Parents and carers of disabled children in Tayside are calling for better access to post-lockdown respite, saying they are suffering due to lack of support.
Allan Petrie, a Dundee grandfather who provides full-time care for his 12-year-old granddaughter, said he and other carers across the region are in desperate need for more respite after struggling alone during lockdown.
His granddaughter, Megan Sinclair, attends Glenlaw House in Dundee, which provides respite and overnight care for children and young people aged with profound learning disabilities and complex healthcare needs.
But the number of beds available has reduced due to coronavirus and despite restrictions easing, the facility is still running at a reduced capacity.
Allan Petrie, 51, is the guardian of his three grandchildren and gives around the clock care to his granddaughter, who has FOXG1 syndrome, a rare and genetic brain condition.
He said lack of respite care is leaving parents and carers exhausted – and blames this for his own ill health after having a stroke earlier this year.
He said reduced beds means children are visiting the centre less often.
Allan is chairman of the Glenlaw House support group and has written to MSPs on the group’s behalf, pleading for capacity to be increased.
He said: “Our kids have really complex needs, they can’t do anything for themselves.
“We’re working 24 hours a day caring for the kids and we really do need the break.
“We are all exhausted.”
Capacity was recently increased from two beds to three following restrictions easing, but before lockdown it had five beds.
NHS Tayside is looking into re-introducing a fourth bed but said this requires a risk assessment.
Allan added: “We’ve had to fight to get two beds up to three beds and they said they can’t go any further because there’s only three bathrooms.
“These kids share the same plinth [for changing] at school, there’s hundreds of kids there, how could you not just clean the bathroom like they do at school?”
Exhaustion
In 2018, the same parent support group successfully campaigned against cuts to beds and staff at Glenlaw house.
But now the pressures of lockdown have affected the health of carers.
“I had a stroke in late March just through exhaustion,” said Allan.
“Loneliness is a big factor in a caring role and so is exhaustion, we’re at the high end of care.
“Our kids have major seizures, day time and night time, so we’re not even getting a good sleep at night times – I average about four or five hours of sleep everyday.”
Along with respite issues, Allan feels that children with complex needs are left at a disadvantage as activities they took part in before the pandemic are still not permitted.
‘We’re the ones left suffering’
Allan said: “We accepted during the start of the pandemic that these things would have to be delayed until they could work out how to deal with the pandemic.
“But everything else seems to be opening and we’re the ones left suffering at the end of the day not being able to do anything with our kids.
“Shielding and social distancing, it’s not new to us – we do this every flu season because the flu is as dangerous as Covid to our kids.
“The information we keep getting is contradictory.
“We need answers to this, why there’s so much conflicting information coming out, why we’ve been hit the hardest.”
‘Appropriate physical distancing’
NHS Tayside, which runs Glenlaw House, said the environment and staffing of the care home must be carefully risk assessed in relation to the needs and safety of the children who attend.
A spokesperson for NHS Tayside said: “Glenlaw House is classed as an inpatient unit and therefore is following national inpatient guidance for operating during the Covid-19 pandemic.
“When Glenlaw House reopened for respite care after restrictions eased, there were initially two beds available.
“Following further discussions with NHS Tayside’s infection prevention and control team, this was increased to three beds, which allows each child to have their own bedroom and bathroom and allows for appropriate physical distancing to take place in communal areas.
“We are currently in discussion with our infection prevention and control team about opening a fourth bed, however this will require ongoing risk assessment and will be dependent on the individual healthcare needs of the children and young people.
“Staff from Glenlaw House have recently met with the parents group to advise them of the current situation in the unit and would welcome discussions around any further concerns they may have.”
The Scottish Government declined to comment but referred to the current coronavirus guidelines.
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