It’s your fault

Having a child with disabilities means I often find myself meeting with professionals who are supposed to be in place to support and guide me and make sure my child’s reaches his full potential. I use the world supposed because sometimes and some would say often this doesn’t happen.

I have met some amazing people who are incredible at their jobs and I have met some doozies who seriously need to either consider a career change or at least attend a training course on compassion, respect and understanding.

Yet thankfully I have never come across one like the one my friend has met this week. My dear friend is at breaking point she adores and loves her child with every breathe she takes but after literally sleeping for less than three hours on a good night for the last how many years she is broken. After asking again for the numerous time for a little support and respite she actually told a professional that she is close to breaking, she is physically and emotionally on her knees. To which the so called professional replied “well how is that going to benefit your child, you have a responsibility to keep yourself well for your child”. What the **** seriously I’m not sure how my friend stayed calm in this situation without demanding a manager or someone at a higher level but she did (I actually think she is just too tired to fight anymore). Yet how, just how can a someone say this, it’s not as if my friend wouldn’t love a good eight hours sleep each night, the chance to spoil herself and have a haircut, a night out on the town with the girls. She would desperately love this but as a sole carer, her child has and and always will be her priority. How is her exhaustion her fault?

I’m sorry but do people really believe this ? That parents of children with disabilities just cannot be bothered to take care for themselves.

Let me give you a little breakdown of my day,

It’s starts pretty much where yesterday finishes, I have medication to give at 12am, 6am, 8am, 12pm and 6pm. I also have an overnight feed to prepare from 12am till 7am, also another 8 Bolus feeds to give throughout the day.

I have a minimum of 10 nappy changes each day with all nappies weighed and recorded.

My child sleeps maybe 3 hours max at a time needing comfort, moving and generally loving throughout each night and that’s on a normal night. This can double or treble if unwell in any way.

To leave the house, besides feeding, changing and lifting my child into his wheelchair I also have to pack feeds, meds, and emergency protocols and emergency meds. I cannot ever just wing it and just grab my handbag and leave. His life depends on me carrying the medication he may need.

Let’s also realise that normal chores are often doubled or tripled, washing for example does not consist of the normal one outfit a day but the numerous we need from unexpected changes, sheets bedding etc etc.

Add to this caring for my child’s needs, dressing him, bathing him, moving him, lifting him and of course playing, amusing him and loving him.

Oh I almost forget I’m also my child’s personal assistant arranging, rearranging and chasing his numerous medical appointments, the EHCP paperwork, ordering his medications, his equipment and so on. I’m also his advocate fighting for the things that he needs to live with a quality of life he deserves, his voice and his fiercest defender.

So please tell me where or when I am supposed to take care of myself? And guess what I have a supportive husband, great older children and actually a care package that is working for me. For a professional to suggest my sole carer, 4 hours each month respite friend literally is bringing her ill health on herself makes me see red.

Times are hard, right now we have a government that believes everyone can make do a little more, well everybody besides the top 1% of course. My friend already has to make choices between sleeping and eating but hey I guess she can make do a little more. I mean who needs food? She loves and adores her child and so wants the best for him but all she was asking for was a little compassion and support, is that too much to ask?

If she does break and her child goes into a residential facility where he will need 2 carers to support him at all times he certainly will be costing this government so much more.

I actually didn’t know what to say to my friend when she told me what had been said, part of me wanted to go in kicking and screaming and demanding an apology for her. Yet I’m realising the problem is a lot wider.

When you have train companies believe it’s ok not to make trains accessible for disabled people, when you have superstores using disabled children for advertising whilst depriving them of the basic facilities to have their care needs met, I realise this world needs to change.

When you live in county where almost three quarters (72%) of carers have said they had suffered mental ill health as a result of caring, while well over half (61%) said their physical health had worsened.

You know things have to change.

I welcome the news released yesterday that a joint report by two Committees of cross party MPs, the Housing, Communities and Local Government and the Health and Social Care Committee, calls for new contributions from individuals and employers into a dedicated fund to be ringfenced to help pay for the growing demand for social care in the future. Highlighting the immense strain that the current system is under, including families providing unpaid care, the MPs have proposed a series of measures including a new “Social Care Premium”.

But there is a long way to go..

Figures released by Carers UK show that

1 in 8 adults (around 6.5 million people) are carers

By 2037, it’s anticipated that the number of carers will increase to 9 million.

Carers save the economy £132 billion per year, an average of £19,336 per carer

Over 3 million people juggle care with work, however the significant demands of caring mean that 1 in 5 carers are forced to give up work altogether.

Carer’s Allowance is the main carer’s benefit and is £64.60 for a minimum of 35 hours, equivalent to £1.85 per hour – the lowest benefit of its kind.

People providing high levels of care are twice as likely to be permanently sick or disabled

72% of carers responding to Carers UK’s State of Caring Survey said they had suffered mental ill health as a result of caring.

61% said they had suffered physical ill health as a result of caring.

Over 1.3 million people provide over 50 hours of care per week.

Again I will stress there is a long way to go.

Yet how hard or how little would be needed for those professionals in the lives of carers to actually think before they speak. To actually show compassion without passing judgement.

My dear friend hasn’t the energy to ask for an apology and right now is literally holding it together in her words “with Gods grace and the love of my boy”. But how many more are out there struggling feeling alone and broken?

I know how hard it gets and as I have said I am one of the lucky ones.

All I hope is that change will come but until then if you are struggling, if you are feeling alone please get it touch because none of us can do this alone but together we can and will make it.

No turning back 

After last Thursday’s EU referendum I have been struggling. It’s hard to focus when your whole view has changed. When the country you love seems so divided. To be fair I have been feeling so lost, adrift on a boat that has no navigation system and no stars to help me map my way.

Right now here in the UK we have been set a new course, it’s uncharted waters and without a strong captain of the ship the journey forward looks rather scary and certainly won’t be easy. Yet I’m reminding myself that it’s not only the Captain that sails the ship. In fact the Captain would never cast off without his crew behind him, supporting him, helping him navigate.

This is what we the people of the U.K need to do right now. We cannot change the fact that we have set sail, many don’t want to, but we can work together to make the journey smooth and safe for all passengers and crew.

Uniting to move forward making sure that the new rules, the new policies that are put in place benefit all. We cannot continue to have a society where the poor are victimised plagued by bias reality television programmes that allows this government to portray all by some. We cannot continue to have hard working families needing to use food banks. 

It cannot go on that our youth feel so lost and disillusion feeling as if the future is not theirs anymore.

Our country need to move forward creating growth and opportunity celebrating business and enterprise . We need to see expansion and the creation of jobs. Investment in social housing the NHS and all public services. Keeping them true to the values of serving people not wealth. 

Yet most of all we need to start fighting to regain our unity. Over the last months we have allowed the language of this country to change and I refuse to accept that this our future. That our respect for each other has disappeared. I don’t want to live in a country where racist bigoted words are allowed back into conversation. Where it’s acceptable to treat another as if they don’t belong. 

We are better than this.

We are so better than this.

This country is struggling the effects of the austerity cuts are hitting most. We need to stop being swayed by the lies that are being printed to deceive us. Trusting the wolves that wear sheep’s clothing.

It’s a time of accountability, as we move forward let’s demand that we have transparency from our politicians. Let’s educate and inform ourselves better so we can no longer be lied to. 

Let’s unite to make this country fair for all not just some. 

The EU referendum brought many out to vote. Excited by the process of democracy continue with the same enthusiasm for the next local elections, general election.

Cherish the power of your vote and together we can create a society that makes us proud again.

Let’s not allow the captain to sink this ship taking only the elite in the lifeboats to safety.
We all have the right to a safe voyage but right now we have to fight for it.  

#incrowd – Voting to remain

Tonight I have had one of the most inspirational evenings ever. I attended the #incrowd rally for the Labour Party in Edgbaston where the evening speakers were Billy Bragg, Jack Dromey MP, Neena Gill and an amazing young political blogger whose name I’m ashamed to say I didn’t write down and the incredible leader of the Labour Party, Mr Jeremy Corbyn MP.

The evening was just truly amazing from driving to the event with one of my local councillors a woman whose passion for equality and compassion I admire greatly to listening to the evening speakers as they passionately campaigned on why we need to remain within the EU and why voting on June 23rd is incredibly important.

I took many things away with me tonight, from the words of Billy Bragg (any errors are down to my lousy shorthand and interpretation), we need an Okie coki choice, an in and out and shake it all about. The fact is that there is parts of the EU that just doesn’t sit right with many of us but by staying in we can push for reform a hell of a lot easier than if we were on the outside.

Billy Bragg

Billy reminded us that Freedom is made up of three parts

Liberty – The freedom to express yourself, to have your views, ideas, beliefs heard.

Equality – Everyone has the right to be heard, from the refugee to the monarchy everyone has the right to have use their voice and to be listened to.

The third part he said is known as Fraternity but he believes that this should be now known as Accountability.

For too long people have felt unheard, so many people are listening to the far right because they truly believe that these are their only choice. Extremists are giving the unconnected a place to call home. The Labour party needs to reach these people and remind them that this is what they stand for.

ACCOUNTABILITY. 

The Labour party needs to be the one too hold the markets to account.

That Europe is for people not for profit.

The decision we all make on June 23rd will change lives and I totally agree with Billy when he says we need to use our vote wisely.

From Jeremy Corbyn’s speech  I was reminded why he won the leadership by a massive margin. He is a man who is true integrity, he is simply the real deal.

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He started his speech firstly by discussing the campaigns and to be honest the disgraceful way the #Brexit campaign is being run, with Boris and his cronies (my words) turning out the race card at every moment, blaming the current issues of this country on immigration. Jeremy reminded us of the importance of immigration especially within the medical field and the shared knowledge and expertise this has brought to this country. He then when on to talk about the leave campaign and their attempt to scare people into believing the NHS would be at risk if we stayed within the EU. His point was clearly made when he reminded us of the Tory party destruction of the NHS and how ironic it is that now Boris and others speak of saving something they have strove to destroy. Jeremy passionately reminded us of the core values of the NHS, healthcare for all and that the Labour party are constantly fighting to keep it funded and safe from the privatisation lobby of the Tories. He then went on to thank every member of the NHS for all they do and I personally echo that, I love our NHS.

Jeremy spoke of what the EU has done for us, 4 weeks paid holiday, maternity leave and paternity leave all things which were won for by members of the EU working together. Won by the collective joining forces.

The EU offers us a chance of being part of being something bigger, to be challenge corporations and big business. To fight for those who need us, to be compassionate across borders.

It also offers us the chance to protect our world, to fight against climate change and pollution.

Jeremy also reminded us all that we are not one solitary country on this planet we are part of a wonderful world with all its faults, but the fact is unity is what will always fight against terror, greed and oppression.

Together we are stronger. 

I cannot bear the thought of leaving the country I am so proud of in the hands of buffoons who will use fear and hate to get their false points across. In the hands of a government who destroys public services, who are out to destroy social care and treats the poor as if they were worthless.

I am not an economist and far from a political blogger but on the 23rd June I will ask you all to join me in voting remain not because I believe the European Union to be perfect but because I believe in people working collectively for the common good.

I am not alone in this world and I don’t believe where you are born or the circumstances of your heritage should define your future. A child is a child born here in the UK or in the war torn Syria and its for that child I will vote remain.

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A typical Thurday on BBC Question Time.

Growing up I was taught that polite conversation should never include politics and or religion and whilst I agree they both can cause heated debate I do think it’s time both were spoken about a hell of a lot more.

On Thursday I was lucky enough to be chosen to be part of the BBC question time audience. I use the word lucky, as well over four times as many people applied than was accepted. The show was filmed in my home town and I was rather proud to be part of it. 

The whole evening was interesting, from the advice and suggested questions I was given before the actual evening to the after show chats. 

I got to speak to individuals whose views ranged from far far right to far left. 

Personal stories which have formed personal opinions and some which I have no idea where they came from.

The biggest and scariest insight I took from this evening was how much people believe in news headlines. How whatever is printed is took to be truth.

This really scares me, not only because a lot of media publications, programmes are owned by the same man and completely bias to whatever keeps money in his pocket but because I truly believe people should question everything.

A lot of the evening questions were based on the EU and to be fair under the rants and false statistics there were some interesting opinions. I actually really admired the views of writer and broadcaster Paul Mason who stated in principle he wants to leave the European Union but is not sure he could vote exit and leave this country in the hands of the Tory right. Something I completely agree we. 

In fact being truthful I think right now I will vote remain, not because I believe in the EU completely but because I do not trust those that would then have total control. 

There was a lot of heated debate regarding this subject but what really gets me is the fact that immigration is getting the blame for everything. If you did happen to watch the programme you will see me challenge this falsehood and although I found myself a little tongue tied and emotional I do hope I got my main point across. Blaming immigration for everything is a true cop out and a really bigoted view to have. People need to look a lot closer at the real issues in this country starting with the evil known as austerity. 

Poverty is evil and with it breeds hate and fear. My hope is that this anger can be addressed towards those politicians who vote for tax breaks for big business whilst over a million people are using food banks. Also before someone starts letting their mind sway into believing that all food banks users are people on benefits let me tell you that you are wrong a high proportion of users are working families who now thanks to the cuts cannot feed their families.

So thankfully this Thursday I was given the opportunity to remind people of what I believe is the true issue with this country. In fact as I followed Twitter nervously watching the show ( they record an hour or so earlier) I was proud to the be the woman in red who talked a lot of sense”. 
IQuestion time was an experience and one I would love to repeat. In fact it has just stirred up in me more desire to learn more about politics and those running our country. 

I was also lucky enough to briefly chat with Paul Mason, Tim Farron and Yvette Cooper outside the town hall, all three are really lovely people with valid points raised throughout the evening. I even managed to get a selfie with Yvette which rather made my night. I may be an ardent Corbyn supporter but I do admire Yvette a lot. 

So there you have my typical (I wish ) Thursday evening. Politics and religion may never be classed as polite conversation but the way people here in the UK are struggling is far from polite.

We need conversation, we need to challenge those in power. We need to stop the vulnerable people of this country being abused and neglected by cuts to social care, mental health, disability etc. Cuts to NHS and so much more. 

Now isn’t the time for politeness it’s a time for standing together and shouting loud. 

Collectively our voices can and will be heard. 

Radical and Tea

When I come across a site that offers some amazing things I cannot wait to share it with you all. So let me introduce you to The Radical Tea Company. 

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Anyone who knows me, knows how passionate I am about protecting the vulnerable, by being a member of the Labour party I hope I stand up for all not just elite and wealthy. So when I found The Radical Tea Towel Company I was beyong excited. Their amazing products allow me to fight discrimedation and drink tea, two of my favourite things.

 

Beyond really amazing tea towels the company offers more. I have already purchased myself a mug which I love and some of their wonderful cards.

 

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You can advocate whilst you drink or send a card to inspire someone to keep fighting the good fight. They have a great selection of  tea towels, mugs, gifts and loads more. I have my eye on this beautiful William Morris apron, though I am also in love this fun Left wing one. 

 

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I am seriously spolit for choice.

 

Take  a visit over to The Radical Tea Towel Company

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Let’s change the word together.

 

 

 

Playground Antics in the race for the Labour leadership.

Reading the news the last few days has really made me question my loyalty to the Labour Party.  The inner bitching between the MP’s is reminding me of school playground antics.

Labour party

It seems that if Jeremy Corbyn wins the Labour leadership a number of MPs are threatening to overthrow him and are now trying to damage his credibility.  With interviews from that compulsive liar better know as Tony Blair and other false stories I am totally shocked at the behaviour of these so called servants of the public.

Tell me how they can behave this way?

Firstly they are the voice of the public and secondly they should believe in democracy!

Jeremy Corbyn has ignited a passion back into politics that has been missing for a very long time.  After the austerity nightmare from the Conservatives he is giving people hope. It has been a long time since we have seen such interest in politics.

His policies make sense and they certainly aren’t just sound bites.

He knows how to turn this country around and he has the grit and determination to do just that.

I will be voting for Jeremy Corbyn and I’m proud to do so.

Jeremy Corbyn for Labour leader

 

If he does win the leadership election I want to see the Labour Party behave and unite under his leadership.  The undercutting and party warfare helped the Conservatives to victory this year lets not make the same mistake in 2020.

Let’s make the Labour Party something we can be proud.

  • Equality in all fields.
  • The empowerment of the younger generation.
  • Education accessible for all.
  • Protecting the vulnerable.

The Labour Party can and will be again known for its vision.

  • Supporting the NHS,
  • Supporting business and industry.

This can all happen if Labour MPs respect the wishes of their members and unite behind whoever is voted as their leader.

The opposition is the conservatives and this should not be forgotten.

I am excited for the future of the Labour party and hope that inner fighting stops and the party comes together.

I trust that the MP’s of the Labour party will remind themselves that they represent their members and will put their personal agenda’s aside and support whoever is voted as leader.

I will be voting for Jeremy Corbyn because I believe in him, I admire all that he stands for.

I truly believe that he is the leader the Labour party needs.

Jeremy Corbyn for leader

A woman leader? 

I have been following the contest for the labour leadership avidly and would have been at the Birmingham hustling this weekend if it wasn’t for a visit from a ambulance and a issue breathing. 

  
Anyway I am loving the whole thing, learning about the candidates and what they stand for. I was talking to my girls about it all (one of my lectures they call it) when one asked me ‘why I didn’t want to see a woman leader’?

Now don’t get me wrong I am a feminist and would love nothing more that to see a woman lead the party, but I have to believe in the politics of the woman.

Being a feminist does not mean that we should support any woman just because of her gender. It means women should have the same equality in standing. But for me if the said women in this case political views do not inspire me I cannot vote for them just because of their gender. In fact I would be doing them a disservice if I did. 

I’m a lefty and I believe that all people have the right to a quality of life. I am forward thinking but truly don’t believe we have to step on the poor and disabled to get on in life. 

I will fight for human rights with every ounce of my being. I don’t view life in a ‘what’s in it for me’ way. I view it as a collective being, humanity.

I get angry when I hear people hate on migrants and those on benefits. 

I am furious at tax breaks for the super rich and fuming about the damage privatisation is doing to our country.

I strongly believe disabled people should have the services needed to help them live a healthy and independent life. That no one should have to wait or refused treatment. 

To be honest I am truly frightened for the people of this country over the next five years. This is the reason why I am so interested in the Labour leadership debate. 

I cannot vote for either Yvette Cooper or Liz Kendall because they are woman, I have to believe in them and to be honest I’m not sure I do. 

Having a women in leadership would be amazing but it has to be the right women. I mean do we really want another Maggie Thatcher, shall we all shout ‘poll tax’.

So my answer to my girls was “yes I would love to have a woman leader, but it has it be one I believe in”. So this time around it won’t be a woman getting my vote. My vote will be for Jeremy Corbyn because his history of fighting for equality, for fairness, transparency and justice holds true to the values I hold dear. People are already telling me it will be a wasted vote but I’m tired of politicians voting for party rather than conscience  so I’m certainly not going to do the same.

   

Would It change what I believe? 

As I placed my lottery this weekend I was wondering about what I would do if I won the jackpot. A dream i’m sure we all have had at one time or another. I was wondering if being a millionaire would change my political view point. 

It’s easy I guess to say tax the wealthy when you are poor. Would my view be the same if I was one of the elite?

I didn’t have to think about it that long because I truly think my answer would be no.

I don’t think my viewpoint would change.

You see no amount of money can replace my compassion or my empathy.

But most of all money couldn’t replace my need to feel part of something.

You see we have all been sold the lie that being individualistic is the only way to live. To only think about oneself and our own wants and needs. But this only leads to one thing loneliness. 

The consumerism lie that things can make you happy has been pushed down our throats way to long.

Yet the truth is far from it. 

The newest model phone can be fun, but will it hug you close as you fall asleep?

That gorgeous designer handbag will look good on your arm but will it laugh out loud at your stupid jokes or wipe away your tears when you are sad?

Community and relationships are the greatest of things and money cannot buy them. 

Having money won’t stop me loving on children who have no place to call home.

Stop me fighting for services and support for my friends who are either disabled or raising disabled children.

Having a full bank account will not stop me encouraging those who need support or guidance. 

I’m not going to lie and say winning the lottery wouldn’t be amazing. My adapted home on a farm depends on it. 

Yet whilst the money would make life easier it wouldn’t make me complete.

It’s my, family, friends and passions that do this. 

   

There has to be a line they don’t cross.

I’m on holiday right now trying hard to deal with memories that are haunting me whilst creating new ones to cherish and love.

Yet even here in the middle of nowhere I cannot avoid the arguments and discussions following the interview given by Samantha Cameron about the loss of her son Ivan.  

Part of me wants to be naive right now and believe that this a mother just opening her heart about the pain and devastation she has felt from the loss of her son.

I want to remember the shared look we exchanged as we acknowledged the loss of our children. How that brief moment in Downing Street span across economic backgrounds into empathy and shared understanding.

As a grieving mother I cannot imagine a mom using this loss as a campaign tactic.

Please no.

Yet as naive as I wish to be the Cameron’s  have already proven that all experiences, all struggles are open for exploitation.

We remember David Cameron telling us he understood  how hard it is to raise a disabled child. How he will be supporting families as they struggle. Only for him to walk back over all his promises in a dramatic fashion. With cuts to services and benefits that have dramatically left people struggling to survive. 

Cut in services

Bedroom tax 

Local government budgets being slashed leading to less respite, play schemes etc etc.

And so much more. 

Even now if leaked information is to be trusted if the conservatives stay in power there will be more cuts coming to those who are disabled and those caring for them.

To be truthful I am lost for words. 

The whole situation is making my stomach ache.

I want to believe that this story, that Samantha Cameron’s interview is not part of the campaign trail.

I want to honestly believe that she is not exploiting the hearts of those like myself who grieve desperately for their child.

In fact I have to believe this. 

To accept anything else would make me question humanity.

Would make me question everything.

Surely there has to be a line a political party won’t cross?