Helpless, isolated and powerless: Encompass Caithness survey leads to demand for improved services
A survey has revealed that many families in Caithness feel “helpless, isolated and powerless” over failings in support for people with autism, neurodivergent conditions and additional needs.
Members of the pressure group Encompass Caithness say they are determined to use the findings to highlight shortcomings in service provision. They are calling on the Scottish Government, Highland Council and NHS Highland to “address historic wrongs” and devise an improvement plan for the county.
The survey results were shared at a meeting in Wick on Monday night, after which the group’s vice-chairperson Annemarie Simpson emphasised that its campaign is “far from over” despite the recent news that Highland Council is to reinstate Thor House in Thurso as a respite facility for children.
According to Ms Simpson, Caithness is “crying out” for a day centre and she argued that the survey highlighted clear breaches of human rights.
A total of 115 people responded. In the context of service cutbacks and closures of former social work centres and residential facilities, many reported feelings of having been ignored or abandoned.
Introducing the findings, group adviser Dan Mackay said: “People felt helpless, isolated and powerless and the survey results provide undeniable evidence that we feel cannot be ignored.”
In some cases people had been waiting years for a diagnosis. Interrupted education was often the norm, Mr Mackay pointed out, and the absence of planned transitions affected their moves into adult services.
Outlining the group’s aims, he told the meeting: “We want to see action to address historic wrongs. We are calling on the authorities – the Scottish Government, Highland Council and NHS Highland – to devise and implement a Caithness-specific improvement plan and demonstrate to local families that their concerns are being treated seriously and that they will do something about it.
“We expect to be fully included. We want regular updates and we demand that services improve.”
Speaking later, Mr Mackay said: “We are determined to use these results to highlight failings of service provision and to convince the relevant authorities of their statutory obligations to some of the most vulnerable members of the community. They have been very badly let down and deserve so much better.”
For chairperson Sarah Scollay, the most striking theme to emerge from the survey was the sense of isolation.
She said: “When you’ve got a child with additional needs it’s quite lonely at times. You can’t go to certain places because they can’t handle the sensory side of things, or there are too many people, it’s too busy... so you are kind of confined to your own home because there is nowhere else to go.”
Ms Simpson described the response rate as “massive” compared with regional and national surveys.
“They were writing essays – it was substantial,” she said. “We knew it wasn’t good but I think the survey really drove home just how bad it was.
“We got some comments that were suicidal – people didn't want to be here any more. It was that bad.”
Ms Simpson emphasised: “The campaign is far from over. Children’s respite is being reinstated but adult respite does not exist, and it does need to exist, because people with autism and additional needs who are young grow into adults and their needs don’t change.
“Caithness is crying out for a day centre. That came back strongly.”
Ms Simpson stressed that the group will remain positive in its campaigning efforts.
“We have never ever been a finger-pointing campaign,” she said. “We’re aware that the need is great, we’re aware that the resources are few, but we’re also aware that people power can come together and can make change.
“What we’re about is getting the right people in the right rooms to have these conversations to facilitate the changes happening.
“It’s never about attacking anyone because we want to be on board with people.
“We’re not blaming the schools. We know they’re understaffed, we know they’re underfunded, we know they’re under-trained – we want to help that, and it’s important to get that message across.”
One person attending the meeting in the Rosebank Bowling Club pavilion described the survey results as “gut-wrenching”.
The next step for Encompass Caithness will be to set up a series of subgroups.
Meanwhile, a “one-stop shop” advice event will be held at Mackays Hotel in Wick on Thursday, November 7, from 10am to 4pm.
Ms Simpson explained: “We’re putting all the agencies under one roof for families to come and work the room. We will also be making little packs of information for people who can’t attend and we’ll get these packs put out to them.”
Encompass Caithness held its first meeting in October 2023 and has raised over £7000 since the start of the summer. The group was chosen as charity of the month for September at Pulteneytown Parish Church and that brought in £635.
