Care Coordinator. Then over a game of golf one day Maureen mentioned she, having just retired, was looking for something to do – Sandy stepped aside but agreed to be Vice Chair just while Maureen found her feet.

A Tribute by John Albon

Barbara and I were so very very sad to hear the devastating news of Sandy’s untimely death. She will be sadly missed by everyone who knew and loved her.

I was diagnosed with MND in July 2018 and introduced to Sandy in November 2018 by Sue Reeves, my MNDA visitor, as the fundraising advisor for the Branch. Her approach was very professional coupled with a wonderful sense of fun and nothing seemed to faze her, to Sandy everything was possible.

Consequently it was a pleasure to work with her and her enthusiasm was infectious. Barbara was planning to run golf day for the MND Association and Sandy, being a keen golfer herself, was delighted and immediately offered to help and get involved with planning the event. She assembled a team of helpers to make the day a success.

Subsequently we worked with Sandy on several events and nothing was too much trouble. She was a person who got things done. Never downhearted, always positive with a wry sense of humour and a wicked smile.

She helped me forget about my MND and enabled me to focus on other things and was so supportive to everything we were trying to do. For those 18 months it seemed like the three of us were engaged full time in planning fundraising events. It was a privilege to call her a friend.

Rest In Peace


A Force Majeure and my AV

It seems totally unimaginable now that we lost Sandy recently. Her passing was a complete shock. Such sudden events remind us all of making every day count. And I know that Sandy certainly did that! Mixing gravitas with an amazing life, she was a true force majeure. I only knew but snippets of her life before the MND Association and that she had travelled and worked abroad extensively, including a fascinating time in South Africa. She shared with me a love of live theatre and we had similar, often blunt, views of some shows as well as praise!

I only came to make Sandy’s acquaintance after her retirement when she became my MND Association visitor.

She was very special indeed. Nothing was ever problematic. After I was dropped into the chasm that is MND, and then throughout the 6 years I came to know Sandy, she was an ever present ‘go to’ person and a friend.

It was sometime back in June 2014 that Sandy came into my life. Little did I know what to expect that day after the innocent phone call I made to the MND Association simply asking about travel insurance advice. I was kept on the phone line, and was taken into the arms of our wonderful charity.

“You will receive a visitation!”, I was told…

One week later the visitation appeared, in the form of Sandy, on our doorstep, like a whirlwind! After making herself comfortable on the settee with Jean and I, she uttered these very words…

“Well you have this shitty disease, then?!”

From what sounds like quite a tough and blunt opening statement but was actually a well disguised and deliberately placed ice breaker set to test us, we were immediately at ease and became firm friends. Such a skill was masterful. Sensing, intuition and observation all wrapped up into a wonderful package, and called Sandy.

Sandy, it’s been a pleasure and an honour to have known you. I miss you, and the MND Association has been robbed of a guiding light.


All things bright and beautiful

I have been fortunate to know Sandy for over 30 years. Firstly as a warm and professional colleague and latterly as a compassionate and excellent AV co-ordinator.

When she retired we went out for lunch and she asked me what I was doing with my life. I told her about my role as an AV, she showed interest and I seized the opportunity. What a lucky find she proved to be. Sandy threw herself into helping PWMND and so many people benefitted from her dedication and commitment. Her capacity to care knew no bounds.

I don’t believe Alastair realised how she so willingly and expertly she guided both Pattie and myself through the rigors of filling in expenses forms.Straight forward for most but challenging for the computer illiterates!! How we will miss her and her wit. She has left a huge hole in the lives of many.

She was all things bright and beautiful and will be a shining star in the sky over Angmering for many years to come.

I just hope the golfing is good in heaven and she is teaching God how to play!!!


The “ever present” Associate Visitor

I really cannot recall exactly how or when I first met Sandy – she was just suddenly there!!

I was new in my role as the MND Specialist Nurse. This lovely lady from the MNDA phoned to introduce herself and we met for coffee (which was to become a regular occurrence!!) We discussed the role of the Association Visitor (AV) and how we could work together for the benefit of people living with MND and their families. It struck me just how caring, thoughtful and inspiring she was.

Sandy invited me to meet her AV’s who were so energised, motivated and passionate about the people they were supporting with MND. I continued to work alongside Sandy and her team of AV’s for many years during which time we formed a strong bond. We undertook a number of joint visits together, often to complex and challenging cases. I remember Sandy being calm, reassuring and always ‘getting things sorted.’

When Sandy heard that I was retiring I felt she had me in her sights to join her team of AV’s and sure enough a few months after I retired, she contacted me. We met on a number of occasions for coffee or lunch before she reeled me in with her power of persuasion, charismatic charm and warm smile. I will always be grateful that she did.

I’ll never forget her sense of humour, kindness, friendly thoughtful ways and that talent she had of always making everyone feel very special. She never liked being in the limelight, working tirelessly behind the scenes and on fund raising events always had her camera in tow!!!

Sandy as the AV co-ordinator was ‘ever present.’ Her enthusiasm and energy knew no bounds. She always had the best interests of those living with MND and their families first and foremost often ‘bending the rules’ to their favour.

Sandy was a great support to all her AV’s, and we miss her.

We will endeavour to carry on all the fantastic work Sandy has done for the branch and make her proud of us, as we are of her.

Sue Reeves

She devoted herself so tirelessly

I had been Chairman of the branch for about 2 years when Sandy joined us as a new visitor with a social work background. She was so quiet and unassuming at first, that it took me a while to realise that she was quietly taking on the support of more and more people living with MND, reorganising the way that we provided equipment and liaising with health professionals and companies to improve the service they received.

When the post of visitor-coordinator became available, she was the natural choice for the post and continued to increase her workload and make more improvements to the service. Her great rapport with the regional care advisor, MND nurses and health professionals ensured that the branch was taken seriously and that our visitor service became one of the best in the association. She spent hours travelling great distances to visit people or attend conferences and meetings and nothing was ever too much trouble for her.

When I retired as Chairman 6 years later, she reluctantly agreed to take on the post for a year until someone else could be found. This increased her workload greatly and she also became involved in fundraising, organising branch and committee meetings and the general responsibility for the branch. She also managed to persuade Maureen to take over the post, inducted her into it and found several new committee members. The branch will miss her enormously and owes her so much, but the greatest loss is to the many people living with MND and their families, to whom she devoted herself so tirelessly.

Sue Kruger

Always busy with a wonderful sense of humour

In about 1989 I shared an office with Sandy in Social Services Littlehampton where she worked as a Senior Home Care Organiser. She managed a big team of carers supporting a large number of clients. Initially I thought she was a bit “scary” as she was so efficient and always busy, but I soon found out there as a caring side to her nature and a wonderful sense of humour.

I can remember sometimes on a Friday she would be heading off to the Amsterdam pub in Shoreham to cook for the weekend as they were short staffed, her husband ran the pub at that time. I was in awe of how she just took the task on with a “can do” attitude. I feel this was her approach to life in general. She was so supportive to me recently and we miss her so very much.

Valerie Forsyth, AV

A brilliant person to work with

I met Sandy, together with the other Association Volunteer Co-ordinators from Surrey and West Sussex, not long after I started in the RCDA role for Surrey & West Sussex in 2014. I immediately realised that I was going to be extremely lucky to be working alongside such a committed, knowledgeable and enthusiastic member of the team in West Sussex South.

Without Sandy, I know my role would have been far more demanding. She was the one that the AVs went to as first port of call, and to whom the new referrals for support went to. Sandy was always willing to work with me on new ideas and meeting with, and raising awareness amongst the local health and social care professionals.

I was always aware that Sandy undertook her volunteering like a paid role and tried to be mindful to ensure she didn’t feel overloaded, but when the Branch’s Tolworthy legacy provided the opportunity to develop some new ‘pilot’ local services funded by the Branch, Sandy in her usual way was eager to help and support. Without her input and willingness to take on some of the administrative processes the local delivery of a counselling CPD course focused on supporting people with MND; the domiciliary counselling service with Sage; and the arrangements for transport to Lane Fox would not have been possible.

Not only was Sandy a brilliant person to work with, but we became firm friends; able to speak our minds and have a good laugh. She was always ready with a smile and encouraging words. Her very sad and sudden passing was such a shock, and leaves a very big hole in so many lives.

It was a privilege to have worked with her and been able to call her my friend.

Jane Giles

So patient and helpful

Sandy was such a kind and lovely woman.

Sandy took on so much responsibility for people with MND and the association and was always there for myself and my fellow AV’s.

Sandy was so patient and helpful, when I often rang for advice and help about anything at all.

Sandy always had such empathy and understanding if you were feeling low or struggling in your personal life and would be supportive and kind.

I miss her very much and I still become very emotional thinking and talking about her.

Sandy will be missed and always remembered by us all.


A breath of fresh air

Although Valerie had known Sandy in a previous existence, I met her first when she joined our Branch as an AV and quickly took over as co-ordinator when Linda Vaughan left us. Sandy and I hit it off very quickly, as we definitely saw the world from very similar standpoints.

Like me, Sandy was direct and did not suffer fools gladly (or at all, one might say!). We sorted out processes and procedures between us very quickly as she was very open and always approached problems from a “what we should we do to solve this?” standpoint, which I found very refreshing.

This, combined with her dry sense of humour, enabled us to work very well together and we became good friends over these years. I shall miss her in the Branch and as a friend.

Alastair Sharp, Treasurer

She was always there

I first met Sandy at Denman’s Garden Centre 9 years or so, ago. An inauspicious meeting that was to lead to my connection to the MNDA West Sussex South Branch as an Association Visitor.

I had already been a committee member through my association with the late Bubbles Simmonds. I felt I wanted to contribute more in a different way and Sandy had a way with her that demanded no saying ‘no to’! You all know that look, that cheeky grin – the one that says ‘gotcha’ – that followed on from serious important discussion about this horrible disease we are all striving to defeat.

Such an important person in my life and in the lives of we committee members, people with MND and their carers, every level of the organisation that serves MNDA and to Pip, Graham and Rob. Kind; determined; supportive; funny; She gave so much of her time and had a lightness of touch that belied her seriousness. She was always ‘there’. That she suddenly is not, is still hard to comprehend. Miss you Sandy. RIP.

Kate Taylor

One of a kind

What can I say, she was a lovely person and will be missed I am sure by all of us.

She did so much for the branch which was outside her role. Whenever I phoned her with a query she was nearly always able to give me the information I required, but on the very rare occasion that she was not able to, she was always able to point me in the right direction.

When we spoke not only did she ask how I was, she always asked after my daughter, Katie, who also helps us on occasions as a volunteer. I will miss her greatly, and it will be very hard for someone to fill her shoes, she was one of a kind.


A star loved by us all

Sandy welcomed me into the AV team 7 years ago. I will remember her for her cheerful, positive personality, her devotion to her voluntary work for MNDA, and being a rock to lean on for advice and help.

She was always there on the other end of the phone. She stepped in to support us all, never in the limelight but working behind the scenes to ensure the smooth running of the team. Nothing was too much trouble. She always made me feel valued. She was a star, loved by us all, and sorely missed.


Not forgotten…

If anybody else would like to add any other thoughts about Sandy, please email them over to us, or use the comments area below.

Thank you

Send a donation in memory of Sandy

via our new SMS text messaging service on your mobile phone

  1. Select the amount you would like to donate, anywhere from £1 to £20 maximum per text
  2. Send an SMS text message to 70085 with the phrase “MNDSANDY” followed by a space then your chosen amount in whole number format.
  3. Texts cost your donation amount plus one standard rate message set by your provider.
  4. E.g. “MNDSANDY 10” send to 70085, would send a donation of £10 (+ message cost) to the MNDA West Sussex South Branch.
  5. If you want to donate more via SMS, you will need to send another message repeating the instructions above, else consider using PayPal for larger donations…

The code MNDSANDY was chosen in memory of our previous chairperson and AV co-ordinator Sandy Barrett who sadly passed away in the summer of 2020