Tracey Gilliland says she and her husband, whose adult sons require round the clock care seven days a week, have pleaded with the Trust to restore their full care package.
While some services have been restored, Tracey says not knowing when they will be receiving the full service, plus the lack of clarity on respite care, has left the family in limbo.
Both Tracey and her husband work so having day care is essential to allow them to keep their jobs. Also they haven’t had a proper break in two-and-a-half years.
Their normal five days day care with five days transport and respite care was withdrawn suddenly when the pandemic hit but has yet to be fully restored.
Prior to the pandemic Tracey and her husband used to have respite dates organised six months in advance. This was essential when booking a holiday. However, currently the few options for respite which have been offered were at short notice
Tracey said for the past 30 years, respite has been the only time she gets a full night’s sleep.
The couple have been caring for their boys, who need clothed, washed and fed day and night, for 30 years and have had to fight for every bit of help they get.
This help is essential, not just for the boys, but for the mental wellbeing of their parents who need a break from constant caring.
The couple are not asking for anything more than what they were entitled to prior to the pandemic and all they want is the full support of the Trust.
However Tracey feels the Trust has let her down with calls going unanswered and the support she requires not being fullfilled.
A spokesperson for the Southern Health and Social Care Trust said: “The Trust fully recognises the impact the pandemic has had on our service users and carers. The past few years have been hugely challenging for our staff and services as we have managed the pandemic and we know particularly stressful and frustrating for carers with the reduction of some services.
“The Trust continues to work towards achieving pre pandemic service provision for both day care and short breaks. We continue to work with independent sector providers to increase short breaks capacity. Currently, Day Care in Disability services continues to operate Monday to Friday at reduced capacity but we are continuing to increase attendances in our day care facilities.
“Trust Senior managers have offered to meet with Mrs Gilliland on several occasions recently to discuss her concerns about day and respite care. Another meeting date has been offered for later this month. We also encourage any carer to raise any concerns with their designated Trust key worker.”