'Our views have been ignored by charity running specialist centre'
FAMILIES of children who use the Hop Skip and Jump centre in Kingswood say their views have been "ignored" by the charity running the specialist centre.
Parents are upset that the charity behind the centre for youngsters with disabilities and life-limiting illnesses has moved its focus away from a drop-in service to respite sessions.
Over the past few months they have organised a survey which was completed by 200 families and a petition signed by 1,800 people.
But now they say they feel that the charity – who also met parents on a couple of occasions – never had any intention of taking what they said into account. The proposed changes have been implemented and a new timetable is in place at the Grimsbury Road centre.
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Julian Burr, of Hanham, has a daughter Gemma who has a chromosome abnormality.
He has been involved with a parent representative group trying to work with the charity, which is now resigning.
"We are resigning from our role as liaisons with the charities management staff as there has clearly been no point in the parent group being involved with the charity," he said.
"We're tired of hearing the management staff using the consultation process as evidence of their ability to 'work with the community' and 'consult on their services' while doing nothing of the sort.
"As a group, we are tired of asking questions and never getting the answers."
He said the parents have been promised a final consultation for several months – but now they believe this meeting will never happen.
"They've ignored 1,800 petition signatures from parents and health care professionals, detailed survey data from 200 individuals and their own experience of a very low response to the services they're offering and gone ahead with implementing a service that is going to leave the majority of families who used to use the centre socially isolated," said Mr Burr.
"We started the consultation in the spirit of co-operation and support for the charity with a hope for a bright new way forward for the organisation, and they have approached the same exercise with an intent to predetermine the outcome, ignore any evidence that could possibly deter them from their chosen path and to marginalise our involvement in the charity. We've been promised transparency, investigations, answers and co-operation and we've had nothing at all."
Families have said they prefer for their children to play at the centre together rather than the suggestion that parents and siblings should be in a separate room during sessions.
In the new timetable, there are two drop-in sessions but siblings are not allowed to attend.
The centre is offering a "siblings day" on the first Saturday of every month.
Mr Burr said the centre had been largely empty on most days in the last four months since the charity changed the services offered – a far cry from the more than 80 families which used to come through the doors each day.
Mr Burr is still encouraging parents to fill out surveys about the changes at http://tempcheck. hsjconsultation.info.
Families are also meeting tomorrow at Hanham Community Centre from 11am to get together and discuss the changes.
Trustees for the charity said in a statement to the Evening Post: "Hop Skip and Jump South West is continuing the drop-in service and special sibling days, and is pleased to announce the recent appointment of a registered nurse to extend the day care provision to those with complex needs."