Memorandum submitted by National Aids Trust (NAT) (DM 19)

 

Summary of recommendations

Recommendation: Benefits decision should be streamlined so people receive a decision in a timely manner. If there are problems with a person's application they should be contacted immediately so this can be resolved.

Recommendation: It should be easier for people to access Crisis Loan support; delays in accessing this are causing serious hardship. The maximum amount available to people through Crisis Loan support should be increased.

Recommendation: Benefits claimants moving from one type of benefit to another (for example from JSA to ESA) should not be left at any time without financial support. They should not be expected to rely on Crisis Loans at this time.

Recommendation: DWP staff need more training on their own computer systems to speed up the benefits application process.

Recommendation: DWP staff need additional training in relation to HIV so they have a proper understanding of the implications of the virus (both around treatment side effects, mental health, social stigma and the need to safeguard clients' confidentiality).

Recommendation: The decision making process should be simplified and steps should be taken to ensure people who do not have English as a first language can understand the process (for example, jargon should be avoided and plain English standards adopted).

Recommendation: DWP should avoid wasting time and resources and avoid putting claimants through unnecessary stress by ensuring official errors are addressed and that cases are not unnecessarily taken to tribunal.

Recommendation: Any further review of the DLA for people living with HIV should take note of 'lessons learnt' from the previous review. A wide range of HIV organisations should be involved in the review process from the outset so they have the opportunity to support service users going through the review process.

Recommendation: DWP should consider reviewing the DLA forms sent to patients' doctors and the DLA award letters to ensure both that forms are completed correctly and that claimants understand why a DLA decision has been reached.

Recommendation: The appeal process should be reviewed and steps taken to address the current lengthy delays claimants face; appeals when claimants have no benefits at all should be fast tracked.

Recommendation: Funding to advice services should be increased to ensure all claimants can access independent advice and representation during the appeals process.

 

1. Introduction

 

1.1 NAT (National AIDS Trust) is pleased that the Work and Pensions Committee is holding an inquiry into decision making and appeals in the benefits system and welcomes the opportunity to submit evidence.

 

1.2 NAT is the UK's leading independent policy and campaigning charity on HIV. NAT develops policies and campaigns to halt the spread of HIV and improve the quality of life of people affected by HIV, both in the UK and internationally.

 

1.3 NAT is very grateful to the following support organisations that provided us with evidence which forms the basis of our response: Body & Soul, Camden Citizens Advice Bureau Service, DHIVERSE, George House Trust, Positive Action Aldershot, the Terrence Higgins Trust and Waverley Care. In addition a number of individuals living with HIV contacted NAT to share their experiences and concerns about the benefit systems. These conversations are also reflected in this response.

 

1.4 This response is structured around the inquiry question headings on decision making and appeals.

 

2. Decision making

How effective is the decision making process?  Could it be improved, if so how?

2.1 There was universal agreement from HIV organisations contacted by NAT that the current decision making process could be improved. Much of the concern was related to the time taken for an application to be processed. The case studies below provided to NAT from Body and Soul illustrate this effectively:

Mercy was granted leave to remain in the UK in April 2009 and immediately applied for Employment Support Allowance (ESA) - now six months later, she is still waiting for an outcome from her application. Body and Soul contacted the Department of Work and Pensions (DWP) to find out why there had been a delay. Initially they were told that the Department had all the relevant papers but that the claim had been outsourced to another office in Birmingham as they were too busy to process all the claims. Body and Soul then contacted the office in Birmingham who told them they would not respond directly to clients, any enquiries have to go through the London office in the form of an email. An email was sent but nothing was heard for weeks. Eventually Body and Soul were told that the Department could not process the claim as they did not have the correct medical certificate. Body and Soul assisted Mercy in submitting the medical certificate but they are still waiting for the outcome of her application. Whilst waiting for her application to be processed Mercy initially survived on support in the form of Crisis Loans but she was then told she was not eligible for any further support. She is now relying on handouts from friends as well as financial assistance from Crusaid, an HIV emergency fund for people living with HIV. The stress of the process has seriously affected Mercy's health.

Paul's story is another example of someone who has suffered as a result of inefficiencies within the benefits system. In July he applied for ESA. Paul was concerned about the delay in receiving a response and so Body and Soul contacted DWP to find out if there was a problem. It took a month for DWP to respond to say they were unable to tell if Paul had applied for ESA or not as there were problems with the computer system. They suggested making a second application. Body and Soul assisted Paul in making a second application in August and are still awaiting a response. In the meantime Paul has attempted to get emergency support through the Crisis Loan system but has been unable to get through to them. This has had serious consequences for his health. Adherence to treatment is very important for people living with HIV; Paul's medication must be taken with food but he has faced such financial difficulty that he has not always been able to purchase food and as a consequence has not been taking his treatment.

Both Paul and Mercy were left confused and distressed by their experience of the benefits system and even with the assistance of Body and Soul it has proved difficult for them to access the support they need.

 

2.2 The over-riding concern raised by support organisations for people living with HIV is the lack of transparency in the system and the serious delays people face. In addition many people noted that staff working within the system had a lack of knowledge of the processes involved.

Recommendation: Benefits decision should be streamlined so people receive a decision in a timely manner. If there are problems with a person's application they should be contacted immediately so this can be resolved.

Recommendation: It should be easier for people to access Crisis Loan support; delays in accessing this are causing serious hardship. The maximum amount available to people through Crisis Loan support should be increased.

2.3 Another area where people felt the process could be improved was around the gap in support when people move between different types of benefits. Several organisations gave examples of clients who had come off Job Seekers Allowance (JSA) only to face a lengthy delay before accessing ESA. In the meantime they were provided with no means of support apart from the Crisis Loan system, and many had difficulties accessing this.

 

Dorothy is living with HIV and expecting a baby. Due to complications with her health and pregnancy she was told to move from JSA to ESA. However, the process of moving from one benefit to the other meant that for six weeks she received no support. This caused her a lot of distress, jeopardising both the baby's health and her own. This is particularly concerning given the need for HIV positive mothers to adhere to treatment to prevent mother to child transmission of the virus.

 

Recommendation: Benefits claimants moving from one type of benefit to another (for example from JSA to ESA) should not be left at any time without financial support. They should not be expected to rely on Crisis Loans at this time.

 

Are there sufficient numbers of decision makers and is the training they receive adequate?

2.4 The amount of time it takes for people to receive a decision suggests that there are insufficient decision makers. In addition, the long delays are also contributed to by the lack of training, not only for decision makers but for other staff working within the system. One DWP staff member explained to an HIV support organisation that they had had insufficient training on the new computer systems which was causing serious delays.

Recommendation: DWP staff need more training on their own computer systems to speed up the benefits application process.

 

2.5 Several organisations highlighted a lack of understanding by decision makers about HIV: "We are still hearing stories of bad practice from clients attending medical examinations and dealing with unsympathetic doctors with little or no knowledge of HIV and related issues.  Because of the stigma associated with HIV, people have difficulty discussing and explaining their conditions to doctors who they have never met before.   We also get reports that doctors are dismissive of answers."

 

2.6 The main areas where people felt DWP staff had an insufficient understanding of HIV were: a lack of understanding about the side effects of HIV treatment; insufficient understanding of the mental health implications of HIV; and a lack of understanding of the stigma associated with the virus (several organisations had experiences when a DWP adviser had refused to provide someone living with HIV with a private room to discuss their status, forcing them to disclose private information in a public space).

 

Recommendation: DWP staff need additional training in relation to HIV so they have a proper understanding of the implications of the virus (both around treatment side effects, mental health, social stigma and the need to safeguard claimants' confidentiality).

 

Is the decision making process clear to claimants?

2.7 There was a general consensus that the decision making process was overly complex and people were left confused by the system. HIV disproportionately affects black Africans, many of whom do not have English as a first language. The complexity of the system is even more overwhelming for these individuals. Many HIV support organisations spent significant amounts of time explaining the process to people living with HIV.

2.8 The need for decision letters to state clearly why a decision has been made was also stressed by several organisations. Organisations reported that the more important information for a client is often 'hidden in the body of the letter' and written in a way which is difficult for people to understand.   One agency had recently spoken to the ESA section of DWP to question why a client had been refused benefits, only to be told that the ESA staff could not explain why the decision had been made and the client would have to request an appeal to find out.  

Recommendation: The decision making process should be simplified and steps should be taken to ensure people who do not have English as a first language can understand the process (for example, jargon should be avoided and plain English standards adopted).

Is DWP effectively addressing official error?

2.9 This is an area where people felt that clients were unnecessarily going through the tribunal process when it would be very simple for DWP to acknowledge an official error. Nobody could give an example of a case where an official error had been acknowledged. Case studies like the example from George House Trust below were more common:

 

In a recent case George House Trust were supporting Michael who had worked for just four weeks before having to stop because of poor health. The 'linking rule' allows people to work for up to eight weeks; if they reclaim their benefit within that time they can resume their former benefit at the original rate, rather than make a fresh claim (this is a really important provision as it enables people with HIV who are thinking of going back to work to 'give it a go'). George House Trust wrote to the DWP twice pointing out that Michael was clearly entitled under the 'linking rule' to resume claiming his former benefits, asking them to review the decision. The Department persisted in taking the case all the way to tribunal. Michael had to wait months for the case to come to the tribunal, existing on the starter rates for benefits and to go through the completely unnecessary stress of the tribunal hearing. In addition this was a waste of expensive tribunal time and of specialist HIV community sector resources.

 

Recommendation: DWP should avoid wasting time and resources and avoid putting claimants through unnecessary stress by ensuring official errors are addressed and that cases are not unnecessarily taken to tribunal.

How well does the decision making process operate for different benefits (e.g. ESA, DLA and Housing Benefit)?

2.10 Several HIV organisations had concerns about DLA. Many issues were raised about the review of DLA awarded under Special Rules. The Special Rules provision of the DLA apply to individuals who have been diagnosed with a terminal illness and are reasonably expected to die within six months. Applications are fast tracked to the highest care component, rather than having to wait the usual qualifying period of three months for DLA. The Disability and Carers Service (DCS) decided to review all cases where an individual has been on DLA for more than three years in November 2007. NAT raised their concerns about how this review was carried out with the Minister for Disabled People. We were particularly concerned that the review was conducted in such a way that local HIV organisations were not given sufficient warning to set up local arrangements to assist people living with HIV going through the review. NAT hope that lessons will be learnt from this review in any future review going forward.

 

Recommendation: Any further review of the DLA for people living with HIV should take note of 'lessons learnt' from the previous review. A wide range of HIV organisations should be involved in the review process from the outset so they have the opportunity to support service users going through the review process.

 

2.11 Organisations also noted that the current DLA decision making process fails to take sufficient account of the side effects of HIV treatment and the mental health impacts of living with HIV. Several organisations reported that the outcome of DLA claims are "something of a lottery." People reported claimants with very similar circumstances receiving very different awards.

 

Recommendation: As stated above DLA decision makers should receive proper training around HIV to ensure that issues related to mental health and treatment adherence are given due consideration and that there is consistency in decision making.

 

2.12 There was a call to simplify the factual reports forms sent to patients' doctors for the DLA. The current forms can be confusing, which often means that they are not completed correctly.  Whilst the clinical information collected is important, there has been a call for the forms to include more questions on supervision and care needs, as well as additional guidance on how to complete the form.  

2.13 Organisations also felt that the DLA award letters do not give enough information on how the Decision Maker reached his or her decision on a particular case.  For example organisations had had clients that have provided a detailed description of their needs in their claim form as well as supporting medical evidence and then they receive a nil award letter that did not explain why (despite the information provided) the decision maker has reached that particular decision.

 

Recommendation: DWP should consider reviewing the DLA forms sent to patients' doctors and the DLA award letters to ensure both that forms are completed correctly and that claimants understand why a DLA decision has been reached.

3. Appeals

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

Is the timeframe of appeals reasonable?

3.1 HIV service providers highlighted their concern about the complexity of the appeal process. It proves time consuming to explain both the process and why people have been refused benefits (and often it is unclear even to the HIV support organisation why this is).

3.2 In addition people may be left without access to benefits whilst they await their appeal. The withdrawal of one type of benefit can then lead to the withdrawal of housing benefit which then causes the client a great deal of stress and anxiety as they have to provide additional information to the housing department to get this reinstated as this case study reveals. 

 

Peter is living with HIV and was in receipt of income support on the basis of ill health.  This was stopped although he was not informed of the decision to end his income support until he went to the bank to find he had no money. He spent the next eight weeks phoning different parts of the DWP to try to identify why his support had been stopped. As a result of the loss of his income his housing benefit was stopped, and he received threatening letters from his landlord.  DWP advised him to put in an appeal, but he was not told how to or given a date when he needed to appeal by.  He was also told to claim Employment Support Allowance (ESA), with no explanation given as to what this was or how to do this. Peter did eventually receive assistance, from Positive Action Aldershot to submit an appeal and he made a new claim for ESA.  His housing benefit was eventually reinstated. This process started in February this year and Peter's case finally goes to tribunal later in September. Throughout this period Peter's actual income has been reduced by approximately 40 per week, and he is now in more debt than he has ever been.

 

3.3 Organisations gave examples where the withdrawal of a benefit and the wait for the appeal process had led to complete financial breakdown for service users, who had been unable to pay debts. This then led to mental health problems and depression.

3.4 Many people have to rely on support in the form of Crisis Loans which have been found to be unreliable. Some people have exceeded the maximum amount available as a Crisis Loan and are relying on handouts from relatives. As recommended above, the Crisis Loan system should be easier to access, decision making around loans more reliable and the maximum amount provided to people should be increased.

Recommendation: The appeal process should be reviewed and steps taken to address the current lengthy delays claimants face; appeals when claimants have no benefits at all should be fast tracked.

Recommendation: As stated above, it should be easier for people to access Crisis Loan support; delays in accessing this are causing serious hardship. The maximum amount available to people through Crisis Loan support should be increased.

Is sufficient support available to appellants during the appeals process?

3.5 Support organisations identified a lack of funding for advice services to assist clients during the appeal process. As a consequences many advice services are not able to represent clients at tribunals. Several organisations raised their concern that claimants have to carry out appeals without independent advice or attend tribunals without representation.

Recommendation: Funding to advices services should be increased to ensure all claimants can access independent advice and representation during the appeals process.

September 2009