Stacie Lewis’ experience raising hell…
... erm, raising a little girl with severe brain damage. The blog began in 2009 when May was 4 1/2 months old.
Currently, May enjoys bouncing and the dulcet tones of dub step.
Click on May's photo here to link to her best bits, including videos!
Email her or her mama at: firstname.lastname@example.org
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May in the news!
- March 19, 2011 // 56 Comments
- June 21, 2013 // 45 Comments
- November 25, 2011 // 37 Comments
- November 14, 2009 // 36 Comments
- July 18, 2012 // 28 Comments
- November 6, 2012 // 27 Comments
- April 18, 2014 // 0 Comments
- April 16, 2014 // 3 Comments
- April 15, 2014 // 3 Comments
- April 7, 2014 // 5 Comments
- March 31, 2014 // 3 Comments
- By Mama Lewis, April 17, 2014
- By Mama Lewis, April 17, 2014
- By Irishmama7, April 17, 2014
- By Madgew, April 17, 2014
- By Aunt Carrie, April 16, 2014
Don’t understand a term?Click here: TO SEE MY GLOSSARY!
Posts about May on BabyCenter!
A bit of praise but is it art? CP Info Dealing with Doctors Fun with May Giveaway Hip surgery Hot Air Ieuan Kids all access... London Leukemia Life with a CP Baby Lycra (Supergirl) Suit May vs The Hospital May's History Medical Records Music Not special needs. More like NEED IT. Nursery Physio Potty Training Preschool Seizures Sleep So-called experts Success! This week I'm... Transportation Visual Impairment
What is happening to the NHS?
The Coalition government is at it again. They are pulling the rug out from under the Disability Living Allowance. Ripping the Mobility element from many needy people. Making disabled families who are also very poor, poorer. If that wasn’t enough to make a person want to charge Downing Street and literally disable David Cameron, now they are pressing through their National Health Service reforms.
Pressing ahead despite most of the NHS begging them not to. Despite most of the professional bodies associated with the NHS criticizing it. Despite patient groups and people like me, on the frontlines of this battle – and I could go on with war rhetoric. It is an apocalyptic change to the NHS.
If you are anything like me, the reforms sound absurd and complicated and not thrashed out in the least. I can’t work out much details at all, while at the same time, all I hear from the government are words like change, reform and competition. What of the details? How do they plan on achieving these, and is it change for good or just for its own sake?
So, let’s put it in terms we’ll understand. How will the reforms affect May?
Recap on May’s needs:
Equipment – lycra suiting, bath seat, supportive seating for eating and play, standing frame
Hospital visits – neurology, vision, seizures
Community help – physio, OT, visual therapy, Social Services OT
It is clear that May is EXPENSIVE. She costs serious money. And, no doubt the government would like to cut down on the tens of thousands of pounds they spend on her yearly. (Her lycra supergirl suit for example – £500/3x a year).
The government wants to remove the Primary Care Trusts that manage the money and make decisions for an area. In their place, they want GPs to manage their own money and contract out as they see fit. This is all about improving the system so it meets local demands.
What this means is that GPs will not manage their own money. They will contract that out to private firms. Of course they will! They are GPs not managers. They want to help patients – as they should. So, part of the money will already go to private companies who will profit off the NHS in exchange for managing the funds of GPs.
By focusing on local concerns – let’s say a certain area has more cases of lung cancer, for example – individual, complex cases like May could pay the price. Like I said, May is expensive. No one is going to profit off her. They are going to lose money big time. Will this mean that GPs encourage us to find a new practice? Or, that they simply say it is too difficult to source May’s next lycra suit? I’m already having these kind of conversations and it is only going to get worse.
The Royal College of General Practitioners said it was “concerned that some of the types of choice outlined in the government’s proposals run a risk of destabilising the NHS and causing long-term harm to patient outcomes, particularly in cases of children with disabilities, those with multiple comorbidities and the frail and elderly.”(wikipedia)
Like most policies spun to appear better for patients, the government is short-sighted. They are so desperate to save money now – and make money for private companies AKA “opening up competition” – they forget that they are creating a deficit for themselves later. When May, and children like her, can’t eat independently, sit independently or any number of other basic skills, that will be lifetime of care and very expensive to provide. Help them now, invest in them now and they will save themselves a lot of money.
The government may win – and in doing so perhaps clear their deficit – but only by creating a Frankenstein system of health that will be an expensive bill of an entirely different beast.
What do you think of the NHS reforms?
Interested in hearing more? Use the Twitter hashtag #iamspartacus to learn what the health professionals in the NHS are saying about the reforms.