'There's nothing in Salford for our kids..." Michelle
It's Wednesday morning at the Old Nag's Head pub on Liverpool Road in Irlam, and a gaggle of people sit chatting and laughing. A lot. But behind the smiles and banter are some horrendous stories of being left to cope in isolation with severely challenging children and adults; with almost no support from the authorities that have a battery of 'strategies' and 'exemplar models' recognising "the highly complex and personal journeys that carers experience at an individual level" etc etc...
"I'm a mum of a severely disabled child who's now 14 and has a very rare condition, and just felt so frustrated at the lack of services, the lack of support for parents who are carers, and the lack of nothing being available for our children" says Michelle Vincent, who started this group, called Together@M44 two years ago.
"I should have a big care package in place but none of it is being met" she adds "I feel like no-one is listening and carers are literally at breaking point. I just thought that if I felt like that, how many other people felt like that? Being a full time carer is very, very isolating but now we've got a fantastic group and everyone is there for each other and supports each other."
Together@M44 meets every Wednesday morning between 11am and 1pm at the pub and has guest professionals in from places like the Citizens Advice Bureau and Salford Health Improvement Team which help with everything from keeping fit to applying for a Carer's Card, a Carer's Grant, while Michelle signposts people to other services, pulls in grants for training and lots more. But, as everyone we spoke to confirmed, it's the basic support packages that are lacking.
Emma Windsor has two children with special needs..."I don't get any support because my boys don't hit that high threshold" she says "It's rubbish. The boys get help at school but you're left to deal with it on your own at home. It's hard, and there's not enough support out there for carers..."
Yet, the latest report this month from Greater Manchester Mayor, Andy Burnham, has a great big green traffic light on the carer's section, indicating everything is great...
"The programme (working with carers and locality representatives), will have utilised the GM Exemplar Model for Carer Services to develop a 10 locality Carers Action Plan, to extend the support to carers and to ensure a consistently available support offer for all carers across GM" it happily states.
Today, people are almost queuing up to tell how this is not working in reality...a 70 year old lady trying to deal with a challenging adult with no social work support, a young parent furious at the safeguarding failures of a local school in relation to her son who has learning difficulties...it goes on and on.
Indeed, two local councillors - Lewis Nelson and Darren Goulden - have recently attended the group and had 13 points and questions fired at them regarding Salford City Council failures, including...
'Existing care packages are not being met, many times young people have been left without care and their carers without respite. Are the council aware that many families are being let down and the care not met?'
'More input is needed from professional bodies such as CAMHS and the Social services. Many of our families have waited 2+ years to access these services whilst others have had no input whatsoever and struggle alone. This is leaving carers mentally and physically exhausted and looking at giving their children up due to lack of support.'
'Carers are screaming out for more help and support yet it is falling on deaf ears... Carers are struggling and burning out. We are only human and have our limits. Something really needs to change...'
Other points included the lack of disabled toilet provision in the city, the lack of free venues to put on regular holiday activities for disabled children...there's not even enough nappies given out for incontinent people (three over 24 hours!), while carers receive just £66.15 per week, or £1.89 per hour for a 35 hour week...or with no help 39p per hour for 168 hours per week...
"Carers like us are saving the council a lot of money and we unfortunately see no benefit from our roles..." the missive concludes. It's all a damning indictment of Andy Burnham and Salford Mayor Paul Dennett, and their failing 'strategies' and 'exemplar models'.
So this group of carers meet to support each other. Two have even come from Broughton on the bus, including Emma... "Just look at how far we've had to come to get support" she says "There's one group locally that's only just getting on its feet and doesn't offer as much as this group. Here, I meet up with people and talk and have a laugh. It's helped me cope because isolation is a big problem. People just don't understand your situation."
It's a point underlined by Michelle..."We love our kids but it's really hard work. Carers' physical and mental health is suffering due to lack of help, services and support. Carers put their own needs to one side, as the needs of their children always have to come first. Louise who comes here has asked for just six hours of care but keeps getting knocked back, it's ridiculous, the pressure is overwhelming and no-one is listening."
At the Together@M44 group, it's almost an oasis... "They come here and can have a right laugh, some weeks we don't even talk about our kids or what's going on and it's nice to have adult conversation and forget you're a carer" she adds.
Kate Ryan has three children, one with Down Syndrome and one with type one diabetes. Her partner works either days or evenings... "I feel like I'm a single parent, and if I take the kids out by myself it's so hard" she says "I never have time to go out with my friends, but here it's just time away from the normal chores with some adult conversation.
"All we do is laugh, have a coffee and people are invited in for us to ask questions or they run courses on useful things" she adds "And if any of us need help there's always someone in the same boat to talk to."
The group is open to any carers, not just parents of disabled children, and Michelle explains that her passion is to bring families together and give the children some fun. The group gets no funding, although the local Rotary Group has donated some cash to do a Treasure Hunt in the local park over the summer, followed by a Halloween and Christmas Party.
Volunteer Michelle and her committee have also run a Race Night and Mad Hatter's Tea Party to raise money for treats, and are hoping to do a day trip to Gulliver's World this summer... "We're just trying to get them some 'out' time, some fun time because there's nothing in Salford for our kids" she explains.
Indeed, today, everyone is cheering because a local businessman has donated £25 per month to help the group continue. It's another shocking indictment of Salford Council, with its £19million for an RHS garden in Worsley, and more £millions on fancy office blocks. Here the carer-friendly 'strategies' and glossy, smiley brochures mean nothing as reality bites.
"People are just not listening and carers are literally at breaking point" Michelle repeats "Some of the messages I get..."
She tails off. And tries to forget the hardships as today is about fun and laughter, and help, of course...
Together@M44 meets at the Old Nag's Head pub on Liverpool Road, Irlam M44 6FF every Wednesday 11am-1pm.
Everyone is welcome to drop in or email Togetheratm44@gmail.com for further details.
For more information see the Facebook group Together@M44 – click here
The group is also looking for more sponsorship, either in the form of finance or donations of raffle prizes to help with fundraising (contact above).
To read the Exemplar Model for Carer Support in Greater Manchester – click here
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