Thursday, 3 September 2015
Wednesday, 2 September 2015
It was June 4th when we heard that the consultant looking into my balance issues had formerly asked for a second opinion, into my diagnosis of Lewy Body Dementia.
After hearing nothing we decided to contact the hospital concerned last week, to see if I was getting the second opinion or not.
They told us that they had not received the original letter from the consultant, so a friend of ours sent a second copy by fax, and we waited to see what would happen.
This afternoon we received a telephone call with an appointment, to see a neurologist involved in Lewy Body Dementia.
The strange thing is that this appointment is for the same day, that I go back to see the balance consultant, but as its in the morning, I can still get back home to see the other consultant.
I really do not think we will get an answer on my diagnosis at this appointment, but at least it's a step forward after all of this time, and we may get some answers.
What ever happens now I am starting to feel a little more positive, that someone will get to the bottom of this problem
Another Fatal Brain Disease May Come from the Spread of 'Prion' Proteins
by Rachael Rettner, Senior Writer | August 31, 2015 05:04pm ET
The findings may set the stage for new treatments for MSA, a progressive disorder that causes symptoms similar to Parkinson's disease and has no cure.
What's more, the researchers say that the prion they believe causes MSA, called alpha-synuclein, is the first new prion to be discovered in half a century. Prions are infectious proteins that fold abnormally and trigger the misfolding of other, similar proteins. Eventually, the buildup of misfolded proteins can cause lesions to form in the , leading to disease.
"Based on these findings, we conclude that MSA is a prion disorder, and that alpha-synuclein is the first new bona fide prion to be discovered, to our knowledge, in the last 50 years," the researchers, from the University of California, San Francisco, wrote in the Aug. 31 issue of the journal Proceedings of the National Academy of Sciences.
Because prion diseases can be transmitted through certain types of contact with infected tissue, the findings suggest a potential concern for doctors and researchers who work with tissue from MSA patients, the researchers said. [10 Things You Didn't Know About the Brain]
A new prion
Patients with MSA can experience tremors, slowness in their movements, impaired speech and problems with coordination. The condition can lead to death within five to 10 years. The disease is rare: About three out of 100,000 Americans over age 50 are diagnosed with MSA yearly. Studies show that patients have a buildup of the alpha-synuclein protein in certain brain cells.
In the new study, the researchers took brain tissue from 14 patients with MSA, and injected that material into mice that had been genetically engineered to have a mutation in the alpha-synuclein gene. The researchers found that the injections caused the mice to develop progressive disease within about four months, suggesting that the scientists had been able to "transmit" MSA to the mice.
"We conclude that MSA is a transmissible human neurodegenerative disease caused by alpha-synuclein prions," the researchers said.
Other prion disorders, such as CJD, can be transmitted under rare circumstances, for example, when instruments used during brain surgery are cleaned without using certain methods. This is because traditional disinfection methods don't work to get rid of prions.
Although it's not clear if MSA could also be transmitted this way, the researchers said that doctors and scientists should adopt more-stringent safety protocols when working with tissue from MSA patients, and even other similar diseases, such as Parkinson's.
"We do not yet know whether or not MSA prions exhibit the same ability to stick to surgical instruments," like prions from CJD patients do, said study researcher Amanda Woerman, a postdoctoral fellow at the University of California, San Francisco. "Until we have those answers, we encourage a cautious approach to sterilizing instruments used on MSA patients to minimize potential public concerns."
Caution on findings
However, some experts say that, by some definitions, alpha-synuclein is not a prion, and that there is no evidence that MSA spreads in the way that other prion diseases do.
Dr. Valerie Sim, of the Centre for Prions and Protein Folding Diseases at the University of Alberta in Canada, said that the traditional definition of a prion is an infectious protein that can transmit disease to another host. But based on the new study, alpha-synuclein does not meet this definition, because brain tissue from MSA patients did not cause disease in normal mice. Rather, brain tissue from MSA patients caused disease only in mice that were genetically engineered to have a mutant alpha-synuclein protein. (In contrast, "true" prions can cause disease in normal mice, Sim said.)
"The problem with branding something a prion is it induces fear, because people have heard of it as a scary transmissible disease," Sim said. But the new study, "if anything, shows [MSA] is not easily transmissible," she said.
Still, the new findings are important to consider in research and treatment of MSA, she said. But "we can't start a panic, because there's no actual evidence that human-to-human MSA transmission happens or can happen," Sim said.
Live Science contributor Christoper Wanjek contributed reporting to this story
Tuesday, 1 September 2015
Bosses blame Living Wage as dementia care homes face uncertain future over funding fears
Three specialist dementia nursing homes in South Tyneside are facing an uncertain future after funding fears sparked a financial review at a national care operator.
Four Seasons Health Care, which runs The Lodge Residential Care Home and Chichester Court Care Home, South Shields, and Meadows Care Home, in Boldon, is reviewing its operations as it faces a huge increase in costs over plans to boost the national living wage next year
All three care homes run by Four Seasons in the borough provide vital dementia care.
The fees that local authorities pay to homes to provide care support for residents have also fallen by five per cent in the last five years - putting a further strain on an operator which has lost £25m in the three months to June.
Bosses at Four Seasons, which looks after 20,000 patients at 450 nursing homes across the country, have already voiced fears over the impact of a national living wage on its services.
They joined Bupa UK, HC-One, Care UK and Barchester, in penning a letter to Chancellor George Osborne warning the extra costs could lead to home closures.
About 40 per cent of workers at care homes currently earn the minimum wage.
In his latest budget, Chancellor George Osborne announced firms will be required to pay a minimum of £9 an hour by 2020.
The first increase will be introduced in April 2016, however, when workers will receive £7.20 an hour.That compares favourably to the current £6.50 an hour minimum wage for over 21s.
Care homes are calling for funding support from the Government to help them meet the costs of mass wage increases.
Mr Osborne has agreed to consider their concerns, but a review into all operations has been launched by Four Seasons in order to discuss possible options if the funding support is not forthcoming, which colud include selling off or even closing sites.
Just 85 per cent of rooms at Four Seasons care homes are currently occupied - while the firm is also trying to get to grips with a £500m debt.
The news is a fresh blow for the care home sector in South Tyneside.
Oakdale Lodge Care Home, in Stanhope Road, South Shields, is to close this month after its operators Orchard Care Homes announced it ‘had no future’ as a care home.
Over 20 residents - many suffering with dementia - have had to find new homes throughout the borough.
A spokesman for Four Seasons Health Care declined to comment.
‘Unintended consequences’ of plan
Care England, a body representing independent care providers, wrote to Chancellor of the Exchequer, George Osborne (pictured right), to warm of the ‘unitended consequences’ of the national living wage strategy.
Martin Green, Chief Executive of Care England, said: “I am writing to express my support for your decision to develop a national living wage, but also to warn you of some of the unintended consequences this might have for the care sector and the NHS.
Care providers are receiving totally inadequate levels of funding from local authorities, in some areas this amounts to as little as £2.80 per hour, for residential care to some of the most vulnerable older people.
In recent years, the sector has received either below inflation rate increases, or no increase at all, and it is not possible to deliver much more, unless we have a proper funding settlement from the local authorities.
Your recent announcement of wage increases came on top of auto-enrolment and increases in regulatory fees, all of which have put enormous burdens on the care sector.
If we are not properly funded we will see a reduction in care providers and this will have a significant impact on the NHS, and the money that you have promised them, will not be adequate to meet the demand.
We understand that you are committed to deficit reduction, and as businesses we applaud this.
“However, we do
not believe that in ignoring social care, whilst protecting health, you are getting the best value for the taxpayers money.”
I personally think it was very wrong to close local care homes which were run by local councils.
I say this because these care homes were not run for profit, or shareholders, they were run for those who needed the care.
These days everyone seems to want to make a profit for the shareholders, rather than ploughing it back into the service.
To me it's wrong when the elderly and those with dementia etc, have to pay for care when they have worked all of their lives and have paid their taxes.
Not just that, but many of the staff in care homes are not trained to look after people with illnesses like dementia.
They get a basic wage and little training and that is very wrong.
It's a basic right to be looked after by trained staff, who can treat those with the illness with the care, respect and dignity that everyone else takes as a right these days. But to do this you really have to pay these staff a good wage and has to be more that the basic living wage.
I do feel that the government should step in now and show some guts, to ensure that the care system does not fail now.