Cuppa Conversations

In 2011, a routine hospital visit turned into a nightmare for 13-year-old Louise when she contracted a severe bout of swine flu. Little did she know, this event marked the beginning of a relentless battle against a debilitating and complex condition that would drastically change her day to day existence, deeply affecting her quality of life. Chronic fatigue and excruciating pain left her bedridden and reliant on the constant care of her mother, Jane. By the time Louise turned 14, Jane realised that her daughter’s life had permanently changed.

"Her life as she knew it was gone.”

It took six more years of Jane persistently advocating for her daughter’s health and urging healthcare professionals to investigate further before they finally diagnosed Louise with severe myalgic encephalomyelitis (ME), a life-limiting neurological condition with no cure, identifying the cause of her suffering.

However, this diagnosis, while providing some relief also introduced new challenges. Namely, that ME, also known as chronic fatigue syndrome (CFS), remains widely misunderstood leading to harmful misconceptions and leaving families like Jane and Louise in search of understanding and support. It was during this time that Jane discovered Carer’s Cuppa, a local initiative by ellenor, a hospice charity known for its holistic care for individuals living with life limiting conditions and their families. Despite having initial reservations about joining a hospice community, Jane found ellenor’s Carer’s Cuppa to be a vital lifeline – a safe place in the midst of confusion and lonely times.

ellenor’s Carer’s Cuppa is an opportunity for local people, who are caring for a loved one with a serious illness or long-term disability, to meet others on a similar journey.

Held every fortnight at the Gravesend’s Best Western Manor Hotel, it serves as a space for caregivers like Jane to meet, share experiences and enjoy a moment of respite – to put themselves first.

“With the Carer’s Cuppa, I’ve got support for the first time ever. Before this, Louise and I were totally on our own. Every one of us in that room out there has been caring for someone with a different illness, so we’ve all got that in common. It’s a couple of hours, every month, to have some ‘me time. I have discovered a community that cares and supports fundamentally changing our lives".

In addition to attending ellenor’s Carer’s Cuppa, Jane occasionally participates in ellenor’s Bereavement Cuppa., a weekly gathering for those coping with loss. This group, alongside ellenor’s counselling services, has been instrumental in helping Jane address years of repressed grief, particularly the death of her brother.

Held every week in Gravesend and Dartford (and every third Saturday in Swanley), the Bereavement Cuppa brings bereaved local people together in an informal, supportive setting to share and listen. Jane has also been accessing ellenor’s counselling service for a more structured, one-on-one approach to dealing with grief, and coping with the demands of being a full-time carer.

So – what advice does Jane have for any other local people facing similar circumstances – those caring for someone full-time, or who have lost someone close to them?

“Don’t give up fighting,” Jane says, “because it is a hard fight. Even better, get in touch with ellenor, and find out what services out there can help you. It wasn’t until I started coming here that I realised that, actually, people do care; and that even if they don’t understand at first, they’ll try and understand.

“People think that ellenor is all end-of-life care, but it isn’t. It’s changed everything for us, because if we need help – or to ask something, anything – that’s all we have to do.”

By highlighting ellenor’s services earlier, we aim to illustrate the immediate impact and value they bring to families like Jane’s, while still conveying the challenging journey they travel.