FIGHTING THE GOVERNMENT

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Many MPs now have a presence on Twitter.  If you use Twitter, please copy and paste the text below and remind them of the law that needs changing for students with cancer who suspend their studies

Students suspending studies for a year to recover from cancer receive no financial support from the government #time4change

Thank you!

"Look at what we did Mel"

 One of the problems with cancer, and there are many, is the trouble you have getting the right financial support.  Advice differs from county to county and most information has to be looked for, it doesn't come to you.  Below is Melissa's story regarding financial support, which is now my battle with the government.  A government who consider it correct not to give someone with cancer any financial support, if they are studying.  Please read on....

My daughter Melissa was diagnosed with non-Hodgkin’s lymphoma in August 2007, the day after her 20^th birthday.  At the time she was a second year student at Aston University, Birmingham and as well as studying psychology, she also helped new students to settle into university life, she had just been elected editor of the Aston Times newspaper and she mentored year eleven students in local schools who aspired to get into university, but were maybe just falling short in their studies.

Following her diagnosis, with the prognosis for cure being very good, Melissa’s intention was to continue her studies alongside her treatment. She was keen to carry on a normal life as possible, however, life was far from normal.  After about four weeks, it became apparent that this was not going to happen. The chemotherapy was leaving her drained and was effective for only two weeks and not the three weeks that the consultants were hoping for, and with the tumour being in her chest her breathing was affected. At this point she decided to suspend her studies for a year, concentrate on recovering from the cancer with a view to returning to university in twelve months time. She spoke with the university and this was agreed, her consultant also thought that this course of action was in Melissa’s best interest.

Melissa had been due to begin her third year at university in October 2007, and due to a delay in processing, she had not received her student loan. We contacted the department responsible for issuing student loans and told them that Melissa was suspending her studies for twelve months and would not be requiring her loan.   At this point we applied for Income Support (now changed to ESA). We were told that we could not apply for Disability Living Allowance for three months and that we could not apply for Incapacity Benefit as Melissa had not paid enough contributions. Melissa was totally reliant on getting income support as she had no other form of income and like most people her age, no savings.

We were told that our application for Income Support had been denied, as Melissa was still a student and therefore deemed to have income via her student loan. We explained that she hadn’t drawn on her student loan and that she was suspending her studies, but this made no difference. The law stated that she was still classed as a student, she was deemed to have income from her student loan and therefore she was not entitled to Income Support. It stated on our letter that had Melissa been deaf, disabled, a single parent or a refugee, she would have qualified for income support.  This is not a 'dig' at those groups, far from it, it is merely an observation.

At the time Melissa had prescriptions to pay for (this was prior to the law change on free prescriptions for cancer patients) and more than anything needed just a small amount of money to give her some self respect. She had gone from being an independent young woman at university to living back at home and having to rely on mum and dad to help with her most basic needs. If she wanted to buy anything, from a bar of chocolate to sanitary products, she had to ask mum and dad for money. She wasn’t asking for hundreds of pounds a week, just enough to live on and enable her to buy basic provisions and all this at a time when she was trying to cope with a life threatening illness that had changed her life beyond recognition.

We had to make frequent trips to the hospital as the doctors struggled to find the chemotherapy to successfully target Melissa’s lymphoma and we also had trips to Nottingham City Hospital (70 mile round trip) and Derby Royal Infirmary (30 mile round trip) as Melissa had to have regular PET and CT scans to monitor her tumour. My wife was off sick from work due to the stress of the situation and was caring for Melissa and as I was the only driver in the house, I was juggling work commitments and ensuring that Melissa attended of all her hospital appointments. The stress of having a daughter with cancer who wasn’t responding to treatment was added to by our continual battle to gain financial support for our daughter. It was unimaginable.  At this point, in early November 2007 I contacted my MP, Janet Dean.

The initial response from our MP was a standard reply, quoting the law as it stood. I knew the law, what I wanted to do was change it. There then followed a series of emails between myself, my MP and the DWP minister at the time who was James Plaskitt MP. Mr Plaskitt’s initial response was again to quote the law at us. Again I followed up Mr Plaskitt’s response with an email to my MP, Janet Dean explaining that I wanted to change the law and also, how, as an adult, was Melissa supposed to live with no income whatsoever.

On this occasion, I received a reply informing me that Melissa had two options. The first was to abandon her course; the second was to draw on her student loan. I could not believe that a government could be so heartless and show such a lack of understanding.

As I had previously mentioned, returning to university and continuing her studies was one of Melissa’s main goals. It was giving her something to aim for. If she was made to abandon her course, then all the hard work of the previous two years would have gone to waste. She would have had to start again and in the process incurred more debt. She would be paying another four years for study on top of the two years she’d already paid. It seems incredibly heartless that a student should be expected to abandon their course, just because they have been unfortunate enough to be diagnosed with cancer. The second option of using her student loan we felt was ridiculous. A student loan is to support a student’s education, not to provide income when a student is too ill to continue with their studies.  A student loan is not a form of health insurance.

I wrote to David Cameron at the time, whilst he was leader of the opposition and in his reply he stated how “the Conservative Party are committed to helping the most vulnerable in society” I still have the letter!

Below is an extract from Melissa’s blog, written during November 2007. Please be aware that this was written whilst Melissa was receiving chemotherapy and other drugs. Melissa was a Grade A English student and her co-ordination etc, was affected by the drugs, hence the spelling/grammatical errors.

“Enjoyed freshers fair a coupla of weeks ago but i got home n slept from 6pm onwards till the next morning, totally knackered me out n I was pretty tired until the tuesday. Made me realsie that trying to carry on with my course was gonna be really hard. Spoke to my head of school and she said she thought the best option was to take a leave of absense n so did i. with trying to get into uni being an added pressure i dont really need.  plus trying to keep on top of coursework, practicals and exam deadlines is hard enough when im in uni never mind trying to work totally from home. It just wasnt gonna happen. I'd rather start my seciond year when i can do it properly and have a proper year of uni rather than a shitty stressful one! so i'll be back in september to carry on with my course (i swear ill be at uni forever at this rate!). Plus we dont know whats gonna happenw itht his cancer malarky, it could be that my treatment is done by christmas or it could be that it carries on and with not knowing it makes it much harder to plan so i thought screw it, lets just focus on getting better n then next year i can properly enjoy myself (and do my course as well!)”

Proof, if needed of the importance of being able to suspend studies and then carry on, rather than abandon and have to start again.

In terms of a student using their student loan, again this is immoral, in Melissa’s case she would have been expected to pay a four year loan for a three year course.  How many groups in society have to take out a loan to recover from serious illness? It is totally unfair and some would argue an infringement on their human rights and again I re-iterated the point to James Plaskitt and Janet Dean.  I always assumed a student loan was to fund study, not act as health insurance.

Melissa finally received some financial support in February of 2008, nearly six months after Melissa was first diagnosed. This came in the form of Disability Living Allowance and was only paid because she was now so ill that she fitted the ridiculously harsh criteria for receiving that benefit.   In the meantime, grants from organisations such as CLIC Sargent and MacMillan and even our own hospital’s charity fund had meant that as a family, we had just managed to keep our heads above water financially.  In March 2008 Melissa qualified for Incapacity Benefit due to the young people’s rule.  It took nearly six months from diagnosis and five months from our initial application to receive financial support and although we didn’t know it at the time, Melissa was in the final weeks of her life.

In the early hours of 11 May 2008, Melissa passed away.

Over the next 18 months more emails followed as I continued with my campaign to get this law changed. 

In January of 2010 the issue was the subject of a House of Commons adjournment debate (Speech made by Janet Dean MP attached). This was attended by Janet Dean MP and James Plaskitt MP. All at the debate agreed this was wrong and needed to be sorted out.

In March of 2010 it was agreed by the Labour government that changes needed to be made and  they announced that in November of that same year, the rules regarding students with long term illnesses would be changed, so that any student suspending their studies to recover from long term illness would be eligible for financial support.

In May of 2010, the government changed, but assurances were given that the changes would go ahead.

Finally, in November of 2010 the law (attached) was changed, but the changes were not effective enough. The law change regarding the deeming rules, which now means that student loans are not deemed as income when assessing entitlement to benefits, was a crucial and necessary change. However, this has only partly addressed the issue. The ruling now stated that students must be in receipt of DLA in order to get ESA and as a consequence, many students are still unable to claim financial support during their illness.  The entitlement to ESA, without the need to be firstly eligible for DLA, needs to be made the next change in order to ensure fairness and equality for students who are too ill to continue studying, but who do not wish to abandon their course.

Students who need to suspend their studies for a year to recover from their illness will not, in many cases, meet the criteria necessary to receive DLA.  There seems to be a misconception that a student in the position of suspending their studies due to long term illness will automatically be entitled to this benefit.  This is far from true.  In order to qualify for DLA you need to have a physical or mental health condition severe enough to meet the criteria set out by the Department of Work and Pensions.

You need to have had these ongoing needs for at least three months and they must be likely to continue for another six months.  These needs are based on care needs and walking difficulties.  Students who are undergoing treatment for cancer or other long term illnesses will not necessarily meet these needs; however this does not mean that they are well enough to continue their studies.  What this means is that students who do not qualify for DLA, but who need to suspend their studies whilst recovering have no means of financial support as there are no benefits available to them.  

To give you an example, I was contacted by a student’s mother who told me her daughter was denied DLA because her daughter’s chemotherapy finished in four months time and therefore she did not meet the criteria for having ongoing needs for six months.  I feel that this example highlights a lack of understanding of the specific needs of students in this situation by those setting the criteria for Employment and Support Allowance.  Treatment doesn’t end when the last drop of chemotherapy enters the veins.  If only it were that simple.

In July 2011 I received a letter from Lord Freud (Minister for Welfare Reform), via my MP Andrew Griffiths, telling me that the Minister of Disabled People had taking this as far as he can.  That is not good enough. There are students who, when suspending their studies to recover from cancer are receiving no financial support whatsoever and this must change.   

The battle with the government continues.  It is appalling that in this day and age we treat our young people in this way.  It's not rocket science.  It's a simple adaptation to a current law that could be made easily, but in Lord Freud they have a minister who does not understand people's basic needs.  I am all for getting rid of the cheats and scroungers that blight this country, but whilst doing that, the government must not lose sight why the welfare system was originally put in, to look after those in need, or as David Cameron put it, in his letter to me in 2009, "to help the most vulnerable in society"

The latest article on our fight to change this law is here http://www.burtonmail.co.uk/News/Brush-off-wont-stop-benefits-reform-bid-23112011.htm

The fight to change this injustice goes on ........

July 1st - Article in The Weekly News regarding Student Benefit fight with the Government - Click here to read the article