What impact are welfare reforms having on people living with MS in Scotland and how can this impact be mitigated? A focus group report

Transcription

1 What impact are welfare reforms having on people living with MS in Scotland and how can this impact be mitigated? A focus group report

2 Introduction In 2013 analysis from the Big Benefits Survey found that two thirds of people with MS felt more anxious about how they will manage their condition in the future because of benefits changes. Reasons given for this included the cumulative impact of welfare reforms on people living with MS and their experiences or concerns about two particular benefits: Employment and Support Allowance and Personal Independence Payment. In June and July 2014 the MS Society carried out four focus groups with people in Scotland affected by MS to gather their views and experiences of the benefits system and welfare reforms. These focus groups contributed to our evidence base on the impact of welfare reform on people living with MS in Scotland and to shape our work in influencing change on this issue. A total of 70 people took part in the focus groups which were held across Scotland, in Aberdeen, Greenock, Glenrothes and Inverness. Participants were sought from the MS Society s local networks and from widely advertising the events in local media, benefits advice agencies and medical centres. The focus groups followed the same format of presentations from expert speakers and then small group discussions around key questions in the focus group schedule. All comments were noted anonymously and have not been attributed to individuals. The MS Society hopes that this report and its recommendations will be useful for politicians, policymakers and the benefits assessment providers in their respective roles in creating and delivering a fairer benefits system. Background context More than 11,000 people live with Multiple Sclerosis (MS) in Scotland. MS is an incurable and complex long-term neurological condition that attacks at random.

3 Symptoms of MS are often distressing and debilitating and can include intense pain, problems with mobility and co-ordination, depression, fatigue, incontinence, and loss of vision. Life for a person with MS is unpredictable. Some experience periods of relapse and remission, for others it follows a progressive pattern from onset. Even those with relapsing-remitting MS typically experience increasing disability and morbidity. Most people are diagnosed with MS between the ages of 20 and 40, during some of the most important, formative and economically active - years of their lives. Only a quarter of people with MS who are of working age are employed, compared to three quarters of the wider UK population. Many people with MS can and want to remain in work, however for those who are unable to work, financial security is dependant on the ability to access appropriate benefits, including out-of-work benefits such as Employment and Support Allowance (ESA). Benefits are also vital for assisting with the additional costs of being disabled, which in turn help people to remain independent and in many cases, economically active. In 2012 more than eight out of ten people with MS said they were receiving Disability Living Allowance (DLA), which can be a vital lifeline for help with the additional costs associated with a disability including access to the Motability vehicle scheme, transport to appointments and paying for care and equipment. Welfare reform changes are having a huge impact on people with MS and causing stress, anxiety and financial hardship. The MS Society is seeing an increasing number of calls to our helpline about benefits and the impact of both the changes introduced to disability benefits) and the cumulative impact of welfare reforms. The impact is affecting people s financial security, their ability to remain socially active and indeed their health. The MS Society is committed to ensuring that people with MS receive the support they need to live fulfilled and independent lives. That is why we will continue to work with people with MS, other disability charities and policymakers to influence change on this important topic.

4 Findings and conclusions from the focus groups Many people with MS find the application forms complex to complete and too restrictive Many people with MS are affected by severe fatigue and by cognitive issues affecting their memory and concentration. Participants told us that their symptoms made it both exhausting and challenging to complete the forms. There were further concerns about how cognitive problems might affect how well people fill out forms or respond to questions in a face-to-face interview. As well as the complex nature and length of the forms, participants noted that the way questions were phrased made it difficult to fully describe the impact of their condition and symptoms on their life. Both PIP and ESA applications require applicants to describe their impact on an average day but MS is a fluctuating condition and what individuals can do cannot be so easily simplified. I can do all the things in the care component criteria of PIP like washing and dressing and cooking a meal but it takes me a hell of a long time and then I have to lie down. There doesn t seem to be a way to explain that so I think that will count against me. (Inverness participant) One good morning means a whole bad day the next. How do you explain that in a form? (Glenrothes participant) I mean, I can walk quite well on a good day, but what if that leaves me exhausted and that s me for the day? Should I still say I can do it? (Greenock participant) The forms are a nightmare. It s just box-ticking, repeat questions and nowhere to say what s actually important. (Greenock participant)

5 The application forms and guidance notes do not enable or support people with complex, fluctuating conditions to fully describe the impact that their MS and symptoms have on their life and many believe that this sets them at a disadvantage from the outset. The deadlines imposed on applicants to complete their forms are too inflexible For both PIP and ESA, applicants must initiate their application over the phone and they will be sent a form to complete. There is then a four week deadline for applicants to complete and return their form. Failure to meet this deadline results in claims being refused, unless the applicant can show that they had a good reason for the delay. This tight deadline is proving to be a barrier for many people we spoke to. Only having one month to complete the forms needs to change. What if you have a relapse? And it can take months to get support to complete the forms. (Greenock participant) We heard of long waiting lists for appointments at benefits advice services due to very high demand. We also heard how fatigue and cognitive symptoms makes filling out the forms particularly challenging. I work full-time and it s exhausting. I ve no energy left to fill out the forms and so I keep putting it off. (Inverness participant) There does not seem to be a clear reason for imposing the four week deadline and it is especially hard to justify in the context of both the demand for support and the substantial delays involved in processing the claims. As one participant noted: How can you only have a month to complete the form but they ve got six months or more to process your claim? (Greenock participant)

6 The DWP is not effectively communicating with applicants about the processes involved A common theme that emerged from all the focus groups was a lack of clear communication from the DWP about the process for applications and assessments, deadlines, consequences for not adhering to deadlines, and signposting to sources of support. Many participants with experience of PIP and ESA said that the forms needed to be clearer on the information required, explaining that it was like making a shot in the dark. Applicants are assessed against a set of descriptors for what they are able (or unable) to do, but virtually no one had any idea what these descriptors were and how they were graded. The problem is we don t understand how the form will be assessed. (Greenock participant) Participants also reported a lack of clarity from the DWP about the outcomes of assessments and what the implications were on their entitlements, length of award and conditions placed on it. In some cases applicants received no letter at all advising them on the outcome even though a decision had been made and money was being paid into their account. In other cases, only limited information about the decision was communicated. I didn t understand that there were different groups for ESA and I had no idea that I had been placed in the Work Related Activity Group or even that there were two different groups. I was there for two years and it was only when I got a letter saying my benefit was stopping that I discovered that I was probably in the wrong group. (Inverness participant) We heard from individuals who had had their benefit stopped because they did not know they had to apply for a reassessment at the end of a fixed term award. Worryingly given the number of first decisions overturned as wrong, many

7 participants were not told about their right to appeal decisions or that there were advice agencies where they could seek support. Professional support is needed for people with MS to adequately describe their symptoms and their impact when applying for PIP and ESA You need help and compassion. It s so stressful. (Aberdeen participant) There was a strong belief from participants that it is essential for people with MS to access support to complete applications for disability-related benefits. Many people reported that the stress caused by the benefits process had exacerbated their MS symptoms and several people confirmed that they had experienced a relapse as a direct result. A relapse can be serious and require hospital visits, treatment, and in some cases leave lasting deterioration and health problems. The need for support to complete the forms is particularly critical as the impact of MS and its symptoms is not easily described or captured in the question format of the forms, as noted by many of those who had experience of completing them. In addition certain symptoms of MS are very hard to explain, such as the impact of fatigue on daily living. Professional support is extremely valuable in describing the impact of fatigue and other hidden symptoms of MS, and in helping to effectively account for the impact of a fluctuating condition which cannot be easily described on an average day. Many people with MS said that describing the impact of MS is difficult, and that it s not easy to be open about how you are feeling. People commonly reported that having adjusted to life with MS you get used to it, you develop coping strategies, or you re constantly putting a silver lining on things. This practical and emotional adjustment presents a potential barrier, however, to receiving the support that people actually need.

8 I try to be positive about my illness and it s hard not to have this attitude when filling out the form. (Glenrothes participant) To an outsider you look fine. We all have MS here but we look fine. But it s masking a lot. (Glenrothes participant) The public answer is always I m fine but the private answer, sometimes you don t even want to admit that to yourself. (Inverness participant) Social workers and advice agencies can help individuals understand the information required in the application and help them describe this impact in a more realistic way. However, the support is not always readily available with stretched social work departments and advice agencies reporting huge increases in demand for help. It took three months to see a social worker. We had no support during this time. (Greenock participant) PIP and ESA assessors need a better understanding of the condition and its symptoms Participants believed that a major flaw in the both the PIP and ESA assessment process is that assessors have limited understanding of MS, if any at all. Participants who had been through the assessment process shared a number of concerning experiences, including one individual who had been physically pushed by an assessor to see if she was exaggerating her lack of balance. One participant recounted that: My daughter looks alright but some days she can t walk or brush her hair. How do you expect people like that to get up and go to work? The assessors don t see what a person with MS goes through, what it s like living with MS on a daily basis. (Greenock participant)

9 She added that the PIP and ESA assessments were degrading, explaining that the assessors expected an immediate response to their questions despite her daughter struggling to answer their questions due to having cognitive issues caused by her MS. Another participant shared her experience of the ESA assessment: I was medically retired after being diagnosed with Primary Progressive MS (PPMS). I had a face-to-face assessment for ESA and I was surprised because the assessor never asked me what was wrong with me. He just kept on filling out the online questionnaire. Eventually I offered him a booklet on PPMS which he promised to read at home. I had also given a medical statement from my doctor which was personally a very difficult read about my future outlook. I felt the assessor was really off-hand with me. (Glenrothes participant) One individual had a similar experience with the new PIP assessment. She was called for a face-to-face assessment with an assessor who was completely disinterested to the point of being rude. Having heard nothing on the outcome her enquiries found that the DWP had lost her paperwork and she had to go through a second assessment. This time it was with a mental health nurse who, like the first assessor, was very unprofessional. Having worked in the NHS I was staggered by the unprofessionalism. He didn t ask me anything about my MS so what was he basing his judgment on? (Glenrothes participant) Some people believed that applicants should be matched with a relevant assessor who is a specialist or has a special interest in the condition; for example, people with MS as their main condition would be referred to a nurse or GP with a neurology specialism. There was a belief that if assessors had or were to develop a grounding in MS then it would also help in circumstances where individuals have difficulty in articulating how they are feeling or what they are experiencing.

10 Medical and relevant professional opinions are frequently being ignored and applicants are often subjected to unnecessary face-to-face assessments The guidance for both ESA and PIP clearly states that face-to-face assessments should be a last resort and that assessors should use the information in the application form and medical evidence provided by the applicant where possible. However, everyone we spoke to who had applied for either ESA or PIP had been asked to come for a face-to-face assessment. The majority of people in the situation said that they believed that the evidence they provided was ignored. I just wish they d believe the forms. Why have they always got to see you? Even if you ve got letters from your doctors, they STILL want to see you. It s as if they think you re at it. (Greenock participant) I mean my doctor knows me, knows my MS. Why should some stranger get to decide how sick I am? (Greenock participant) Both the prospect and experience of face-to-face assessments can be the cause of enormous stress which can exacerbate the symptoms of MS. The stress of having to go in and get an assessment is unbelievable. (Inverness participant) The guy from the DWP was banging on the table and really aggressive. He made me cry. (Greenock participant) We were originally told we had to go to a PIP assessment centre in Glasgow. This would have involved two buses and a train! We had to fight for an assessment closer to where we live. When we got there the assessment was so degrading. The assessor kept firing questions at my daughter and was frustrated that she didn t answer straight away. My daughter has cognitive problems due to

11 the MS and needs time to process and remember information. He didn t care and it was awful. (Greenock participant) Most people who had experienced a face-to-face assessment believed that they had been or would be unfairly judged simply because they had made it to the assessment centre. One day I can use my limbs, I can stand. The next day I can t even open my hands. I wouldn t manage to go to an assessment on a bad day. I d have to go on a good day and then they d assume that that was how things were all the time. (Greenock participant) I feel like telling them, on my worst day I wouldn t even be able to be here answering your questions. I d be lying in bed. (Inverness participant) Assessments are failing to provide people with the right support outcomes The outcome of a flawed assessment process is flawed decision-making about people s support needs. In the case of ESA this means that too often people are assessed as fit to work or placed into the time-limited Work-related activity group (WRAG) for ESA. People placed in this group are meant to be offered support to find work and are compelled to undertake work-related activities such as looking for jobs or undertaking voluntary work. Their benefit is less than for those in the Support Group and it is stopped altogether after 12 months for those on contributory ESA. For PIP an unfair outcome could equate to not being awarded the right level of award to their need (i.e. being awarded only standard rate for their mobility or care needs when higher rate would be more suitable), or it could mean being told that they are not entitled to any PIP support at all. Many people believe that a lack of understanding about their condition had directly resulted in being placed in the wrong group.

12 Following his experience of PIP one participant said: It depends on who you get assessing. My PIP claim was rejected, then a couple of weeks later someone phoned to say sorry if it had landed on my desk first you would definitely have had a successful claim. (Greenock participant) One individual who was placed in the Work Related Activity Group for ESA said: Every six months I d get a call asking how I was feeling. They acknowledged that I was probably in the wrong group but I was actually told that it was easier to leave me in the WRAG because of all the paperwork that would need to be done if I moved to the Support Group. (Glenrothes participant) Another individual who had been medically retired from work yet placed into the WRAG -had a strikingly similar experience: Once assigned this group I was called up by my case manager every 6 months, asked how are you?, to which I would reply progressively worse, only to be told Ok, we ll leave it there. It s a bit of a farce. (Glenrothes participant) Both these individuals had been placed into the WRAG but not offered any support to find work. Their own case managers accepted that they had progressive conditions and were not suitable for work-related activities, however for administration reasons they were kept in the wrong group. This lack of understanding particularly about the progressive nature of conditions like MS is also reflected in the frequency by which people are invited for reassessments. We heard from people who had been awarded their benefit only to receive a letter calling them for a reassessment several months later. As well as the administrative burden this must place on the DWP, it also has an emotional toll on those being called for reassessment.

13 I ve got MS, that s not going to change, there s no cure. Why do I need to be constantly assessed? (Greenock participant) I live in constant fear of reassessment. I can t plan my life or arrange my finances based on what I currently get as I know that could change in an instant. (Aberdeen participant) Many people felt that there should be longer-term awards and greater certainty about the length of awards. Almost all participants believed that people with long-term chronic conditions that are not going to get better and who are out of work should automatically qualify for the Support Group of ESA; and that awards for ESA and PIP should be awarded on a long-term basis for those with progressive conditions. The new 20 metre rule for PIP is a source of major concern for people with MS At the end of 2012 the DWP announced that the distance people would need to walk in order to qualify for the highest rate of the mobility part of the benefit would change from 50 metres, to just 20 metres. Now, if people with a disability alone can walk more than 20 metres even using aids such as sticks they will no longer qualify for the highest rate of the benefit. The change could mean a loss of over 35 a week or access to a Motability vehicle, electric wheelchair or mobility scooter which many use to get to work, college or medical appointments. The DWP s own projections show that over half a million people are set to lose out under the new rules. This change is a major source of concern for people living with MS, many of whom are currently receiving higher rate DLA but may lose this entitlement under the far more restrictive criteria. Participants told us what the change would mean for them: I could make it to the bus stop but I couldn t make it back. (Aberdeen participant)

14 I could walk 20 metres but I may have to rest for three hours afterwards. (Inverness participant) When I got my motability car I went from working hours a week to working full-time because of my car. I m really worried I will lose it. (Inverness participant) Losing my [higher rate mobility] DLA would mean I couldn t get about because I couldn t afford my car. I would be housebound. (Aberdeen participant) My husband would have to stop work if I lost my independence. He d probably then have to start claiming benefits too. It makes no sense. (Aberdeen participant) I would be confined in my own space. (Aberdeen participant) I m really worried. I d be absolutely lost without my car. If I don t have it I ll be more disabled and need more care and end up costing the government more money. (Greenock participant) 20 metres is nothing. It s basically saying if you can somehow get yourself to your front gate then you are not disabled or entitled to help. It s absolutely ludicrous. The people making these decisions have no idea what it is like living with a disability, and how vital support is to people with mobility issues caused by conditions like MS. The DLA makes things a little easier but it s still a struggle. If I lost my DLA I d be stuck. I d lose my car and means of getting about, I d eventually be unable to afford my house. (Greenock participant) There would be huge personal costs to individuals and their families and, as highlighted by participants, the knock-on impact on individuals health, independence and on costs to the health and social care services cannot be underestimated. The way that someone s eligibility under the 20 metre rule is or will be assessed is also a cause for concern. One individual who had been through a PIP assessment

15 and who was awarded standard rate DLA explained that she was never even asked how far she could walk or how often and what the impact of doing so would be on her fatigue or daily living. She believes that her standard rate award was based on the fact that she made it into the assessment centre and therefore had walked more than 20 metres in doing so. People with MS feel demoralised and stigmatised as a result of the welfare reforms Everyone we spoke to was clear on this point that they did not want to be on benefits and that it was not a choice. Many people described the difficulty they had in accepting that they needed benefits and the emotional impact it can have: It s like giving up and accepting you re not going to get any better. There s a lot that goes through your mind when you have to apply for benefits. (Aberdeen participant) I want to keep going as long as possible and don t want to come on benefits. (Aberdeen participant) I would rather have my job back. I don t want to be on benefits. (Glenrothes participant) If you ve got a long-term condition you can t necessarily get another job and get back on your feet it s a downward spiral and a long grinding down process. (Greenock participant) Others talked about the stigma they felt because they were on benefits, and how the welfare reform changes and negative media portrayal of people on benefits has exacerbated this. Being on benefits is stigmatising. I feel I m on the scrapheap of life. (Glenrothes participant)

16 We want to work. We re not the same as people abusing the system but you re lumped together. No employer wants to take you on because of your unpredictability. (Glenrothes participant) One individual said that she was too embarrassed to tell her own family that she was receiving DLA because of the stigma being on benefits brings. People with MS feel the benefits system sets people up to fail One of the most commonly reported comments was about the toll that the application process has on people with MS. Applicants have to take an extremely proactive role in the application process and there was a feeling that only those who were wellinformed and had the energy to keep going were likely to succeed in receiving what they were entitled to. Many people commented on the lack of communication from the DWP: You ve got to get letters from everybody and chase all that up yourself. It s really hard work especially when you re already not well. (Greenock participant) I was lucky to have support but they do make it really difficult. They [the DWP] don t respond to letters. I ve written to them umpteen times. You re left wondering did they even get my letter? (Aberdeen participant) Others felt that the length and complexity of applications, short deadlines and poor communication from the DWP was aimed at reducing the number of applications by making people feel that it s not worth the hassle. The fact that so many decisions were being overturned on appeal was not reassuring about the fairness or effectiveness of the system: It s like no is the default position and if you have the tenacity to appeal then you are more likely to be successful. (Glenrothes participant)

17 Summary of recommendations Based on the findings from this project and our existing evidence base we make the following recommendations for change. 1. Application forms for PIP and ESA need to be simpler and clearer on what information is expected from applicants and how that information is assessed 2. Application forms for PIP and ESA should be reviewed for their suitability for people with complex and fluctuating conditions 3. The 4 week deadlines for applicants to complete forms should be extended to enable applicants to seek and receive help in completing them 4. Communications from the DWP should be clearer about the processes, deadlines, sanctions, rights to appeal and where applicants can find support 5. The UK and Scottish Governments should ensure that there is adequate provision and funding for advice and support services for benefits claimants 6. The DWP should appraise the feasibility of matching applicants to assessors with specialist knowledge of their condition(s) 7. The DWP and assessment providers should audit the way assessors seek to understand the condition and symptoms of the individuals being assessed, and review guidance and training materials as appropriate 8. The DWP and assessment providers should audit how professional evidence is currently being used in assessment processes and put steps in place to ensure professional evidence and opinion is given appropriate weight 9. Face-to-face assessments should only be used as a last resort; where necessary they should involve relevant specialists, be held in convenient locations for applicants and ensure that they respect the dignity of applicants

18 10. A presumption should be made against placing people who are not found fit for work and who have progressive conditions in the Work Related Activity Group of ESA 11. Both ESA and PIP should be awarded on a long-term basis for applicants with progressive conditions 12. The decision to introduce the 20 metre rule for PIP should be urgently reviewed Acknowledgements The MS Society is grateful to all the participants who took part in the focus groups, for their openness and contributions to producing this report and its recommendations. We also thank the expert speakers (from Aberdeen Welfare Rights, Inverclyde Council, Citizens Advice and Rights Fife and Raigmore Hospital Citizens Advice Bureau) who introduced the discussions and provided valuable information about the benefits system and where individuals can access local support. July 2014