I have a rare bladder condition that I really need to talk about back in 2011 I was diagnosed with Keratinizing Squamous Metaplasia of the bladder it is a rare I was told and leads to Squamous cell carcinoma which is invasive.
So I have had a tumour since April 2018 and quiet some weeks past treatment I have had cystoscopy, biopsy, CT Scans one might think yes plenty of imaging but whilst they confirm a tumour they cannot grade it or at least not willing to tell me
Today I went for what I thought was an MDT Meeting to discuss treatment but was told because I am now doing if not a better term gassing via my penis so they need another CT scan
All the while I am in pain with no adequate painkillers that work I need opioid drugs and not paracetamol based ones that only work for a couple of hours I also need antibiotics again as the urine is strong cloudy and smelly but despite asking they where not forthcoming.
I lost a lot of weight which the specialist nurse picked up on bless her and tired fatigued coping with urinary retention of which the UTI is not helping hence the antibiotics needed.
Is getting cancer treatment really this hard? because from what I have read and believe me put in a lot of research on this since 2011 is a radical cystectomy and urine diversion via Stoma.
Why is it taking so long and why are targets being missed something does not add up
Looks like I will now have to go back to my GP so he can get the lowdown on what is going on but that should not need to be the case .
Sorry after today am feeling pretty low and my wife is in pieces over this, she has been a gem throughout juggling work with my appointments of which their has been many since end of April.
So as it stands another CT Scan on Monday and back to the consultant on Thursday were I hope the MDT discussion and some firm answers will be forthcoming but will refer to GP tomorrow hopefully he can phone them to see what is what
I must admit my patience is wearing thin due to citizens total lack in understanding Jeremy Corbyn’s stance on brexit.
This morning I read the use of the #hashtag and shouts of #WheresCorbyn on the Peoples vote March that is swelling London OK I get it you all want to remain I do to but you have got the leader of the Labour Parties stance totally wrong and it is thus not helping the cause and you will end up with either a damaging hard brexit or a walk away no deal and the Tories back for another term
The EU is Neoliberal so do tell me why would Corbyn a Social Democrat support that, he wants the best for citizens and nation not the best for the Tory Party that will see them avoiding the Anti Tax Avoidance Directive which Corbyn Supports and will help him with his tax plans
Corbyn does not want to leave no more than you or me he has voted against parts of the withdrawal bill that would invade our rights, why would he do that if he wanted to leave? and as for jobs first protecting those rights is key as is investment in citizens and infrastructure
You really need to start thinking instead of riding the wave of #FBPE thinking you are doing some good as Jeremy Corbyn is the real hope and where he can negotiate on his own terms as well as having compassion and empathy and hell we certainly need that to break away from the Hostile Environment that breeds in just about every Govt Department under Mays leadership
She has to go so lets hear #WheresMay as she is your enemy.
As for #WheresCorbyn he is at the Al-Baqa’a refugee camp Jordan where he visited 100,000 refugees where told under Labour the bomb first and ask questions later would end and Labour would recognise the state of Palestine so get off his back.
Dear Prime Minister May,
I write this open letter in good faith and hope it reaches you
I have made it an open letter for the benefit of my followers on social media and the wider public in the hope they can relate and understand how wide spread your Hostile Environment is, I say this because whilst I was shocked at how the Wind-rush Generations have been treated and of which I have every sympathy for them I can absolutely relate to it and totally understand how they feel and what must be going through their minds.
You see their plight could be seen as a mere pin prick in the grand scheme of hostility in general but none the less getting the condemnation it deserves but we must too now take a look at the much bigger picture as this hostile environment is not a reserve for just the wind-rush generation who are in every sense British but extends much further in society.
You see your hostile environment has and I feel deliberately by way of policy and legislation spread itself across more than the Home Office alone, it is rife within the Department of Works and Pensions too and the effects are a far greater number of citizens some of which may also be British citizens of the commonwealth.
It is a department defunct and unfit for purpose including the contractors it hires to carry out the inhuman work they have been tasked with, the WCA is an affront to decency in which you carry on wasting millions, the appeals process and universal credit are both prime examples added too with the removal of legal aid justice.
But it gets worse as this which you and the DWP constantly deny has caused countless deaths and suicides of people who have been pushed too far and can take no more, today I heard of another such case you can read it and reflect here
When will this wanton abuse end as this young lady is not the first and no doubt will not be the end.
The sick and disabled who want nothing more than to live without fear and retribution deserve better a lot better and your answer is to refute and totally discount the many reports already published from many charities, DPO’s and the UNCRPD who called it “Grave and Systemic Violations of the UNCRPD Charter” .
Your feeble remit is that it saves money but nothing is further from the truth as it actually costs more to implement and saves nothing, indeed it is just a political choice even a senior tribunal judge says the monetary waste to the ministry of justice is aberrant in cost and wasted court time due to the number of appeals they are getting which the DWP should have foresight in that they have no hope of winning.
This is mostly caused by contractors ATOS, MAXIMUS and CAPITA who constantly lie on assessments due to giving foresight to their income rather than getting assessments correct first time.
I could go on for an age about how disabled citizens yes they are citizens are constantly violated and end up living in poverty due to the barrage of cuts they face it is equally shameful and deserves the same condemnation it is not the nation we wish to live in whether that be trying to access transport, finding toilets that cater for our needs finding parking spaces that are not abused by the able citizen the list is almost endless but it is that hostile environment we are attached to every day.
Their needs to be real radical change in all areas with disabled citizens involved really listening to their concerns because until you do that hostile environment will not end.
A BIT ABOUT ME
I will now write a bit about my situation as I am sure it will further the hostile environment I talk about here.
I am a 54 year old male living in a Tory council area and thus do not get the support needed from my MP as true to form he follows party line and will not deviate from that.
I had a hemorrhagic stroke in 1991 at the young tender age of 27 it was nearly the end of my life due to a massive brain bleed of my middle cerebral artery that needed surgery and induced coma none the less after two years of rehabilitation I made good recovery but still had right sided physical and executive dysfunction of the brain so was disabled
However I returned to work in 1993 out of boredom which I rightly thought was the best course even if now looking back was maybe a bit too soon as I am sure you are aware recovery is a long and hard situation
I stayed in work until 2007 until the global crash took its toll redundancy was my remit and knew finding more work for me was going to be that much harder given my health but it never stopped me trying as that is where I wanted to be and thus not the scrounging rhetoric your Govt put out in the countless press and media reports.
Do you remember David Cameron saying just before he rose to office “No one should claim a benefit unless they had a real need? guess what I had that need since 1991 but never claimed a penny until 2007 so I had already saved Govt a fortune in the DLA I was entitled too no one told me then I could claim it and besides I never had the time too anyway as by the time I got home from work I was tired and fatigued so slept to ready myself for the next day but imagine what I thought when I heard him say that it brought a few tears.
Although I claim DLA now my claim is still not right but refuse to push it in case I lose the little I get and thus chosen to wait until I convert to PIP given that I have already lost ESA due to the draconian 365 day rule that should not apply to long term disability.
I am forced to live in poverty on just the middle rate of DLA through no fault of my own but chose to keep the Department of Works and Pensions at very long arms length due to the hostility they breed.
I would love to go back to work but unfortunately it is not geared for someone like me and you even got rid of remploy a service set and geared for someone like me, none of your Govts policy and legislation measures in this area has ever made any sense and has been like trying to keep a sinking ship from sinking.
I hope you can take a long hard rethink of the damage, hostility and loss of life you are causing and change it for the better
I have built this thread with Thread reader so it was easier to bring to this forum
Whilst I do not wish to take away the absolute shambles caused to the windrush generation which has rightly been condemned by MPs and ciizens alike I had to make this observation.
The reason so was because when I read the thread it had a striking resemblance to that suffered by disabled people they have faced the same hostile environment whether that be with the DWP its contractors or indeed some citizens who lack the understanding.
They have been under pressure for evidence paperwork when many just like the windrush generation find it hard to produce due to time passed, legislation that is their to work against them, DWP Employees who lie through their teeth contractors who care more about getting the money rolling in than they do about the disabled citizens they are there to assess via a draconian test.
Appeals that are often won and were millions are wasted on fruitless appeals that should never have gone to appeal as this senior tribunal judge makes clear.
This Govt never either took heed from the reports from the UN CRPD and in which they said “Grave and Systemic Violations” they were not wrong because as reported tonight life has been lost from the Windrush Generation so too has many disabled lives been needlessly lost.
It is my belief that this Hostile Environment affects us all in some form or another and is honed in just about every Government Department indeed it is the bywords of Tory Government whether you are Disabled, Immigrant, Refugee, Homeless, a child in education without a free school meal, Unemployed through no fault of your own, a family facing the barrage of cuts, wanting access to justice via legal aid, foodbank user, struggling under poverty etc you will face this Tory Hostile Environment as it is written to be so in every piece of Tory legislation.
I’ve said it countless times before and ill say it again the civil service from all departments including the DWP who dish out the same “Hostile Environment” should not become the Tories lackeys and should now start showing some humanity and go on strike in support of the citizens they are their to help and as a mark that the WILL NOT accept this hostile environment any more.
As a final passing thought how can our Prime Minister have the audacity to call herself Christian.
Whilst I do not support those employers who wilfully avoid paying the National Living Wage (NLW) of which their are many I do have issue with naming and shaming when it raises contentious issues as I have found out today in the local press.
Today’s newly released report from the low pay commission names and shames 180 employers and in the main SME’s for breaching the NLW, fine many will say having read the report but it seems all is not so clear cut.
I have read of one employer perceived in doing exactly that in the report but then I went to the local paper to see all was not as it appeared, indeed this employer was paying the NLW but was also making deductions for loans that this company had been making to its employees to help them out and thus took there pay below the NLW.
This was a new start SME with little to no support from the Govt or able to afford an accountant.
Maybe this employer should have paid the NLW so as not to be caught out by the Govt and then with the employees consent had the loans paid back via direct debit but then hindsight is a wonderful thing.
But lets also remember whilst the Govt carry out this name shaming project they are no saints themselves as they carry out their austerity agenda and take on employees via internships for no or little pay.
ParcelHero supports calls for customs union
Signing up to a permanent customs union means no new tariffs on UK- EU goods and ends the threat of new red tape and border delays, says international parcel shipping expert ParcelHero.
The Labour Party’s decision to back Britain remaining in a customs union with the European Union (EU) after Brexit has received a broad welcome from the international parcel price comparison site ParcelHero.
In a speech today at Coventry University Labour Leader Jeremy Corbyn said: ‘We have long argued that a customs union is a viable option for the final deal. So Labour would seek to negotiate a new comprehensive UK-EU customs union to ensure that there are no tariffs with Europe and to help avoid any need for a hard border in Northern Ireland.’
ParcelHero’s Head of Consumer Research, David Jinks MILT, says: ‘Without getting into party politics, as an international company that ships thousands of parcels a month to the European Union, we strongly support Britain remaining in a customs union with the EU.’
Says David ‘Membership of a customs union means we will continue to share external tariffs with all EU member countries post Brexit – meaning no new tariffs and taxes between the UK and EU, and no border delays and complicated Customs Invoices just to send parcels and goods to France or Germany.’
Says David: ‘Britain currently shares a common set of tariffs with EU on imports from outside the EU, for instance there is a 10% tariff on cars and a 2.7% duty on golf clubs from outside the Union. Continued membership of a customs union with the EU will end the threat of new tariffs and taxes being imposed on UK exports to Europe and visa-versa. This means British goods won’t suddenly become far more expensive and uncompetitive in Europe, and EU-manufactured products won’t suddenly go up in price for British consumers.’
David says signing up for a permanent customs union is very different and less contentious than continued membership of the Single Market. ‘A customs union is not at all the same as the Single Market, which used to be known as the Common Market. While a customs union is about what happens at the borders of the EU, the single market is about free movement of goods and services within the European Union. The Single Market applies not only to goods, but also services, investments and people.’
Explains David ‘It is the Single Market which requires the free movement of people within the European Union, to allow for the exchange of services such as plumbing. That is likely to be far more of an issue with Brexit voters than border tariffs.’
Concludes David: ‘We hope that all sides come to realise that remaining within a customs union with the EU doesn’t go against the spirit of the nation’s vote in favour of Brexit and won’t impact on discussions around immigration or remaining under EU legal jurisdiction.’
You can see ParcelHero’s free webinar on how to minimise the impact of Brexit at https://www.parcelhero.com/…/e…/will-business-survive-brexit
ParcelHero’s Head of Consumer Research, David Jinks MILT, is available to supply unique written comment or for interview. David is available at firstname.lastname@example.org or on 07772 055748.