CLIC Sargent is the UK's leading children's cancer charity, providing care and support services to children and young people with cancer across the UK.


Happily, for children with cancer treatment tends to begin straight away, but this also means that the impact on families of extra costs associated with a cancer diagnosis also start immediately. This includes travel to specialist centres which can be far from home; accommodation; childcare for other children; clothing as patients' bodies change; and food. On top of this, one or more parents might have to give up work or change their hours to care for their child with cancer.


At this time of extreme financial and emotional stress, benefits can be essential to making ends meet. Amongst the families that CLIC Sargent works with, there is a great deal of inconsistency in the experiences which they have in applying for, and receiving, benefits to support them.


All too often, families find that the application process is so cumbersome as to be prohibitive. The decision making process can also be insensitive to individual needs and appears to have little understanding of the wide range of different cancers and how these might affect children and young people. When it comes to appeals, patients and their families can find that the process is unclear and inconsistent, and it is too long a process.


CLIC Sargent knows of two main benefits where children and young people with cancer can experience difficulties with the application process (DLA and ESA), and our comments on these are detailed separately below.


It is also important to note that there are young people who have had good experiences with ESA and DLA; having been immediately referred to the correct part of the benefit, and who have received their benefit payment swiftly. It is the inconsistency in these experiences and the inflexibility of the service which need addressing.




2.1 Disability Living Allowance

Many of the families that CLIC Sargent works with receive Disability Living Allowance (DLA) to give them financial support at the time in their lives when they need it most. The families we work with tell us that there are several difficulties in both the application process and the decision making process when it comes to receiving this key benefit. There are three key issues about which CLIC Sargent is concerned.


Firstly, DLA needs to be simplified so that the application process is not so complex. The form, in particular, can be so daunting as to prohibit parents from applying for this important benefit. The content of application form can also be confusing and is sometimes not relevant.


Secondly, there is a lack of understanding amongst decision makers of the wide range of cancers which can affect children and young people, and the impact of these diseases on children and young people's lives. This can mean that families experience insensitivity and inappropriate questioning on the part of decision makers who are not given the education and guidance they need to understand this complex disease area.


Thirdly, CLIC Sargent is concerned that the twelve week waiting period before a benefit can be paid out is inappropriate for families affected by childhood cancer. For these families, the financial impact of cancer is immediate and may not last as long as other disabilities and illnesses. The first few months after a child's diagnosis are crucial and this is when families most need the support of benefits like DLA.


CLIC Sargent is delighted that the Department for Work and Pensions (DWP) is currently working to revise the DLA application form for children, to make it less cumbersome and more responsive. Their work towards improved, comprehensive guidance for decision makers on the range of diseases affecting children and young people will also help to ensure better consistency and consideration in the decision making process. CLIC Sargent is pleased to be supporting the DWP in these areas of work.


2.2 Employment & Support Allowance (ESA)

The teenagers and young adults that we work with have encountered several difficulties in the application and decision making processes for ESA, and these are outlined in further detail below. These include:

Being incorrectly advised to apply for the work component;

The lengthy telephone interviewing system;

Waiting to receive benefits.


2.2.1 Work component

It is not uncommon for young people with cancer to be advised to apply for the work component of the benefit. This component is of course not applicable for people who are undergoing chemotherapy or whose diagnosis is terminal.


For example, one young woman applied for ESA with the help of her CLIC Sargent Social Worker, and clearly stated on the form that she had terminal cervical cancer and that she could provide a DS1500 form which she had used for DLA applications to clarify her position.


She started being paid ESA and didn't hear any more until she was sent an appointment for an interview to help her get a job. At this point, it became clear that this young person hadn't been put straight into the support group as should be the case with terminally ill people, but instead was due to have a full assessment over the coming eleven weeks. She had been told that she had a month to live at that point.


The ESA advisers explained to the young woman that they were not in a position to cancel the workplace interview, but that they would postpone it for three months and then review it again at this time. This was clearly not an appropriate decision for someone who was not expected to live for these three months, and caused her family a great deal of unnecessary anxiety.


Another young person was incorrectly told to apply for the work part of the benefit, which subsequently took four months to be processed. After four months he was told he needed to begin another application because he had applied for the work part and shouldn't have done so. This was particularly hard for him as he was unable to receive any housing benefit while he was not in receipt of other benefits. This situation has caused this young man a great deal of financial and emotional stress as he is without an income until he receives ESA.


2.2.2 Telephone enquiries

There is a major issue with the application process for ESA, where young people are required to go through a 45 minute phone interview before an application can begin. This is particularly challenging for those young people who have a terminal diagnosis.


We know of several young people with cancer who do not have landline telephones and who find themselves stuck in long phone queues during the daytime, which builds up big mobile phone bills - one young woman reports using 10 credit before getting cut off. This comes at a time of increased financial costs for these young people and their families. In addition, some young people find that the line goes dead while they are waiting in a queue.


There doesn't currently appear to be any alternative to this system which might offer a quicker, more appropriate route to applying for ESA. A downloadable form would offer an alternative - perhaps something similar to the DS1500 which is used for DLA applications.


2.2.3 Young people in education

CLIC Sargent knows of patients who are taking time out from their university courses but who are denied ESA because the legislation says they must have abandoned their course altogether. This presents already demoralised young people with having to choose between the prospect of a relatively easy return to education after treatment and a period of recovery and having something to live on.


2.2.4 Benefits staff

The young people that CLIC Sargent works with can encounter confusion and a lack of understanding amongst Jobcentre Plus staff, and ESA doesn't seem to be explained very well. Trying to get information from the Benefits Agency regarding the progress of applications has been similarly difficult.


There is often conflicting advice, and there appears to be inadequate knowledge of what impact a cancer diagnosis can have on a person's ability to work. Staff might benefit from greater training and awareness of cancer and of ESA.


2.2.5 Application process & waiting times

Many young people become very anxious and angry when they are asked to complete an additional, bigger questionnaire after they have already gone through the application process and begun receiving payments. This is often information which has already been given, so this can be confusing.


There appears to be a good deal of variation between different Jobcentre Plus branches as to how long it takes to get through the system.


We know of one young man who has been waiting since March to receive his benefit. He has made several phone calls to chase his applications but has not received the information and advice he needed, and has in fact received different advice from different advisors when calling.


2.2.6 Parent carers

When a child is diagnosed with cancer, their treatment tends to begin immediately, and is likely to take place in a specialist treatment centre, away from home. Parents of a child with cancer therefore often have to change their working hours or give up work to be with their sick child.


Benefits like ESA can make a real difference to parents caring for a child with cancer. However, currently parent carers only qualify for the work component of ESA which does not suit their needs as they are not always in a position to continue to work.


The parents we work with can experience real challenges in applying for ESA, and there are large disparities between different families' experiences. For example, we know of two sets of parents whose children had the same diagnosis, but whose experiences were very different. The first attended an interview and were told at that time that they would be getting the benefit and wouldn't have to attend a review meeting. The second attended an interview and although the interviewer appeared sympathetic, they were later informed they had 0 points on their application.




3.1 How does the appeals system work from the claimant's perspective?

The process itself is unclear and inconsistent. Parents can make several calls to the DLA regarding the process before they begin to understand where to start and what steps to take.

Communication from the DLA service is inconsistent and the customer service representatives can lack empathy with families

The length of time of review is extremely long (eleven weeks) and lacks progress updates.

Some of the families that CLIC Sargent works with opt not to go through the appeal process due to the length of time and hassle it can cause.

If families decide to go through with the appeal process, they may be required to duplicate the application that was completed originally, which is a long and difficult process to repeat. However, there are inconsistencies within this as some families will not need to recomplete the form and some will.


3.2 How has the introduction of the Administrative Justice and Tribunals Council (AJTC) impacted upon claimants' experience of the appeals process?

CLIC Sargent's social workers, who work closely with families in applying for relevant benefits, were not all aware of this council being in place or what its function is.


3.3 Is the timeframe of appeals reasonable?

Parents have been informed that they will wait up to eleven weeks to receive a response regarding their appeal and can find it extremely difficult to track the process of the appeal.


Considering that families will have already waited 30 working days for their original application to be processed, and then another few weeks to decide on whether or not they wish to appeal, and then another few weeks for the appropriate paperwork to be sent out to the family, waiting a further eleven weeks for an appeal to be processed is an extremely long and difficult time for our parents who are caring for a child or young person who has a cancer diagnosis (and significant health, care and mobility needs).


The impact of families affected by childhood cancer of having to wait a considerable time for their appeal to be processed is huge. A long wait for a benefits decision is particularly hard if one or both parents has had to give up work or change their working patterns to care for their sick child, for example.


3.4 Is sufficient support available to appellants during the appeals process?

As mentioned above, the families that CLIC Sargent works with can face significant difficulties with tracking down the progress of their appeal and actually speaking to someone within the DLA service about how their case is progressing. There is little or no information made available before or during the appeal.


Families can feel that any follow up calls they make regarding their appeal are unimportant and the standard response that they receive tends to be that 'things are in process' with no further information given on estimated timelines, outcome, or further communication.


In addition, when families receive the 'appeal bundle' this can cause further distress as they can see medial reports and the comments of the decision makers.


September 2009