Hello everyone,
I’m reaching out today to share the struggles as a carer here in Shetland and to ask for your advice and support. I care for two autistic children—one of whom is an insomniac—while dealing with my own serious autoimmune condition. For many years, was caring for 20 hours a day with barely any respite. Although I was given six hours of “respite” per week for one child—respite is defined as a break from care. I never got a break from care, no matter how ill I was. When I fell ill, I expected to have an emergency plan in place, (I was told I did), only to find out later that I didn’t—and shockingly, no one in Shetland has an Adult Carer Support Plan (ACSP). NOBODY.
In response, I started the Shetland Neurodiversity Project to advocate for the rights of neurodivergent people and their carers. Our vision is to create social enterprises that help fund care and provide work opportunities for neurodivergent Shetlanders, who are all too often left behind by our current system.
Yet, every time I try to fight for what we need—a proper ACSP—the Integrated Joint Board here refuses to listen. We’re supposed to be equal partners in care, but instead, I feel dehumanized and ignored. There’s even a board member who is meant to represent carers, but he won’t speak to me or conduct an equality and human rights assessment on our behalf. The carers strategy is years out of date and the Cares Act is not implemented. It seems that the board is more interested in ticking boxes than truly upholding the Carers Act.
I wonder: How do we hold those in power accountable when they have the means to crush our voices? How do we get the board to treat us as partners in designing the service, to behave ethically, and to respect our human rights without gaslighting us? Could a class action lawsuit be the only way to force change? Or is there another way to push for the implementation of the Carers Act here in Shetland?
I’ve noticed that our national Carers Act Implementation Steering Group—the very group that was supposed to support us—has been disbanded, leaving us with even fewer allies. In contrast, someone like Simon Hodgson from Carers Scotland stands out as a strong advocate for carers across the country. Could his experience and broad mandate be what we need to push for better support and policies in Shetland?
I’m reaching out to The Carers UK community: Have any of you faced similar challenges? How have you managed to hold institutions accountable when promises aren’t kept? What about institutional gaslighting, is that prevalent everywhere of just Shetland? What strategies or actions have you found effective in ensuring that carers’ rights, as outlined in the Carers Act, are respected?
I’m open to discussing this further privately if needed. Find me as shetlandhardy on Instagram and send a private message, if you want to talk privately. Any advice, support, or connections you can offer would mean the world to us. We need to come together to ensure that carers in Shetland are finally given the protection and respect we deserve.
Thank you for taking the time to listen. I look forward to hearing your thoughts and suggestions.
Sincerely,
DM Schofield
Carers Scotland put out a warning during the pandemic that touched my heart:
Simon Hodgson, Director of Carers Scotland, warned:
“Many carers in Scotland are at breaking point and it is vital that the Scottish Government and local partnerships ensure that services they need to sustain caring and their health and wellbeing – are reinstated as soon as possible.
We recognise the specific challenges of the pandemic but are clear that, where it is not possible to reinstate traditional services, alternatives should always be offered to ensure that carers do not continue to feel they have been left to struggle on alone.
“The Scottish Government must acknowledge the enormous contribution made by carers during this pandemic – the value of which is a staggering £43 million every single day - and prioritise their health, wellbeing and resilience this winter.”