YOUNG’ DEMENTIA SUFFERERS LEFT IN LURCH
SALFORD `YOUNG’ DEMENTIA SUFFERERS LEFT IN LURCH BY AUTHORITIES
|Star date: 10th October 2016 |
WHILE £MILLIONS POURED INTO DEMENTIA, OTHERS OUT IN COLD
"We're left with nowhere to go, no roads to turn down and it's a lonely, lonely place..."
On Saturday night, twenty people went on a Dementia Walk that raised around £200 specifically towards research at Salford University for people suffering with Moderate to Mild Cognitive Impairment (MCI), or `very young dementia' as it's known.
While £millions are being poured into the treatment of older people's dementia, and rightly so, MCI sufferers are being completely ignored, says the Walk's organiser and MCI sufferer, Gill Whiteley... "They just tell you `It's your fault' and leave you high and dry" she says.
Full details here...
Today is World Mental Health Day and last Saturday night twenty brave souls went on a three hour Dementia Walk through Weaste Cemetery to raise around £200 for research into the illness – even though £millions are being poured into the
Salford Memory Assessment and Treatment Service, or MATS.
So why was it necessary on a cold, dark night to have a torch-lit procession to raise what is peanuts against the total budget in the city for dementia care? Indeed, health money is the only funding in town at the moment...
"I have to question where that money has gone because they're not making the process from diagnosis to treatment any easier" insists Gill Whiteley, who organised the walk
"Where is that money going?" she asks "Is it painting fences, paying for new lighting? It's not going on the patients that need it."
Indeed, a Salford Clinical Commissioning Group (CCG) report notes that some MATS money is being spent on "refurbishment of premises", as well as `post-diagnostic support offered to patients and carers, relationships with GPs and other services...'
It matters to Gill because she herself has Moderate to Mild Cognitive Impairment, or MCI, which is a condition involving problems with day-to-day memory amongst other things.
"We class it as very young dementia" she explains "I was diagnosed with it 18 months ago and there's no help given or offered, nor advice. We're left with nowhere to go, no roads to turn down and it's a lonely, lonely place.
"They come to your house, they do the tests, you go through all the rigmarole, MRIs and all the scans, then they come and tell you `It's only MCI, it's not really dementia and it's all your own fault because it's down to your lifestyle choices'" she adds "I question that. Sometimes you're a victim of circumstance, sometimes you're beaten around the head; how can you be responsible for that and how can they say it's your lifestyle choice? It isn't.
"It's something that's affected you, that you were unaware of" she says "But they just leave you high and dry with `It's your own fault' and walk away, and don't contact you ever, ever again."
It's something that was picked up in the last Quality Care Commission (QCC) report on Salford's care. While praising changes and improvements to dementia care services, the report notes that "We were told it was difficult obtaining assessments and the right assessment for people with lower level needs. The result could be people disengaging or not getting the support they needed to avoid crisis..."
Gill is fighting to change that. She herself knows of 62 women in Salford, aged fifty to sixty years old, who have MCI and have, she says, had no support.
"They don't know what to do, the doctors just ply them with anti-depressants because they are depressed because they are not getting the help, and that masks further development of either dementia or Alzheimers" she explains.
Through her endeavours, Gill is going to be a guinea pig at the Salford Institute for Dementia at Salford University, while also becoming an associate of the unit.
"It's a little known cause in Salford that doesn't get a lot of publicity, so all the money raised today will go to them, specific for Salford – for Moderate to Mild Cognitive Impairment research" she says "This is the second year we've done the Walk and it's worth it for the cause..."
Amongst those down at Weaste Cemetery on Saturday was Gill's daughter, Tonie, who was looking after cars and guiding people along the route... "I'm here to support my mum" she said "It's a brilliant cause because it's looking to find a cure for dementia, and every little donation helps."
The QCC report on Salford's health care notes that "the prevalence of...dementia...is significantly higher than the England average". As funding is thrown, quite rightly, at severe dementia care, MCI seems to have lost out completely. Hopefully attitudes will change...
* The Salford Star contacted the Salford Memory Assessment and Treatment Service for a response but no-one returned our call
To donate to Salford University's Institute for Dementia giving page – click here
For more information see Gills Walk for Dementia Facebook event page - click here