Scleroderma News & Updates

Below  news updates are some very useful links that may help anyone who suffers with autoimmune disorders/Scleroderma, Lupus, Chronic Fatigue & other degenerative diseases. 

November 2016

Living with any chronic illness is not easy and we often hear the expression " but you don't look sick"?

So when I read The Spoon Theory, (link below) I could not have written it better myself. This explains exactly how we have to adjust to our ill-fated lives and how others have no idea of the daily stuggle that we endure.

My six week post operative appointment with my surgeon was very positive, it seems that we were all shocked that there were no compications following surgery. It was a gamble worth taking afterall. Now I'm being weaned off morphine and I wouldn't wish this cold turkey on my worst enemy; or would I? Would I?????

The Spoon Theory

The Reality of Profound Scleroderma Fatigue

October 2016

Newsletter Benefits and Work  DWP announce some claimants will be spared ESA wok capability assessments

 

Hallelujah! Praise the lord!

At last the DWP have announced that  it is not cost effective to continue to assess claimants who have been diagnosed with progressive, degenerative diseases. I have written on this website that the clue is in the title, what a shame the DWP didn't read my website. I was initially given DLA benefit indefinitely for this very reason. It's really not rocket science it is?

Again, I write that at no point has my health ever improved and I could never have written to the DWP to state a change in my circumstances. Exept to write that it had worsened and will continue to do so until my last breath.

Last month I finally had my long awaited surgery and I'm doing well in recovery.  Sadly, I will always have the same issues as before and other joints have now been damaged through having to wait so long. On the positive side, it's great to be rid of the excrutiating pain, now I need to come off morphine but cold turkey isn't nice.

June 2016

Newsletter Benefits and Work  DWP still trying to cover up ignoring pledge to coronor.

 

Director Ken Loach denounced the British government’s “conscious cruelty” towards the poor Friday after his film about the poverty and humiliation inflicted upon them by welfare cuts had critics at the Cannes film festival in tears.

 

May 2016

In February 2015 I lost my Mum after a tragic and unexplained fall that happened while she was staying with my sister, Mum had been in her care for just 36 hours.  She never recovered from this and I will always preportion blame to my sister for her negligence while caring for her.  Mum had been under our care and had lived happily with us for six years, after coming out of hospital following this accident,  we kept her at home and gave end of life care as we knew that she had never wanted to go in to a nursing home. Neither my brother or sister had any part in caring for Mum, it was sometimes too much to even come to visit her. We had only needed  help and asked for it when our puppies were due but even though we gave specific dates, a holiday was always conveniently booked to avoid looking after Mum for us. With some help from adult social care who supported us over a six year period, we managed on our own without any family intervention. Unfortunately for Mum, her immediate family failed to prioritise where she was concerned and our requests for help  fell on deaf ears

 While Mum was recovering in hospital and seriously ill following emergency surgery, my sister was more concerned about selling our parents  house,  it certainly wasn't appropriate to discuss this at Mum's bedside. Unsurprisingly both turned in to vultures once she had passsed away.

In September 2015, Alan also lost his Father quite suddenly.

While sorting out the estates of our parents, both have been desolved this month, we have seen immense greed and have witnessed some extremely devious and calculated if not illegal actions by members of our own families, in their quest to deny us both of our rightful proportion of inheritance. They will have to live with what they have done or tried to do,  there has been so much disrespect shown to our parents that it is shameful. Shameful also of those who have gone out of their way to encourage these dubious actions, when they have expressed disgust at being a victim themselves in the recent past. Yet again, people who despise each other came together in their quest to cheat and deceive us both.

 Both Alan and I have  a clear conscience and we are both happy in the knowlege that we always did the best we could for our dearly loved parents. I had many opportunities to sway Mum  to leave everything to me, but had I have done this, I couldn't have lived with myself afterwards. Children born to two parents should have equal shares in their estate. Ironically, those who didn't play any part in caring for Mum, did take a bigger share than me as they benefitted from rental income (untaxed) from Mum's house. I was the only one who took no income, afterall, it wasn't our money, it belonged to my Mother.

At the moment, I can only tell a fraction of the story but we can at least sleep at night.

Once again, I am a very poor judge of character.  If we cannot trust our own families, we cannot trust anyone, it's just very sad that we don't realise the betrayal until it is too late. It really is incredible what people will do for money, even those who don't need it!  The phrase "it's not what people say but what they do" has never been more appropriate.

 

April 2016

Tax evasion on a huge scale has made the headlines once again. This government is too keen to cut disablement benefits, harrass benefit claimants and cause public furore over the 1% of benefit cheats. Compare this to fraud by the rich, billions in unpaid tax that could make a huge impact on our economy.  Their £500 million cost of getting people off sick benefit would be better spent by changing the current laws to make  offshore deposits illegal. David Cameron needs to act soon. Instead of persecuting the poor, penalise the rich and force them to pay their due tax the same as every person on PAYE and lead by example.

Someone recently shared the link of my court case in an act of nastiness with the full knowledge of my obvious disability, and my requirement of wheelchair assistance at airports.  Pretty rich considering that they too have  lived a good life on hundreds of thousands of undeclared tax over the last twenty years. A case of teapot and black spring to mind! I am no longer surprised at the depths to which people will sink where money is concerned.

 

PIP/ESA support group  Assessment firghback support

 

News letter April 2016
Secret Observations Used To Refuse PIP Plus Claimant Deaths Reviews Victory

 

Wonderful wedding gift from our government -  The Canary

 

Newsletter February 2016     LATEST NEWS ON DWP, ATOS, CAPITA, MAXIMUS

 

Snooping and sale of your medical records unless you opt out very soon

 

A GPs’ leader has accused the DWP of snooping on patients.

 

DWP U-turn on benefit cap for carers

 

"The DWP has been forced to scrap the benefits cap for people who get carer’s allowance after being defeated in the courts two months ago."

 

December 2015 newsletter Benefits & Work

Quote from November 6th Benefits & Work

"A senior executive at the company used by the Government to oversee disability benefits has attempted to amend his career history amid anger from disability campaigners that the welfare state is now being run by private sector “henchmen”.

Professor Michael O’Donnell, the former medical director of Atos, now plays a senior role in the American company Maximus, which has won a £500m Government contract to decide whether disabled people are able to return to work. His previous company walked away from the contract, which was supposed to end in 2015.

Despite Government promises of a fresh start, Professor O’Donnell now works as the medical director of Health Management Limited (HML) which is a subsidiary of Maximus. The company claims he will not be directly involved in the delivery of the new contract, but all reference to Professor O’Donnell’s previous role at Atos was removed from his career history on the business networking site LinkedIn this week - which MPs and campaigners fear is an effort to conceal the close relationship between the two organisations"

 

£500million of tax payers money to a private company to reduce  benefits????

 

Raynaud's & Scleroderma Society 

 

Scleroderma Foundation Support group 

 

Fibromyalgia 

 

Lupus UK 

The Spoon Theory

 

Amanda's story

 

Chanel's story 

 

Help Gabby 

 

Lisa's story