An engagement report produced by East Lothian Health and Social Care Partnership in partnership with East Lothian Council and Shared Care Scotland has been published, emphasising how hard holiday periods are for parents and carers of children with additional support needs, and how the isolation this causes impacts the whole family.
In April 2020 Shared Care Scotland published a piece of research called “Holidays or Isolation”, which highlighted the experiences and challenges faced by disabled children, young, people and their families over the holiday periods.
East Lothian Health and Social Care Partnership and East Lothian Council aimed to build on this and understand what would make a difference in accessing holiday activities locally.
The research and engagement project heard from young people, carers and providers of holiday activities, each providing detailed descriptions of their own personal experiences.
While most parents can find it difficult to find suitable childcare or things to do, especially during the long summer break, those with children with additional support needs are further disadvantaged by a significant lack of activities and spaces they can access.
Parents and carers said they feel restrained, restricted and stuck with many sharing their frustration that universal activities were not possible for them due to a lack of specialist supports. While some specialist provision is available, parents commented on the high levels of competition to gain access to limited palaces. Instead of looking forward to holidays, this can be a very stressful and potentially lonely time with some parents describing how they feel stuck in their homes.
Crucially the project was able to identify what happens when organised activities are available, and play spaces are accessible.
One parent commented: “This year we smiled our way through the holidays. Our daughter was an entirely different person compared to how she’s been in previous years. She was happy, stimulated, slept quite well, enjoyed being in the company of other young people. She thrived on the routine which she desperately needs every day, her confidence grew in a way we didn’t expect to see.”
This discussion comes at the time of significant promise to carers with the legal right to a break having been given royal assent and implementation set to take place over the course of the next parliamentary term. To deliver this fundamental right for carers of young people with additional support needs will need significant investment. But firstly, we need to hear from people with experience to understand what will make a difference.
We would like to thank all those that contributed to the surveys, sessions and discussions, especially the young people, parents and carers but also those from local organisations who expressed such genuine desire to make things better for people locally.
Following the engagement, a number of local actions and commitments have been identified as a result. So far this has included:
- A review of East Lothian’s children’s disability service secured the development of pilot projects, part funded by East Lothian’s Carers Act funding, to deliver additional support during the easter and summer holidays 2026.
- A playpark advisory group has been established to work alongside Council teams on projects to ensure genuine accessibility to local places and play spaces for children with additional support needs.
- Increased information will be made available to parents and carers of children with additional support needs, including the promotion of East Lothian’s Short Breaks Services Statement.
- Feedback gathered has been directly incorporated into East Lothian’s Carers Strategy 2026-29 to inform actions and further support for unpaid carers.
In September 2026, a series of webinars are being planned to share learning from this engagement, using the voices of parents and young people themselves to encourage further commitments from local providers to identify ways in which they can support parents and carers of children with additional support needs during holiday periods.
Councillor Fiona Dugdale, cabinet spokesperson for education, children's and family services commented, “School holidays should be a time for fun, play and quality family time. It should not be a period that families come to fear and dread. We are incredibly grateful to everyone who has participated in this engagement project. Hearing, listening and understanding the challenges you face are vital to understand how we can move forward, and take meaningful action. I would especially like to thank the children and young people for sharing their ideas and suggestions.”
Councillor Shamin Akhtar, cabinet spokesperson for health and social care commented, “The responsibilities and daily challenges faced by unpaid carers are only increasing. More and more demands are being placed upon them. Through this research, the establishment of the playpark advisory group, and our ongoing commitments to support carers and reinforcing their right to a break, we aim to make a real difference to families with caring responsibilities across East Lothian.”
Download the East Lothian Carers Insight Holidays or Isolation Report here.
Find out more about support for carers at www.eastlothian.gov.uk/carer