“In 2003 The Maypole Project was founded; a unique provision specifically for families with children with complex medical needs.”

Sally Flatteau Taylor, Founder, CEO and Lead Therapist at The Maypole Project tells her story of working with Battens families

In the mid-1990s I started a new career as a counsellor, co-directing the development of a bereavement coordination service for my borough. It was here that I found myself drawn to counselling family members where a child or children were living with complex medical needs. It gave me an insight into the intensity of families’ experiences and the huge breadth and uniqueness of their responses. 

The Maypole Project

At the same time I became aware of a lack of appropriate services which were able to respond effectively to meet these families’ needs, which sadly is still true in the most part. However this realisation sowed the seed of an idea to create a new organisation which could address this gap. In 2003 The Maypole Project was founded; a unique provision specifically for families with children with complex medical needs. 

Word of Maypole’s work spread swiftly; initially to our neighbouring borough, Lewisham, then across south east London, and soon, through training and presentations, Maypole was accessed across the whole of the UK.

Maypole and the BDFA

It wasn’t until 2013 that I heard of the BDFA. A family support worker visited us to learn more about our work and she soon realised that our knowledge, experience and ability to work across diagnoses, research and publications could be invaluable to families with children who have Batten disease. From that point The Maypole Project started to work with the BDFA, providing training and reflective practice sessions for their staff team.

As our working relationship developed Maypole were invited to the BDFA annual conference to facilitate groups for bereaved families. These were well attended; the need was self-evident. We continued to attend the conferences over the years, adding in discussion groups for professionals who had expressed an interest in conversation around loss and bereavement, and later adding a ‘craft and chat’ group open to all families and children.

The importance of community

I was struck by several things at these conferences: the relief and joy of families meeting each other afresh or deepening existing friendships was almost tangible. This was of course mixed with the sadness of seeing the children and how this disease had changed their lives across the intervening year. 

Creating such meeting spaces is vital to break down the walls of isolation that families feel so intensely, especially with a rare condition like Battens. The families come from different backgrounds, have different experiences and different responses and they come from right across the UK, but there is one important experience they all have in common: that of having a child or children with Batten disease.

The Maypole Model

So through the years, The Maypole Project has grown and, through families’ feedback, continued to develop its model of working, providing family-centred emotional and social support for the whole family: siblings, the ill or disabled child or young person, the parents, and grandparents.  We promise to stay alongside families for as long as is needed, the support is tailored to each family’s individual need and can take place at home, school, hospice or hospital.

We have learned that to be effective, emotional support needs to be provided in a safe space by a person who is trustworthy, consistent and accepting. We train our staff to have a level of ‘knowing’ – with insight into what families may be going through and the possible associated reactions. We know that from a child’s diagnosis every aspect of life will be impacted. What we don’t know, and totally respect, is the unique response, feeling, and experience of each individual. Families are the experts in their own lives.

The aim of the Maypole Model is to create a space to talk about experiences, ways of coping, behaviours, and reactions. E M Forster said “How do I know what I think until I see what I say?” My philosophy is that only through relating one’s story can we truly express and connect our feelings. 

A wider net

At The Maypole Project part of our vision is to ensure that the services around the family are equipped to respond. We therefore also work with the organisations and other professionals surrounding families, to train them and give them the tools they need to support each family. 

Working with so many families of children with complex needs we see that although there are significant differences of experience and response between individuals, there are often also significant similarities when a child is diagnosed. With some rare diseases, such as Battens, families can just fall through the net of appropriate emotional support. At Maypole, we can use our experience and understanding of families in similar situations, if not identical, to offer the support they might otherwise miss out on. 

From my own perspective, being invited into different mutual help settings, to help groups explore feelings and reactions, has, across the years, been a bigger compliment to me than being asked to talk at international conferences and training programmes. I am always humbled when family members come to talk to me or a member of my team; sharing their lives, their experiences and deepest fears and concerns… alongside the love and happiness too.