Guest blog: Our journey as Lifelong Carers
9 June 2026
Guest blog: Our journey as Lifelong Carers by Ken and Helen
Ken is a Lifelong Sibling Carer for his sister.
Helen is a Lifelong Carer for her daughter.
By the time we arrive at adult services, we have navigated children’s health services, education, and social care. By this time, many of us are emotionally and physically exhausted.
We both attend Minstead Trust’s Carers Forum, which is for family carers of adults with a learning disability, and who live within Bournemouth, Christchurch, and Poole. We meet on the first Wednesday of the month at 7.30 pm online. This is facilitated by Dawn Wood, who is currently supporting us as our Carers representation coordinator from Minstead Trust.
We can share any concerns we have regarding caring for our learning-disabled loved ones. We support each other and share any useful information we may have.
We invite speakers, e.g., from BCP Council Adult Social Care and other organisations to speak to us.
You can attend as many meetings as you wish.
Being a part of the Carers Forum is a way of helping us to feel we are not alone in this often-difficult journey.
Some of us attend the Learning Disability Partnership Board Meetings within BCP Council.
If you’d prefer not to attend the Carers Forum Meetings, you can sign up to receive any feedback from the Meetings and any information that is shared.
For those of us who attend Partnership Board meetings, Dawn will often attend to support us and, where appropriate, will provide feedback on any relevant information to the Carer’s Forum.
(Left) Ken with his sister (Right) Helen with her daughter
Lately, the word ’empathy’ has popped up in subjects ranging from workers’ relationships in an agricultural co-operative to Natalie Cassidy from EastEnders in the BBC TV programme’ Caring Together ‘.
But what does it mean? Type the word into the PC, and you’ll get …
AI overview:
‘EMPATHY is the ability to understand and share the emotions, experiences and perspectives of another person’.
It is often described simply as “putting yourself in someone else’s shoes “.
At our monthly Carers forum meetings, the word EMPATHY is something that often pops up in conversations and the need for professionals to show more empathy towards family members of our Learning-disabled adults.
The Learning Disability Team had been working closely with our carers’ representation Co-ordinator from Minstead Trust and Carers.
This included comments and complaints about the services they received.
This work highlighted the need for professionals to gain a deeper understanding of family carers’ journeys and the impact these experiences have had on them, in particular as carers for someone with a learning disability are often lifelong carers.
Carers emphasised that more empathy and better communication with families could prevent or reduce the escalation of situations, positively affecting everyone involved in the person’s support and assisting with building positive relationships.
Helen presenting to The Learning Disability Team
Two carer representatives (Helen and Ken) worked closely with Anja Ford, Service Manager in the integrated learning disability team, to develop an awareness session.
This was a presentation – Our journey as Lifelong Carers training for professionals. Helen and Ken, both Lifelong carers, delivered to a church hall full of professionals from the integrated learning disability team back in May 2025.
The approach to the presentation was the lived experience of two carers with very different lifetime journeys and perspectives.
- Mum and Brother
- Child of the 90s / Child of the 50s
- Verbal / Non-verbal
- An ambition for independent living / or to remain in the family home
- Require support /minimal contact
One thing in common is a diagnosis of Learning Disability and two carers who have dedicated their lives to protect and improve the life of their family member.
We felt it was important to highlight during our presentation the amazing work sibling carers do and the impact their caring role can have on their lives.
We played a short, thought-provoking video clip and showed slides alongside our presentation.
A sticker of our logo was presented to each of the professionals attending the training session, which promoted Lifelong Carers.
Carers who care for someone with a learning disability are usually Lifelong Carers, and this is very different from many other caring roles.
To adapt ancient Greek philosopher Aristotle. who advised family carers and professionals to build relationships on
Pathos (empathy) and Ethos (shared beliefs and values).
Before we can effectively get down to the message in a logo (broadly means to understand one another).
At the end of the session, we received very positive feedback from the integrated learning disability team that emphasised the importance of personal narratives and carers’ perspectives in awareness sessions. The session assisted workers to gain a deeper understanding of Family Carers’ journeys and the impact these experiences have had on them.
We received practical and emotional support throughout and after the preparation process from the Learning Disability Team management.
We felt that the process had been cathartic, and working alongside the Service Manager from the adult learning disability service had given us a better understanding of workers’ roles and responsibilities and the risks that must be dealt with within the service.
We hope to roll out our presentation to other teams within BCP adult social care in the future.
We plan to recruit further Family Lifelong Carers with different stories to present alongside us.
Our aim is to highlight the support that is needed from adult services to support and make a positive difference to the lives of family carers and their learning-disabled loved ones.