The government’s duty is to ensure that people who need it most will get additional financial support. This entitlement comes in the form of benefits and tax credits which are provided to those who meet certain criteria.
Generally, benefits and tax credits are available to you if you are:
- Disabled or unwell
- A parent or pregnant
- Out of work or on a low income
- A carer
There are many types of benefits, and those you are eligible for can depend on many different things. You can find out more about benefits in one of our leaflets:-
One of the biggest factor which influences patients’ (and carers) lives other than treatment and transport is the constant battle to attain benefits. These range from Personal Independence Payment (PIP) and Employment and Support Allowance (ESA) through to the less common benefits.
When applying for PIP many patients believe they are unfairly failed, and it appears that assessors lack the knowledge, experience, and skills to understand how kidney disease can impact on patients' functional abilities. It is reported that assessors lack the medical expertise to understand what kidney disease is like, the problems it causes or the impact it has on patients’ lives.
The impact of dialysis, multiple hospital visits, and the use of drugs are some issues kidney patients face that are often ignored by assessors. Some kidney patients can often need help with the most basic of human needs, such as eating, washing, dressing and simply moving around, yet will not be accepted for PIP or ESA.
Home dialysis patients in particular are frequently underscored as the full extent of the treatment is not understood. These patients often initially lose out on an 'enhanced' or 'standard' rate of care altogether. Many patients require support to manage risk throughout the treatment time. Beyond that time, help is required for managing supplies, medication, diet, transport, meals and emotional support in particular. The complexities of managing life with kidney failure, such as the fluid and dietary restrictions, and the demands of renal replacement therapies.
Patients who have used our advocacy service have said that assessors' reports contained inaccuracies, or even lies. Assessment reports often bore no relationship to the actual assessment, and some reports had seemingly been cut and pasted, presumably using stock statements. For example one report described a male patient's ability to "brush his hands through his hair", whereas in reality he was bald. Another case involved a claimant being pressured to accept a 'deal' before an appeal, even though they stood to receive a better rate if the appeal was completed.
When an assessment report is completed which suggests that a claimant can do things that he or she knows they can not to, the claimant goes to appeal. The first step is a mandatory reconsideration, followed by a tribunal hearing. Similarly, when a report comes back with statements that are untrue, usually regarding what the claimant says the do or what they did or said during the assessment, claimants are likely to want to appeal any decisions made on the basis of such information.
People sometimes do not seek help with their claim until they have already been turned down, as many people initially expect that a reasonable assessment would give them an award. When this doesn't happen, they realise they need help.
One patient who is undergoing dialysis spends most of his day in a wheelchair, receives 24-hour oxygen, and has neuropathy - but still received no PIP award.
Help from our advocacy team
Our advocacy team have direct, personal experience of kidney disease and its treatment, and believe that this experience, insight, and compassion contributes to successful outcomes with the patients we support. As a charity, we are delighted to assist patients in any way we can, such as by completing applications, writing letters of support and attending appeals where possible.
From our own research surrounding 21 recent cases, only two people were initially awarded standard rate daily care at the initial assessment. After appeal this increased to 13 people being awarded at the standard rate, with a further six awarded the enhanced rate. Another sample of 17 claimants who were all denied mobility award at initial assessment went on, after appeal, to see six claimants receiving a standard award and seven claimants receiving an enhanced award. On average, claimants gained more than six additional points at appeal than at initial assessment.
Continued assistance from medical and psychosocial support teams and GPs, who are able to provide evidence to support claimants' appeals, has proved to be invaluable. In a number of cases, we also seek the support of sympathetic MPs who can assist in some of the issues our patients face, such as housing. We contributed to a recent DWP consultation, which highlighted the concerns addressed above. We hope that our voice, and the voices of other charities, are given weight and listened to. We have previously offered to provide training for assessors and we remain willing to do so, out of duty to the patients we support. Helping patients to attain economic support through benefits remains a priority of ours, as without economic support, the burden and struggle that many of our patients and carers face is made all the more difficult.