Tuesday 24 December 2013

My first Christmas with my new lungs

Tomorrow will be my first Christmas with my new lungs. I've been feeling very emotional in the run-up because of course at Christmas time, you reflect on the lows as well as the highs of the year. I'm only slowly realising quite how ill I was while waiting for transplant. Having to be so frank about my mortality is something that I know will change my outlook on life for the rest of the time I have left on this earth.

And of course I am thinking a lot of those that didn't make it. My wonderful friends that I found via twitter who were going through the same things as me, but unlike me weren't able to get their transplants in time. I can't imagine how this week will feel for their families, as all around people are full of joy while they are full of sorrow. But each person I know who died, lived their life on fast-forward - filling it full of achievements, thoughtfulness and love and it serves as a reminder to me, that however long my new lungs last, that life will always remain purposeful if it can be lived in a similar manner.

And then there is my donor. Only in the last month or so have I felt mentally and physically strong enough following my transplant to truly realise everything my donor has given to me. She was a woman who died young, and yet even in her short life she made the phenomenally generous decision to help a stranger live if the worst was to happen to her. I only hope that as her family face this Christmas without her that they have received some comfort knowing that their daughter saved the lives of others. In my eyes she'll always be an extraordinary woman.

In the last month I've often found my eyes filling with tears when the Slade song 'Merry Christmas everyone' comes on the radio - a strange reaction considering it is so jolly. But I think its because of the line:
"Look to the future now, It's only just begun"

My donor has given me back my future and it is the most incredible and joyous of gifts. My gratitude is immeasurable.

If you believe in organ donation and haven't yet signed up then please do. And do tell your family of your wishes. https://www.organdonation.nhs.uk/how_to_become_a_donor/registration/consent.asp

Friday 22 November 2013

Citizen journalists are the main target behind the Tories' archive deletion

This week the Daily Politics show discussed whether the 2015 election will be the year that internet campaigning comes into its own. Moreover, The Independent recently reported that Labour's 2015 campaign will put on emphasis on the internet, as all parties look to emulate Obama's success in 2008 which many credited to his utilisation of the internet.

If the internet really is the new election ground to be fought over, then the Conservative party's decision to delete all content prior to 2010 from both its website and the main internet library is even more authoritarian then first thought.

Rightly so, its been accused of deleting its pre-election promises so that the electorate are less able to hold it to account come 2015. The Guardian reported that the only way to access this information now is to visit the British Library and trawl through archived copies of the Tories' site. It may be possible for a national newspaper to find resource to do this but it is unlikely citizen journalists can manage such a colossal task.

If the internet is to be the medium that chooses the next Prime Minister suddenly it seems a master stroke by the Tories to reduce the information available to bloggers.

As an ex-PR man, Cameron is adept at manipulating the press. He's been accused of refusing live interviews with harder-hitting news sources in favour of pre-recorded pieces or 'easier' interviews on shows such as 'This Morning'. Ian Duncan Smith is a master at spin and has repeatedly misused statistics to promote his own ideology.

But its on twitter and Facebook that these tricks are called out by citizens who take the time to spread the real truth behind sensational, inaccurate or plainly wrong headlines. And it works because citizen journalists are diligent at linking to their sources.

Indeed one of my most read blogs was a piece denouncing the Telegraph's coverage of the scrapping of Disability Living Allowance. I think it was particularly well read because it used the Government's own sources and statistics to refute the misinformation spread by Duncan Smith.

But if I now want to highlight how Cameron consistently misled the public about his intentions towards the NHS or the disabled community I've got to rely on second-hand sources to do so. And I may trust the Guardian but I know not everyone who reads my blog does. That's even more true when it comes to political parties. Labour can highlight all the promises the Tories have broken but it will be harder to drive the message home as we've all become fatigued by the leading parties constantly taking a swing at each other.

In Cameron's own words it is clear why he is trying to limit the information available to citizen journalists and therefore the influence social media can spread. He told the Google Zeitgeist Europe conference in 2006: "You have begun the process of democratising the world's information. By making more information available to more people, you are giving them more power."

Social media is still an unknown entity - which political party will benefit most from it come 2015? That question has certainly got the Tories worried.

Wednesday 13 November 2013

There but for the grace of my donor go I.....

Today Emma Jane Kingston should be celebrating her 21st birthday but she died earlier this summer from Cystic Fibrosis (CF). She needed a lung transplant but, like a staggering one in three CF people on the lung transplant waiting list, she didn't get one in time.

One of the frustrating elements of my illness, Cystic Fibrosis (CF), is that due to cross-infection risks I can never mix with people who also have CF. So as my health worsened last year and I started considering trying for a lung transplant I sought out people on twitter in the same scenario as me. And that’s where I met the indomitable Emma Jane Kingston or, in the world of twitter, @betseybunny.

We were both being assessed for a transplant simultaneously and we met for the first time at Harefield hospital's outpatient department - we both had our first assessment day on January 16th 2013. But whereas I could barely talk about it –hiding the deterioration of my health away from the majority of my friends for most of the six-month assessment process - she tweeted about it to all and sundry. I’d send her private messages on twitter saying I wasn’t ready to talk about it publicly and she’d berate me asking how could I cope with the stress in secret.

I’d say to my husband in private, sounding like every one of my 32 years, that young people talk about their life too openly on the internet. But I’ll concede that perhaps I was the one in the wrong. Using the web, Emma opened people’s eyes to the pain that people with invisible illnesses can suffer. She made people rethink their perceptions about what it is to be seriously ill, as despite her deteriorating lung function, she was outgoing, made the most of life, kissed boys, went to festivals, dyed her hair seemingly every month and did I mention she was absolutely stunning?

But then when she died, and when other online friends of mine have died, how do you grieve? You can tell your friends but it somehow doesn’t seem as serious to them as Emma wasn’t a physical presence in my life, she never popped over for a cup of tea or glass of wine in the sunshine.

Her family will never know the hundreds of people in the UK and around the world that have mourned her death. She may have been only an online presence in my life, but her death has been felt deeply by all those that followed her blog, read her tweets, messaged her on Facebook. So on behalf of all the tweeters who mourned your loss: Emma, you were respected, you were admired, you were loved.

I finally received my double lung transplant on 30th August this year. When I think of Emma, I'm overwhelmed with the thought that there, but for the grace of my donor, go I . Emma spent her last few months trying to raise awareness of organ donation, so please consider signing the donor register: www.organdonation.nhs.uk

                                                            Emma Jane Kingston

Friday 8 November 2013

New rule will leave ESA appellants without ANY income indefinitely

I've been away for a long time - basically being very ill. I'll update you all on my personal travails another time but my first post in over a year will be dedicated to the extraordinary logical brain of Ian Duncan Smith.

He has been lambasted today for the horrendous mess that is Universal Credit - which is over budget, under target, poorly managed, and with no solution in sight on how to get it back on track. But while this central plank of IDS's welfare reform receives all the attention, other smaller, but arguably more costly changes are being introduced with little attention.

On October 28th his department of Work and Pensions introduced a change to the appeal process for Employment and Support allowance, the main disability benefit for those too ill to work. As of last month a claimant who wishes to appeal against a decision that they are not entitled to ESA must first ask the DWP to reconsider the decision before he or she can lodge an official appeal. 

However the DWP has decided during this new 'mandatory reconsideration' stage the claimant will no longer receive ESA income and neither will a time limit be given as to how long this process will take. The reality is that this will leave people without any income whatsoever for an indefinite period of time - its a truly shocking decision given that nearly 40% of appeals are found in the claimant's favour. It is unsurprising that this rule is already the subject of a parliamentary early day motion.

The Government argues that the claimant can claim Job Seekers Allowance (JSA) during this appeal stage but in reality this will be at the discretion of the jobcentre. Today's statistics of sanctions against JSA claimants show that every month 12% of job seekers are referred for sanction. The New Policy Institute clarifies that these sanctions are given if there is a 'labour market doubt', or in their words, "Job Centre Plus may have felt they were not making themselves available for work". It is clear that disabled people will be an easy target for sanctions if they struggle to job hunt while coping with bad health problems. Labour MP, Sheila Gilmore, even documents a case in which her constituent Rose Burgess was told by the DWP she was too well to claim ESA, but told by the Job Centre she was too ill to claim JSA.

This new rule will push disabled people into poverty or into even worse ill health. It won't even save any money as basic rate ESA, currently payable at this assessment rate during an appeal process, is £71.70 and JSA is paid at £71.70. In addition, the concern is that mandatory reconsideration has created a Catch 22 situation - by applying for JSA the fear is that it will be taken as evidence in any ESA appeal that the individual has admitted a capacity to work.

So there we are - IDS's amazing logic shines again - a new rule that saves no money, unless, of course, the idea is to force people off benefit entirely. Instead it just heaps more misery, poverty and persecution on disabled people - anyone would think that's his aim...