Watch as parents with disabled children join protest march against the closure of respite care at Sunderland's Grace House

Around 20 families with disabled children joined forces to take part in a protest march past City Hall to vent their anger over the imminent closure of respite care operating out of Grace House.

Grace House currently provides an opportunity for both disabled children, many with severe and complex needs, and their families to benefit from weekend and overnight respite breaks at their eight bedroom facility.

The facility is located on the ground floor of Grace House and is provided in partnership with Sunderland Care and Support (SCAS), who provide the care, which is funded by Together for Children Sunderland (TfC).

However, last month parents received a letter from TfC informing them that this facility will cease to operate at Grace House from the end of November.

In a desperate attempt to “get people back around the negotiating table” parents have set up the Give us a Break campaign group.

One parent taking part was Stacey Smith whose daughter, Ellie-Mai Grant, 14, is wheelchair bound with multiple conditions including the neurological disorder lissencephaly, which limits her mobility, epilepsy and psoriasis.

Stacey, 32, from Thorney Close, said: “The alternatives currently being offered simply wouldn’t work for Ellie and she can’t go to relatives as they don’t have all the specialist equipment Ellie needs.

“Grace House allows Ellie to get a little bit of independence and socialising with people of her own age and so not being able to go will have a really negative impact on her emotional wellbeing.

“It’s a lifeline for me. It’s the only break I get and allows me to spend some quality time with my little boy who is six.

“Ellie needs care 24/7. I’m not just her mother, I am also her nurse. Don’t throw our children under the bus - this isn’t a want, it’s a need.

“My message to Together For Children and Grace House is to get back around the negotiating table.”

It’s a sentiment shared by Laura Grainger whose son Brendan, 14, is non verbal autistic and also has Lowe syndrome which affects his eyes, nervous system and kidney function and results in him having to use a wheelchair.

His brother Lucas, six, suffers from the same condition and is currently on the waiting list for respite care at Grace House.

Laura, 38, said: “Respite at Grace House provides a break for both him and us and if it ceases to operate it will have a massive impact. 

“He loves going there and gets really excited.

“Going into temporary foster care or having personal cover assistants simply wouldn’t work for Brendan. 

“All I ask is to save our respite. We don’t have the option of babysitters like other parents and so it’s all we have got.”

The campaign is being backed by former Sunderland City councillor Pam Mann, who was on the march with her disabled daughter Tara and has previously campaigned for respite care for families in a similar position.   

Pam said: “We are taking part in this protest march today to bring attention to the city, the Council and TfC just how difficult it will be for families to survive without this respite care service.

“The situation these families will be left in will be catastrophic and unacceptable.”

A letter sent from TfC to parents informing them of the ending of respite care at Grace House also cited a change in the rental rate as the reason behind the decision. 

The letter, which was addressed from TfC Chief executive Jill Colbert said: “We were informed by the charity that they were approached by a company willing to pay a higher commercial rate for the space that is used for the service, which meant that unless we matched the increased rent, and increased costs of utilities driven by the cost of living crisis, we weren’t in a position to stay there.

“We have written to parents and carers to let them know that sadly this arrangement will come to an end at the end of November this year.”

Ms Colbert went on to pledge to find “alternative provision” “including “trying to buy a building which we can modify to fit the range of needs our children”.

However Pam has urged all parties to look to find a solution at Grace House.

She said: “Grace House, the Council and TfC need to get back around the negotiating table to make something happen at Grace House or at least find a suitable alternative before it closes.”

The campaign is also being backed by Barnes Ward councillor, Antony Mullen, who said: “I just feel that parents are being let down and the alternatives being offered are not appropriate. There needs to be something in place to give them that two or three days period of respite.”

After being contacted by the Echo about the march, Sunderland City Council and Together for Children have again stressed they are looking for alternatives and have reluctantly taken the decision due to increased and prohibitive rental costs.

A spokesperson for Sunderland City Council said: "Partners across Sunderland – the City Council, Together for Children and Sunderland Care and Support - are all very aware of these matters and understand how upsetting this news has been.

 "The Grace House charity required us to match the cost and terms of an offer it has had from a third party for the space used in the respite service.

"This was a substantial cost increase and a loss of the soft play area that our children used while having a short break at Grace House.

"While unable to reach an agreement with the charity about the terms it set out for a new lease, we are paying an increased rent for the time we’ve been allowed to stay in the building which comes to an end in November.

"We have always remained open to a continuing conversation about a new agreement.

"We continue to consult and consider new alternatives and proposals."

A spokesperson for Grace House responded: “Grace House was set up to support disabled children, young people, and their families, and like all organisations we adapt to meet the changing needs of those who we help and the social care landscape.

"This has meant on the Grace House journey we have supported the delivery of short breaks in partnership with SCAS.

"However earlier this year we were informed that SCAS would no longer be providing that service.  We are not a part of the planning for the future of that service, but we understand the importance of it for families, and we support their calls for a transition to a new provision to be as smooth as possible.

"Grace House will continue to offer support through a variety of services which include -youth groups, counselling, work experience, therapies and many more. 

"Recently we have met with a number of parents to discuss this change and would continue to encourage those who have been affected by this change to contact us at [email protected] to book a meeting.”