The shock of June 2011
Leading up to June 2011, Rob was a healthy, happy young man. After a successful school career at Colchester Royal Grammar School he won a place at Loughborough University to read Geography and Management. Rob excelled at most sports and the outstanding facilities at Loughborough were the main reason he chose to continue his education there. He was not disappointed with his choice, and he quickly settled into university life, enjoying a wonderful first year.
In early summer 2011, Rob began to feel unwell. He was initially diagnosed with flu, and prescribed some antibiotics. But by the time the summer vacation arrived it was clear that he was suffering from something more serious. On 24 June he was diagnosed with acute myeloid leukaemia and was admitted to Addenbrookes Hospital in Cambridge as an emergency.
A financial challenge
Rob had to defer his second year of study at Loughborough, spending most of that summer as an in-patient at Addenbrookes, where his parents, Lorraine and Philip, were constantly by his side. He underwent four separate episodes of intensive chemotherapy and suffered the inevitable side-effects. As if this wasn’t enough, Rob found himself with no money as his Student Loan had ceased – he was not at that time studying – and yet he was, of course, quite unfit to undertake any type of work.
Surely some Government support?
Most of us would think that in a sophisticated caring society there would be practical and financial support for someone in Rob’s situation. As it turned out, this couldn’t have been further from the truth.
In July 2011 with the support of his father, Philip, Rob submitted an application for Employment Support Allowance (ESA) having been advised by Macmillan Cancer Relief that he would definitely qualify. Rob and his parents were amazed to find that, in August 2011, his application had been rejected on the grounds that he remained in full time education and had not “abandoned his course.” Rob was advised of his right to request an informal reconsideration of the case, which he did, but this simply confirmed the original decision to reject the application. Rob, still very seriously ill, was therefore left with no option but to submit a formal appeal.
In Rob’s appeal application it was argued that the interpretation of Rob’s position – that he was not in full-time education – was entirely consistent with the change in policy introduced in October 2010 as a result of the selfless crusade of Ian Leech, whose daughter Melissa was diagnosed, at the age of 20, with non-Hodgkins lymphoma and subsequently, and very sadly, died of the disease. Melissa, like Rob, was diagnosed after her first year at university and was forced to take a year out. Also, like Rob, she had no income or capital on which to live. Melissa’s father contacted his MP who raised the issue in the House of Commons and forced an acknowledgment from Helen Goodman, the then Under-Secretary at the Department of Work and Pensions, that money would be found to make it an automatic right for students like Melissa (and, by implication, Rob) to receive automatic benefits. Sadly, this change in policy does not appear to have been properly or fully communicated at local level.
Rob’s appeal was scheduled to be heard in Colchester on 15 December 2011, with Philip due to appear as his representative. On that morning, Philip received a telephone call from the Court office advising him that the judge had considered the appeal papers submitted in advance of the hearing and had reached the view that Rob’s appeal should be allowed. Consequently, the judge advised Philip that he would be finding in Rob’s favour. Surely, this was good news! It meant that Rob was entitled to receive ESA since his student loan was to be disregarded and he was to be considered not to be in full-time education at the date of the claim.
Payment at last
It was not until February 2012 that Rob received his entitlement of ESA, back-dated to the date of his claim. Ironically, by that time, Rob’s treatment had finished, and, typical of his character, he had successfully sought both paid and unpaid work. He had no need, therefore, to make a further claim for ESA.
By this time, Philip had met with his then MP, Sir Bob Russell, who had advised him to make an application for Disability Living Allowance to help support Rob financially. Despite Sir Bob writing a letter to the DWP to support Rob’s claim, this application, too, was unsuccessful.
Remission for Rob…
Rob and his family were delighted that the remission of his leukaemia meant that he was fit enough to resume his studies at Loughborough by September 2012. As the year progressed, he started to regain his confidence and settled back into university life, playing a full part in student life, captaining the University’s Second Xl cricket team and achieving a 2(1) in his second year exams.
…but one year on
At the end of the 2012/13 academic year, Rob again began to feel unwell. A series of tests revealed what Rob and the family had been dreading – his leukaemia had returned. He was readmitted to Addenbrookes on 24 June 2013 – exactly two years after his initial diagnosis – and again spent the majority of the summer there. He received a further three episodes of chemotherapy and was due to receive a cord blood transplant at the beginning of November.
Rob had no choice other than, once again, to defer his university studies for a further year. Safe to assume though that he could apply for ESA; after all, his entitlement had been established back in 2011. Surely, this would be no more than a formality?
As it turned out, that assumption was very wrong! Rob’s application was rejected and the family’s request for an informal re-assessment was, as before, unsuccessful. The DWP claimed – unbelievably – to have lost its copy of the Tribunal’s 2011 decision! Although Rob’s family provided them with a copy it made no difference and, at this most delicate and sensitive time, there was no option other than to submit yet another formal appeal to the Social Security Tribunal.
The second appeal
Despite all that had gone before, the DWP once again argued that Rob was not entitled to ESA because he was ‘in education’. It saw fit to rely upon an earlier decision of the Commissioners that a student remains in education unless he has abandoned his course “totally, finally and permanently”. Rob had fully intended to return to Loughborough to resume his studies in September 2014 and therefore did not meet the criteria.
The DWP chose to ignore the decision of the 2011 Tribunal: that Rob was entitled to receive ESA since his student loan was to be disregarded and he was to be considered not in full-time education at the date of the claim. This was inexplicable as his circumstances at the time of the second claim were exactly the same as they had been at the first!
Sadly, Rob never received the cord blood transplant scheduled for November 2013. His leukaemia returned before it could be carried out. Rob spent the last month of his life in St Helena Hospice in Colchester. He died there at 1.30am on 9 December 2013.
By a terrible twist of fate, Rob’s appeal was due to heard at 10.00am on the morning of his death. Philip had already written to the court office to advise them of Rob’s terminal illness and request an adjournment as it was obvious that neither Rob nor his family would be able to attend. Their response was to issue a Directions Notice, stating that a postponement would not be possible. In what can only be described as an outright cruel and totally insensitive manner, the Notice went on to state: “the appeal has no prospect of success, as [Rob] has not abandoned his university course”. It is beyond belief that anyone – or any organisation – could react in such a way to a family in the throes of grief, to say nothing of the human rights implications of reaching a conclusion without listening to the arguments.
ESA – the saga rolls on!
Philip was therefore forced to make written representations to the Tribunal on Rob’s behalf. The Tribunal once again found in Rob’s favour, allowing the appeal upon precisely the same grounds as before.
It can’t get any worse, can it?
Bad though Rob’s treatment by those dealing with his application for ESA had been, it was as nothing compared with the treatment he received in connection with his application for a Personal Independence Payment (“PIP”).
The PIP was introduced between Rob’s first and second spells of chemotherapy treatment. When he fell ill for the second time he was encouraged to make an application for a PIP, which was duly made in July 2013. The application was acknowledged at the beginning of August and a form was sent to Rob asking for details of how his illness affected him. That form was completed and returned, and the family was advised that a decision would be made by October. October passed and they heard nothing. Philip made countless telephone calls asking for progress but was simply told that no decision had been taken.
How could this happen?
Finally, on 2 March 2014, nearly three months after Rob’s death, the family was advised that Rob’s application had been unilaterally cancelled. The reasons stated were that Rob had died and the DWP had been unable to contact his next-of-kin. How could this be when Philip was phoning them on an almost weekly basis? How could this be when Philip’s address and contact details had not changed? Surely, almost everyone would consider this course of action to be wholly unacceptable and, some may say, even scandalous.
During the last two and a half years of his life Rob had had to endure a living nightmare. For anyone, the trauma of a life-threatening illness would be bad enough without being compounded by financial disaster and astonishing insensitivities. For long periods Rob had no student loan or grants and no ability (because of his illness) to seek work, leaving him totally dependent upon his family for support. To have to suffer the symptoms of leukaemia is more than enough for a 21-year old to endure, without the ignominy of a total loss of financial independence.
The system must change – Now!
Rob and his family experienced shameful hostility from many DWP staff. They were made to feel that they were a nuisance and that the DWP’s objective is to ‘get the case off the desk’. They were never given a case worker, never provided with an individual’s number to phone (only call centres), rarely called back when they left messages, given unobtainable fax numbers and told that correspondence by email was not possible.
Is this really the 21st century? Is it the DWP’s wish that their claimants will give up in disgust and go away or, perhaps, die?
Not a penny
In desperation, in March 2014, Philip wrote to our Prime Minister, David Cameron, asking him to intervene and to ensure that a full investigation is carried out so that lessons can be learned, appropriate changes in practice and procedure can be made, and that, in Rob’s case, justice may be done. It may therefore be no coincidence that, shortly afterwards, Rob’s estate received all the arrears of ESA and PIP. But of course Rob himself had not lived long enough to see the benefit of this. Although this should have been the end of the saga, having received the lamentably late payment due to Rob’s estate, Philip subsequently received a letter from the DWP saying that although they would not be asking for the money back, they had actually paid up by mistake!
Philip corresponded with the then Secretary of State for Work and Pensions, Iain Duncan Smith, via his then MP, Sir Bob Russell. The Department argued that there are difficulties in defining illnesses serious enough to render a student incapable of continuing with his or her studies, without unreasonably widening the eligibility for benefit support to those with minor, short-term ailments. We cannot see how this can possibly be the case; surely, it should be quite straightforward to differentiate between major terminal or life-threatening illnesses (such as cancer, heart or liver disease etc) and other much less serious diseases?
Philip sought a meeting with Iain Duncan Smith to enable him to air his views, but requests were ignored. Matters were delayed because of a National Election and then by the European referendum which resulted in changes in office at the top of Government. However, Philip’s current MP, Will Quince, working with Andrew Griffiths, MP for Burton (who has for some time been pursuing these issues on behalf of the Leech family) sought Adjournment/Westminster Hall Debates in order to attempt to galvanise the Government to bring forward regulations to make changes to the law which were promised to Mr Griffiths some time ago.
Mr Quince met with the then Secretary of State, Damian Green, in September 2016 to discuss this matter. Mr Green recognised the rather unique and rare situation and why we are so keen to get it addressed. He confirmed that he and his team would be look into the issues raised. Unfortunately, Mr Green was removed from office in December 2017. So Mr Quince attempted to arrange a meeting for himself and Philip with Sarah Newton MP, the Minister of State for Disabled Persons. The meeting was initially refused, but after Philip wrote to the Prime Minister asking her to intervene, Mrs Newton agreed to hold it in June 2018. The meeting was extremely positive. Mrs Newton confirmed that her department was well advanced in its work to introduce the necessary changes but yet again nothing happened. Finally, in February 2018. Mr Quince raised a question with Amber Rudd, the Secretary of State, in the House of Commons. Ms Rudd acknowledged the problem and confirmed that her Department were working on a solution. Please see the video clip below.
In a letter to Philip dated 3rd April 2019 (view here) Ms Rudd confirmed that her Department is taking our concerns seriously and is actively exploring all options to address this “challenging and complex issue”.
The saga continues…
OUR FIRST AIM
So now you can understand the motivation behind our first aim – To provide practical and/or financial support to young people with life threatening or terminal illnesses.
Without the loving support of Philip and Lorraine, and their dogged determination to fight his corner, how would Rob have coped? As you read Rob’s story, know that there are young people out there without that same level of support, love and considerable know-how behind them. These are the people that Rob himself wanted us to help in setting up the RGF Foundation. Quite frankly, we cannot allow what happened to Rob to happen to others.
OUR SECOND AIM
And what about our second aim? – To provide financial support to young people who demonstrate exceptional commitment and/or ability in the worlds of sport or the performing arts but may be held back by their financial situation from pursuing their goals.
Rob’s two brothers, Tom and Sam, were eight and five when Rob was born, and were both, like their Dad, mad keen on all sport, but particularly on cricket. It was therefore inevitable that Rob should have learned to throw and hit a ball almost before he could walk!
Rob developed into a talented sportsman, representing his school, Colchester Royal Grammar School, in all the major sports. He particularly excelled at cricket, and had just broken in to the Colchester & East Essex lst Xl at the time of his last illness. He was due to be Chairman of the Loughborough University Students Cricket Club, and in the two months before his final illness, he had skippered the Club’s Second Xl to promotion from their league. Some three weeks before his death, he had learned that he had been elected as a full playing member of the MCC, following in the footsteps of his father and his brother Tom. Rob was also an active member of the Colchester Golf Club, where he played off a handicap of five, and had also represented Colchester Rugby Club and Colchester Hockey Club.
Rob’s family has a strong interest in the performing arts, as well as in sport. Rob’s mother, Lorraine, for twenty-five years ran her own performing arts school in Colchester, the Lorraine George School of Dancing and Performing Arts. In addition, Rob’s middle brother, Sam, is Head of Music at the Mulberry Academy in Shoreditch, as well as being a talented composer, song-writer and performer in his own right.
Because of these major influences on his life, Rob wanted the RGF Foundation to be able to help all young people with the right commitment and/or ability – not just those from families financially able to support them – to be able to follow their dreams in these areas, and this is what we hope to be able to do.