2. Background

2.1. Every day 10 families are told their child has cancer. Usually treatment begins straight away, but so do the side-effects of this treatment and the extra expenses families’ face following the diagnosis. And these costs, like the side-effects, will persist for the full duration of the child or young person’s cancer treatment, although it is in the first few weeks after diagnosis when the initial financial crisis hits as the patient is required to spend a significant amount of time either at hospital for tests and clinic appointments or as an inpatient.

2.2. A 200 7 study found that 83% of families incur significant extra costs associated with their child’s cancer treatment with 68% of families experiencing worrying financial difficulties following diagnosis. [1] This is coupled with parents often cutting back on working hours to spend more time caring for their child (9/10 parents surveyed do so), leading to decreased income. Despite this, DLA at present can be the only additional support families receive and the delay in receiving the benefit, both because of the existing qualifying period and processing time, already presents a challenge for most families and so doubling this time period will create even more hardship. Usually the children and young people with whom we work are eligible for the higher or middle rate care allowance and higher rate mobility allowance, demonstrating a high level of need.

2.3. We are concerned that the current proposals are based on an assumption that length of illness is related to level of need – patently not the case for children and young people with cancer who will usually have the highest level of need in the first few months after diagnosis. Specifically the proposed extension to the qualifying period will discriminate against those with sudden-onset and fluctuating conditions such as cancer and is likely to remove eligibility altogether for those with shorter treatment periods.

3. The impact on 16-18 year olds

3.1. We are pleased that the Government has recently announced and reaffirmed in the recently published DLA consultation response that the reform of DLA for under 16s will be taken forward separately and will be subject to a further public consultation and Parliamentary scrutiny. This is important to ensure that whatever system is introduced recognises the unique needs of children with long-term health conditions and impairments.

3.2. However, the Government appears intent on distinguishing between those of working-age (16-64 year olds) and those under working-age (under 16s). Not only does this distinction risk a system where the unique needs of young people are not recognised by the system but this appears to jar with the Government’s own plans to raise the participation age , as well as running contrary to the vision set out in the recently published SEN and Disability Green Paper for a coordinated system of assessment and support from birth to age 25. The plans to raise the participation age will mean the majority of 16-18 year olds will still be in education or training, however the Personal Independence Payment system will categorise them as ‘working age’. [1]

3.3. In terms of the services for teenagers and young adults with cancer (TYAs, 16-24 year olds), best practice NICE guidance recognises that: "very different issues arise depending on the age and maturity of the individuals whose needs are being addressed. Childhood and adolescence is a time of enormous change, physically, psychologically and socially, and this influences the different patterns of malignancy seen, their pathological behaviour, response to treatment and eventual outcomes. " [2] The guidance therefore recognises 16-24 year olds as a d istinct group with specific social, psychological, and educational needs and details how services should best be organised to meet the needs of this group which is then verified as part of the peer review process. I t is therefore critical that that the welfare system , on which many 16-24 year olds with serious health conditions rely for support, also recognises this distinction instead of relying on an outdated classification of working-age and non working-age. [3]

3.4. We would also highlight that t he UN Convention on the Rights of the Child, ratified by the UK G overnment in 1991, states that a child "means every human being below the age of eighteen years". The consultation document’s impact assessment states that "we recognise that many people who have become disabled earlier in life have had fewer opportunities to work or save for later life" – CLIC Sargent would argue that this applies to those aged 16-18. In addition, we do not believe th is impact assessment nor the Bill impact assessments at present captures the potential disadvantage that the new system will put on those aged 16-18 in particular.

3.5. CLIC Sargent would argue that the best way in which to meet the holistic needs of young people with health needs would be to align and join-up the various systems of support, as envisaged by the SEN & Disability Green Paper. [4] However, we recognise that creating a distinction in the disability benefits system for 0-16s, 16-18s, and 19-24 year olds may not be viable in the current financial climate. We do believe, however, that it is reasonable to argue that the system should make particular provision for 16-18 year olds, most of whom will still be in full-time education and financially dependent on their parents when PIP is introduced. Otherwise this group of vulnerable young people risks being some of the first to experience the PIP system which is unlikely to meet their unique needs given it is based on the needs of working age adults.

3.6. At present, CLIC Sargent is working with 489 16-18 year olds with cancer. Whilst we recognise that making age-appropriate provisions for this age group will cover those with other eligible health conditions and impairments, we do not believe this will impose a significant additional cost burden, particularly as this group of vulnerable young people would be covered by the adult system anyway were no changes to take place. Department for Work & Pensions data suggest s that there are currently 52,190 DLA claimants aged 16-17; there is no data for those aged 18 but we would posit that this would be around 30% more, bringing the estimated total to around 69,586. [5] On the other hand, we believe there is much to gain by putting in place an age-appropriate system for vulnerable young people aged 16-18. We would argue specifically that the qualifying period must not be extended for 0-18 year olds, to reflect the additional costs and needs of a family looking after a child or young person with an eligible health condition or impairment.

3.7. Furthermore, we would also draw attention to the fact that the welfare system at present is inconsistent in its definition of children and adults. For example, Jobseeker’s Allowance and Income Support can usually only be claimed by over 18s. [6] We are therefore concerned that if the DLA / PIP system makes a distinction between those under 16 and those over 16, those aged 16-18 may fall through the gap. Case study evidence (one example included below) from our social workers suggests that young people with cancer are already treated less favourably than children with equivalent conditions and needs, with a much greater proportion having to appeal to the get amount to which they are entitled, and our fear is that this will be exacerbated under PIP.

3.8. We would also urge caution on having two different systems for those under 16 and over 16 as this will create a particular cliff-edge for those young people with health needs and impairments during an already difficult period of transition. It is felt that at present the current DLA system works quite well in this regard.

3.9. We would urge committee members to highlight these issues to Ministers during committee stage and urge them to consider the reform of DLA for 16-18 year olds alongside the reforms for under 16s and, at the very least, to ensure that 16-18 year olds who are still in education are not treated the same as other adults who are much more likely to have financial independence. These issues could be discussed under the auspices of Clause 91 which gives the Secretary of State the power to make regulations, with a particular reference to different provisions for persons of different ages (4).

4. Extension of the qualifying period

4.1. Clause 79 of the Welfare Reform Bill defines the ‘required period condition’ which an applicant must meet to be eligible for Personal Independence Payment. This is a qualifying period of 6 months and a prospective test of 6 months , i.e. an applicant must demonstrate they have had needs for 6 months and will continue to do so for a further 6 months.

4.2. This change will effectively double the current qualifying period of three months and CLIC Sargent is particularly concerned regarding the potential impact on those with sudden onset conditions, including cancer. Because those with sudden onset conditions , such as leukaemia, do not have a period of symptoms before diagnosis, their eligibility for the benefit will be counted from their diagnosis which could mean they do not receive any financial support until six months into treatment.

4.3. The current qualifying period of three months is already problematic for young cancer patients and their families, and our fear is that doubling this will push many into poverty, particularly when DLA is often the only form of financial support available. Normally the first three months are the hardest for the child, family and / or young person to deal with as they cope with the diagnosis and treatment. In addition, r esearch has shown that increased costs are at their highest in the first year of treatment when travel to hospital, and time spent away from home, is at its maximum. [1]

4.4. A recent survey showed CLIC Sargent’s social workers believe that increasing the qualifying period in this way will lead to 9 in 10 of patients suffering financially and over 60% thought that all of their clients would suffer as a result of this change. One social worker told us:

"It is hard enough for everyone to wait for 3 months and now all will have to wait 6 months before getting any money. This is a large portion of treatment with no money. Also, often people can manage for a few months because they may continue to be paid from work for a while, have savings or be entitled to several months full sick pay from work themselves. By 3 months this has all but run out, they are struggling to cover mortgage, costs of treatment, childcare costs for other children etc and hopefully by then DLA will have come through. Under proposed changes I can seriously see people losing their homes while their child is on treatment because they won’t be able to stretch covering costs for 6 months."

4.5. Support sources such as the NHS travel costs scheme and Employment and Support Allowance, referred to in the Disability Living Allowance Reform consultation response as other options for support , are either means-tested or only available to people out of work. Cancer patients could be ineligible for these but could still be eligible for PIP which is a non-means tested benefit which people can apply for regardless of their employment status. Despite having an average round-trip distance to travel to hospital of 60 miles, [2] the only additional financial support that most families will receive in addition to DLA are financial grants from charities such as CLIC Sargent. [3]

4.6. Another of the arguments for the extension in the consultation response is to "align the benefit more closely with the qualifying rules for Attendance Allowance" which is the equivalent of DLA for those over 65. CLIC Sargent would point out, however, that whilst Attendance Allowance has a qualifying period of six months, there is no prospective test.

4.7. CLIC Sargent is therefore working with Macmillan Cancer Support to propose an amend ment to clause 79 of the Bill as follows:

Amendment: To waive the qualifying period for PIP for anyone who experiences a sudden onset physical or mental condition

Clause 79, Page 57, line 6, at end insert –

";or

(c) for persons who experience a sudden onset physical or mental condition, whether, as respects every time in the next 12 months, it is likely that if the relevant ability were to be assessed at that time that ability would be determined to be limited or (as the case may be) severely limited by the person’s physical or mental condition.

(2) Regulations must make provision for determining, for the purposes of subsection 1(c) above, what persons are considered to "experience sudden onset physical or mental condition".

4.8. The purpose of this amendment is to ensure that people with a sudden onset condition can apply, and be assessed, for PIP as soon as their need arises. People with sudden onset conditions would still have to meet the eligibility criteria set-out by the assessment and demonstrate that their physical or psychological limitations are likely to last for one year. Therefore only those eligible will receive PIP and periodic reviews would make sure that people receive it only for as long as they need it.

4.9. Cancer can be a long term condition but support is needed from the outset . PIP is for people with support needs associated with long term disability or illness. This amendment therefore incorporates the Government’s proposal that PIP should only be available for people who have total period of need of one year. [4] Whil st cancer patients frequently experience long-term effects as a result of their cancer, treatment or both, the time during initial treatment can often be when needs and costs are at their greatest. This is one of the key issues that was raised in the joint letter to Iain Duncan-Smith MP signed by 30 cancer charities which received significant media coverage and debate during the Bill’s Second Reading.

April 2011