Written evidence from Headway the brain injury association (PEA0330)

1.0              Executive summary

1.1              Headway is the UK-wide charity working to improve life after acquired brain injury (ABI).

1.2              Around 350,000 people are admitted to hospital annually with an ABI, as a result of trauma, stroke, tumour, or illness. The majority will require some form of support or rehabilitation.[1]

1.3              The effects of ABI can be devastating and last a lifetime. Effects can be hidden, often fluctuating, and generally misunderstood. The cognitive, emotional and behavioural, and psychological effects of ABI can be difficult to detect by those without specialist skills.

1.4              Headway carried out a survey of ABI survivors’ experiences with ESA and PIP assessments (23 October – 7 November 2017) to provide data for this inquiry. We received 558 responses: 353 from ABI survivors, 178 from close family members or friends, and 27 from others involved in the care and support of people affected by ABI.

1.5              ABI survivors experience difficulties with their assessment due to the effects of brain injury (cognitive, psychological, emotional and behavioural difficulties, contributing to issues around communication, social interaction, personal organisation and sensory overload). Stress and anxiety arising from the assessment process and uncertainty about financial support frequently exacerbate the effects of ABI.

1.6              Specialist assessors/decision-makers should process claims from people affected by ABI. Alternatively, as a minimum, all assessors/decision-makers should undergo specialist training in ABI. This would improve the experience of vulnerable people affected by ABI. It would also address concerns around knowledge of hidden disability and increase trust and confidence in the process for both ESA and PIP currently reported by people affected by ABI.

1.7              Applicants submitting specialist or third-party evidence have no means of knowing whether this has been considered. A system for recording and confirming consideration of evidence by assessors/decision-makers would increase confidence and trust in the process for ESA/PIP.

1.8              Offering audio or visual recording of face-to-face assessments would assist ABI survivors with memory problems. Recording would ensure all assessment information to be securely retained by assessors/decision-makers. It would also provide robust evidence, if mandatory reconsideration or appeal is required.

2.0              About Headway[2]

2.1              Headway works to improve life after ABI through providing services, support and information at every stage of the care pathway. Around 130 Headway groups and branches across the UK provide local services to ABI survivors. UK services include a Helpline, comprehensive website, Emergency Fund and award-winning publications.

3.0              About acquired brain injury (ABI)

3.1              ABI is an injury to the brain which has occurred since birth. Causes include: tumour, stroke, haemorrhage, encephalitis, carbon monoxide poisoning, hypoxic injury, and trauma. Traumatic brain injury (TBI) is a sudden trauma to the brain. Principal causes are falls, road traffic collisions, workplace injuries, violent assault and sporting injuries.

3.2              Even after a minor head injury, brain function can be impaired temporarily (concussion). Effects include headaches, dizziness, fatigue, depression, irritability and memory problems, lasting for weeks, months or even years.

3.3              Survivors of more severe brain injury are likely to have long-term problems affecting their personality, relationships and ability to live independently. Even with rehabilitation and support, survivors and their families are likely to face uncertain and challenging futures.

3.4              This issue can be compounded as the effects of the person's ABI are often hidden. The cognitive, psychological, emotional and behavioural effects of brain injury can be difficult to detect by those who have not had specialist training.

4.0              Are some groups of claimants particularly likely to encounter problems with their assessments – and if so, how can this be addressed?

4.1              ABI survivors often face discrimination or additional difficulties because of the hidden nature of their disabilities and the lack of knowledge and understanding around ABI.

4.2              ABI survivors across the UK have reported that their interaction with the benefits system and, more specifically, PIP and ESA assessment processes is extremely stressful. In addition to uncertainty about their financial situation, they are frightened that their condition will not be understood, that the effects of ABI will not be taken into account, that medical evidence will be disregarded, and that they will not be believed. This stress often exacerbates the difficulties caused by their ABI. Families and carers are also affected by increased stress and anxiety. There is very little trust or confidence in the process or those carrying out the process.

4.3              In response to this inquiry, we conducted a survey about the experiences of ABI survivors with ESA/PIP assessment. The results demonstrate the difficulties many respondents have encountered in the ESA/PIP processes.

Methodology

4.4              The survey contained a mix of quantitative and qualitative questions. It was available from 23 October 2017, and was publicised on our website, social media channels, and distributed across our network of groups and branches.[3]

4.5              We received 558 responses, representing every region of the UK. 405 respondents had applied for ESA and 328 had applied for PIP within the last two years.

Results – Employment Support Allowance

4.6              We asked about experiences of completing Form ESA50. Of 355 people who responded to this question, 274 (77.18%) said it was difficult to explain the effects of their ABI on the form.

4.7              Comments:

• It was done verbally over the phone. It was very difficult to get the advisor to understand my situation.
• I found it difficult to emphasise the problems my husband has because, like everything else in the benefits system, the emphasis is on physical disability.
• My disability does not fit a tick box form.
• It was difficult to know where to write about my brain injury.

4.8              We asked about experience of the Work Capability Assessment (WCA).  204 people replied:

4.9              We asked for any further comments about the ESA process. 70 people replied. Comments varied. Some mentioned individual kindness and understanding. However, the vast majority were critical of the process. Comments:

• It is HUGELY stressful. More stressful that I admit to my friends although I am sure they still know it is a significant cause of anxiety. It often keeps me awake at night... I have zero faith that I could convey the effects of a brain injury to the benefits assessors. Very, very few people understand the invisible effects, and yet they have a far greater effect on me day to day than my mobility limitations.
• I was very nervous and unsettled. The assessor made me feel very anxious as I didn’t know what to expect and I know that I don’t look like I need help or have any problems.
• The assessment was an extremely stressful experience for my partner, particularly when he received the letter stating he had been assigned as 'fit for work'. Although he was subsequently assigned to the work-related activity group and is currently in receipt of ESA, we know he will be reviewed again over the next 18 months and may have to endure another face-to-face assessment.

Results – Personal Independence Payment

4.10              We asked about experiences of completing the initial application form for PIP. Of 315 people who responded to this question, 242 (76.85%) said it was difficult to explain the effects of their ABI on the form.

4.11              Comments:

• The form failed to allow me to explain fully that brain damage stops you functioning as you once did. And that it affects everything that you try to do. And that it varies hugely day-to-day depending on fatigue/energy levels, and what else you have to deal with at the same time. If the central computer in your car breaks down the car is scrap. ...Well my brain, my central computer, has been permanently damaged. I just WISH that I could replace it. But I can’t. The form didn’t seem to want to know this, just if I can lift my arm above my head. Brain damage is still not taken seriously enough in this form.
• The form didn’t seem to take account of the kind of unusual things which were happening to me...I don’t have mobility issues, I can even manage my dizziness and falling over really well now. I look perfectly fine. I can say words that make it seem like everything is perfectly normal – but in reality my life is one big nightmare...I could probably work in any job for 45 minutes or an hour and no one would know anything was the matter until I burst out into a big labile attack[4] or fell asleep on the spot. How do you explain that on a PIP form? It doesn’t seem to know that these symptoms even exist. It’s made for people with bad legs and backs, not for people with brain injury.

4.12              We asked about experiences of the face-to-face assessment for PIP within the last two years.  251 people replied:

4.14              A common theme was the challenge people experienced in communicating how their ABI affects their life, particularly when their face-to-face assessment is being carried out by an assessor with no specialist knowledge of brain injury. Comments included:

• It’s really difficult to try and explain all the issues associated with having a brain injury.

• I was very lucky that the person assessing me had firsthand knowledge of a close family member having had a stroke as a young adult.
• They saw an articulate man, but did not see the man who turns up at the wrong place at the wrong time for interviews. The man that leaves the grill on resulting in a fire or the man who locks himself out all the time or leaves his keys in the door and gets burgled. They don’t see the man who loses his temper at the drop of a hat or can’t remember to take his medication without being reminded. The man who can’t cook a meal without burning or forgetting that food is cooking, many burnt saucepans.
• A horrible experience with someone who clearly has no idea about brain injury and its effects.
• My biggest difficulty is neurofatigue and it’s so difficult to explain the impact of this to someone who doesn’t understand it or has not seen the effects on me. I was unwell for the week after the interview due to the effects of the fatigue, which they obviously don’t see, I have been extremely stressed and anxious as I wait for the result.
• People who don’t know anyone or had experience with brain injury really don’t understand their day to day struggle, they may look fine and appear fine in a 30 minute assessment but they don’t see their everyday struggle.

Input from professionals and others:

4.15              We asked respondents about the extent to which evidence was taken into account from carers, relatives, case managers, support workers and medical professionals.

4.16              Many respondents commented that they do not believe their evidence was taken into account:

ESA:

• I took evidence from Headway and my neurologist but they seemed to totally ignore all my evidence.
• All written evidence was completely ignored.
• My case manager came with me to the assessment and I feel they didn’t take any notice of her.
• I don’t know if they were taken into account at all even though evidence was put forward from my GP and neuro specialist.

PIP:

• We took evidence with us from case manager, OT etc. Don’t feel these were looked at.
• I showed her the evidence. Nothing was noted.
• We gave them letters from his GP, discharge papers from rehab and all his hospital paperwork and they never even looked at any of it, until I complained to my local MP because they scored him ZERO points.

Audio or visual recording of face-to-face assessments:

4.17              We asked whether respondents felt the assessor should offer to make an audio or visual recording, of their face-to-face assessment, for ESA and PIP.

4.18              We asked respondents, who felt they should be offered a recording, why this would help. Their comments mostly fall into two categories.

4.19              First, many people affected by ABI experience difficulties in relation to memory. A recording of the assessment interview would provide them with a reliable means of reviewing and recalling what was said.

4.20         Comments:

• It’s hard to remember what was said, and hard to understand what they meant.
• I don’t remember the assessment in any detail. The man who assessed me had a young wife who had had a stroke a few months before he did my assessment. He was extremely well able to understand the problems that I have as a result of my brain injury. I am terrified that someone else will reassess and alter the decision because they have less understanding of brain injury.

4.21              Second, and perhaps this is not exclusive to ABI survivors, there is a clear lack of trust in the process. The majority of respondents told us that they felt the assessor’s report was inconsistent with the answers they had given during the assessment. They felt that being provided with a recording of the assessment would be a useful safeguard to improve accuracy of reporting and would also be evidence should their claim be refused.

4.22              Respondents commented:

• The decision-maker's letter was not in any way representative of the assessment. Activities I struggled with were left out, some information was mis-recorded in a way that indicated that because I could mostly focus for half an hour, I was fully functional. I'm very much not, I'm potentially a risk to myself or others during episodes of exhaustion or cognitive fatigue. My apparent lucidity during the half hour assessment was because the situation was stressful, having to 'prove myself' in a system where you're 'guilty until proven innocent.' At times I was tearful, and I experienced multiple muscle spasms/tremors – these points are not reflected in the decision-maker's letter. (PIP)
• The decision that they have made were not representative. If a recording had been made it may have been different. (PIP).
• I was determined to have a recording as I've heard of people whose assessors lied on reports about what was said at the assessment.  Despite my having a recording in which I had to have my name registered as accompanying my daughter, the assessment report stated that my daughter was alone in the room with the assessor and that I waited in the waiting room during the assessment.  The report was full of untruths and misrepresentations of what was said (either omitting important information or inventing things that weren't said) but at least I have proof.  I think it is ESSENTIAL that ALL assessments are recorded for the protection of all participants. (ESA)
• I think if there is proof of what was said/done in the assessments, there'd be less people having to go through MRs and tribunals to get the money they are entitled to. (ESA)

4.23              Many financial institutions and other organisations now routinely record telephone calls to protect themselves and their customers. It seems reasonable that when conversations are taking place which could have an impact on vulnerable people’s financial security, recording of these conversations should be offered to provide applicants with a reliable record. In addition, recordings would protect assessors against accusations of misreporting, inaccuracy or dishonesty. This could also reduce the number of claims which are taken to MR or on to costly appeal. We understand that claimants are currently allowed to record their assessment, but specialist equipment is required which puts barriers in the way of doing so.

Additional comments

4.24              We wish to draw the attention of the Committee to the Health Committee’s 2001 Report, Head Injury: Rehabilitation.[5] The report makes specific reference to the needs of ABI survivors when coming into contact with the welfare benefits system, specifically:

• We recommend that those assessing brain-injured people for disability living allowance have specialist skills which enable them to understand the complex combination of physical, cognitive and behavioural impairments characteristic of this type of neurological disability; and that the assessment is adjusted to allow the input of a patient’s advocate, be it a carer, relative or case manager.[6]

4.25              Our survey asked about experience of MR and appeal. Due to space constraints we have not commented on this area. However we believe that implementation of our recommendations (see 5.1-5.4 below) would help reduce the current unacceptably high level of cases which go forward to MR and costly appeal.

5.0              Conclusions

Our evidence shows that:

5.1              ABI survivors encounter problems with their assessment due to:

• The often-hidden and fluctuating nature of the effects of ABI.
• The cognitive, psychological, emotional and behavioural effects of ABI, contributing to issues around communication, social interaction, personal organisation and sensory overload.
• The impact of stress and anxiety from the assessment process and uncertainty about financial support can exacerbate the effects of ABI.

5.2              Applicants feel there is a lack of knowledge about ABI among assessors/decision-makers. Specialist assessors[7] and decision-makers to process claims from people affected by ABI or, as a minimum, all assessors/decision-makers undergoing specialist training in ABI, would improve the experience of vulnerable people affected by ABI. This would address concerns around understanding of hidden disability and also reduce the lack of trust and confidence in the process for both ESA/PIP. It was also a recommendation from the Health Committee in 2001.

5.3              Applicants affected by ABI have no means of knowing whether specialist and third party evidence has been taken into account as part of their claim. A system for recording and confirming consideration of third party evidence would address this issue and reduce the lack of confidence and trust in the process for both ESA/PIP.

5.4              There is a strong level of support for making audio or visual recording of face-to-face assessments more accessible. For ABI survivors, memory is frequently unreliable. Recording the face-to-face assessment would support applicants with memory difficulties. Recording would ensure all information given during the assessment was securely retained by assessors/decision-makers. It would provide robust evidence if required during MR or appeal.

November 2017