A response from Spina bifida Hydrocephalus Information Networking Equality - Shine

Transcription

1 Personal Independence Payment (PIP) Assessment: second independent review call for evidence A response from Spina bifida Hydrocephalus Information Networking Equality - Shine September

2 1. Introduction Established in 1966, Spina bifida Hydrocephalus Information Networking Equality - Shine is an independent charity working across England, Wales and Northern Ireland to support individuals with spina bifida and/or hydrocephalus to overcome challenges and achieve the best for them and their families. Shine is the largest organisation working in this field in Europe. We are a membership organisation of over 11,500 individuals living with spina bifida and/or hydrocephalus and a community of over 75,000 members, families, friends, and professionals, sharing achievements, challenges and information on living with hydrocephalus, or spina bifida, and related issues. The views expressed in this response are as a direct result of consultation with: Shine Members Shine s team of Support and Development Workers Shine would also welcome the opportunity to be directly involved in further work on this issue. 2. Shine s responses Q. In your experience what types of further evidence do claimants send in as part of their claim? A. Having canvassed our members, we find that the majority of people are not aware of the importance of the need to provide supporting evidence. It is only at the mandatory reconsideration stage, or the appeal stage, that they are made aware of the need to send in evidence such as Doctors (GP) letters, reports from Consultants and other medical professionals, Care Plans, letters from family/informal carers and supporting information provided by their Shine Support and Development Worker. It may assist both claimants and Decision Makers if the section on page 5 of the PIP claim headed What you need to do Bullet point 4, could be made more prominent, by being underlined or written in coloured text, as we are aware that many of our members are not aware of the importance of the need to provide relevant evidence with the claim form. 2

3 Q. In your experience what further evidence does Atos/ Capita request on claimants behalf? Is this requested on time and used appropriately and fairly? A. Having consulted with our members, Shine cannot find any examples of Atos/Capita requesting evidence on a claimant s behalf. Where Shine members have submitted their own evidence, they report that this is often ignored or the assessor s evidence is preferred without an explanation of the reason for this. Q. Is it clear what further evidence is being asked of claimants? Please briefly explain your answer. A. As already stated, Shine cannot find examples of Atos/Capita or Decision Makers requesting further evidence. Q. From your understanding, when claimants submit their claim how important do they think it is to submit further evidence? Please briefly explain your answer. A. In Shine s experience, our members do not consider how important it is to submit further evidence until they consult one of our Support and Development Workers for assistance with completing the claim form. Q. Are there any barriers for claimants in providing further evidence? Please provide examples. A. Shine s members face significant barriers to providing further evidence. For example, GPs refusing to provide reports without payment. Our members efforts to obtain additional evidence are complicated further by the fact that, while they require assistance with their daily living tasks and moving around, they are, essentially, healthy or at least their conditions are stable. As a consequence they may not visit their GP or require a hospital consultation. However, the opposite is also true in that many of our members lose contact with medical Specialists, Physiotherapist or Social Worker during periods of transition, particular from childhood to adult services. Therefore, despite being in need, they do not access the services required and cannot call on those services for additional evidence. Shine also finds that, as advisers to our members, it is now impossible to speak to the PIP case manager when we contact the PIP claims line to discuss an individual claim. When Shine staff have telephoned to discuss an individual claim, the calls are never transferred to the case manager. Instead, Shine s staff are advised by the receptionist that the case manager will call back within 5 days - this does not happen. With DLA claims, it has always been possible to speak to the person dealing with an individual claim, often enabling issues to be resolved without the 3

4 need for a claim to be decided at a tribunal hearing. It would be extremely helpful if DWP could consider providing a PIP Helpline to be used by advisers only. Q. In your experience, when claimants go through the appeals system do they submit further evidence at this point? Why? In Shine s experience, our members are likely to submit additional evidence, where available, while going through the appeals system but only because they are made aware of the need to do so at the appeal stage. Q. Are you aware of technology that DWP should consider using to improve the PIP data collection process? Please provide examples or suggestions. A. Decision Makers do not appear to have access to paperwork relating to the claimant s most recent DLA award. If this information were available it could possibly assist the Decision Maker to come to a more informed decision on the PIP claim. Q. Are you aware of any specific ways that DWP could share information gained from the PIP assessment with other organisations to improve health and care services? Please provide examples or suggestions. A. No. Q. In your experience, how effective are current PIP IT systems in delivering the PIP claim process? Please provide examples. A. Shine members report that they have lost entitlement to PIP due to DWP losing claim forms or additional evidence or telling claimants they have not returned them as requested, only for them to be found at a later date. This indicates that the system for logging the receipt of claim forms and additional evidence, whatever that might be, is somewhat lacking. Q. From your experience, how could the PIP claim process be improved? Please provide examples or suggestions. A. Based on consultation with our membership, Shine has a number of serious concerns about the PIP claims process. These range from reports from our members that assessors have little knowledge about the conditions Spina Bifida and Hydrocephalus. Members report being asked questions like How long have you had Spina Bifida? What does congenital mean? This demonstrates a fundamental lack of understanding and calls into question the assessors ability to properly assess our members. 4

5 We are also concerned that, when additional evidence is provided, it is either ignored or it is unclear why a Decision Maker preferred the assessor s report over the additional evidence. Further, there seems to be an inconsistent approach to arranging the setting of the assessments our members go through. Some people are visited in their own homes while others have to attend an assessment centre often some considerable distance away. For example, Shine is aware that one of our members, who is a full time wheelchair user and is reliant on public transport, recently had to make a 64 mile round trip, in Cornwall, to attend her assessment. Shine is also concerned about the length of time assessments take. We have examples of assessments taking over ninety minutes to complete. This can be very stressful to those with, in particular, Hydrocephalus because their concentration and ability to absorb information can be impaired. Furthermore the length of time it takes to make a decision needs to be addressed since many of our members are left with weeks or months of uncertainty while their claim is considered. Q. From your experience, what impact do awards of PIP have on claimants ability to stay in, or return, to employment? A. PIP is a vital tool in allowing our members to, in particular, retain employment. This is especially true for those that cannot access public transport to get to and from work. Many of our members use PIP to access the Motability Scheme to obtain a car, wheelchair or scooter that allows them to get to and from work. Q. How does the PIP process compare to similar assessments (e.g. ESA, an occupational health assessment)? A. In Shine s members experiences, no assessment process can adequately capture the true picture of what it means to have Spina Bifida and/or Hydrocephalus. Q. In your experience, what are the reasons for people making an appeal to Her Majesty s Courts and Tribunal Service (HMCTS) and what is their experience of this process? Please provide examples. A. Shine s members appeal decisions because they do not agree with the decision. Many of our members have difficulty with their cognitive function, and struggle to understand the whole appeal process, needing assistance to prepare for an appeal. For example, a member with limited walking ability might appeal a decision to award them the Standard Rate for moving around where they had received the Higher Rate Mobility Component of DLA and were accessing the Motability Scheme. Also, we have examples of members appealing decisions due to the loss of Passporting 5

6 such as Carers Allowance and Tax Credits. Some members appeal on the grounds that the award is for a limited time when their condition is not going to improve. Others appeal on the grounds that awards do not reflect the extent of the help required with getting around or carrying out daily living tasks. Q. Since the first PIP Independent Review, DWP has implemented a number of the suggested recommendations. In your experience, how have these changes altered the experience of people going through the PIP claim process? A. Shine s members do not recognise any qualitative improvement in the PIP claiming process overall. Q. Do you have any further comments regarding the PIP assessment process? A. As it is now apparent that claimants will be reassessed for PIP on a regular, ongoing basis,(as we understand that there will no longer be lifetime awards of PIP) we find that the whole process is expensive to operate and very stressful for disabled people. When a person has a permanent neurological disability, such as Spina Bifida, this should result in an indefinite award being made. Thank for affording Shine the opportunity to contribute to this review. We look forward to the outcome. If you require any further information, please contact Support and Development Worker, Bryn Roberts on bryn.roberts@shinecharity.org.uk. 6