Chapter 2: Mental health and benefits

CPAG

2. Mental health problems, stigma and misconceptions

Challenging stigma and misconceptions

Discrimination

3. Mental health and the benefit system

4. Getting support

Key facts

•Every mental health experience is unique. Even people with the same diagnosis may be affected in very different ways.

•When applying for benefits, focus on how a mental health problem affects you. This gives a clear insight into how your day-to-day life is affected.

•You do not need a formal diagnosis of a mental health problem to apply for benefits related to your mental health.

•You may experience stigma from people in the benefits system who have a poor understanding of how mental health works.

•The process of applying and managing a benefit claim can impact your mental health, even if you do not have a mental health problem. There is support available to you if you need it throughout the benefits process.

1. How mental health problems can affect you

Poor mental health can affect your day-to-day life. This is true even for those who do not have a mental health problem. Feeling stressed, low or anxious, even for a short period, can make it difficult to keep things organised, get enough sleep or concentrate.

Every mental health experience is unique. Even people with the same diagnosis may be affected in very different ways. A certain symptom of a mental health problem may cause more difficulty to one person than another, depending on factors like:

•how severe the symptom is;

•how frequently it occurs;

•your physical health;

•the kind of job or other day-to-day activities you do;

•your living situation;

•the amount of support you have from friends, family or services;

•treatments you may be taking or having;

•what other symptoms or health problems you are experiencing.

When applying for benefits, it is therefore important to communicate how your symptoms affect you and your day-to-day life.

Mental health symptoms

Mental health diagnostic labels are not always the best way to understand mental health problems, as each person can experience the same diagnosis differently. When applying for benefits, focus on how a mental health problem affects you. This gives a clear insight into how your day-to-day life is impacted, rather than relying on a diagnostic label that might not always be understood.

How much mental health symptoms affect you may also impact how much support you need during a benefit claim and what kind of support would be most helpful. If you are supporting someone with a mental health problem to claim benefits, you should not assume that they need help with everything or that a certain symptom impacts them in a certain way. Ask about their capabilities and needs. There is more information about giving advice in Chapter 3.

See below for an outline of some common mental health symptoms and how they might affect you in the benefits process. These symptoms can apply to a wide range of diagnoses and experiences. This list is not exhaustive and there may be many other experiences that are not covered here that are just as relevant to talk about in your benefits application. It is also okay if the symptoms listed here affect you differently than those outlined.

For some symptoms, certain diagnoses might be particularly relevant. However, not every person with a particular diagnosis will experience these symptoms. Remember also that not everyone with a mental health problem has a diagnosis (see here), and those with a diagnosis might disagree with it.

Compulsions

Compulsions are repetitive behaviours that you feel you have to do to deal with the distress caused by an obsessive or anxious thought.1 These can be physical actions or mental rituals – eg, touching things in a particular order or repeating a word or number. These compulsions can be time consuming and exhausting. They can make it difficult to complete forms, go to new places or interact with people.

When to ask about compulsions

Anyone can experience compulsions, but it might be particularly relevant if somebody is diagnosed with:

– anorexia;

– body dysmorphic disorder (BDD);

– hoarding disorder;

– obsessive compulsive disorder (OCD), including perinatal OCD;

– obsessive compulsive personality disorder (OCPD).

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Concentration problems

Many mental health problems and treatments can impact concentration levels. It may be hard to focus on something for a long period of time or you may find you get distracted easily. You might lack motivation to do things like filling in forms if you know it will need a lot of concentration, or it could take you a long time to complete them. You might also find it difficult to follow what is being said at appointments or assessments and you might forget details like claimant commitments or appointment dates.

Delusions

A delusion is a belief that other people do not share and which other experiences or perceptions show cannot be true.1 However, these delusions can feel completely real to you when you experience them. Delusions might involve beliefs about you or other people. You may believe you are a very important person, or that other people are trying to harm you. Delusions can impact your benefits claim in different ways and this will depend on what the specific delusion is.

When to ask about delusions

Anyone can experience delusions, but it might be particularly relevant if somebody is diagnosed with:

– addiction or substance misuse;

– bipolar disorder;

– borderline personality disorder (BPD);

– hoarding disorder;

– psychosis, including postpartum psychosis;

– schizoaffective disorder;

– schizophrenia;

– schizotypal personality disorder.

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Disorganised thinking and speech

Some mental health problems and treatments can make your thoughts and emotions feel confused and disorganised. Disorganised thinking and speech can lead you to:1

•speak very quickly;

•stumble over words;

•link words together because of the way they sound rather than what they mean, including rhyming;

•repeat words;

•copy what another person says;

•not finish sentences, both written or verbal;

•change topic very quickly and often;

•find your attention split between lots of different things.

These symptoms can make it difficult to communicate clearly both verbally and in writing.

When to ask about disorganised thinking and speech

Anyone can experience disorganised thinking and speech, but it might be particularly relevant if somebody is diagnosed with:

– bipolar disorder;

– psychosis, including postpartum psychosis;

– schizoaffective disorder;

– schizophrenia;

– schizotypal personality disorder.

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Dissociation

There are many ways that people experience dissociation.1 In general, it is a feeling of disconnection from yourself and the world around you. This normally happens in response to stress or trauma and can last for a short or a long time. Dissociation can create gaps in your memory, both short and long term, or make you feel like you are a different person. Some people who dissociate can have difficulty keeping track of what happens in their lives or who they are as a person. This can make it difficult to complete benefit applications, remember appointments or keep track of the progress you have made in a benefit claim.

When to ask about dissociation

Anyone can experience dissociation, but it might be particularly relevant if somebody is diagnosed with:

– anxiety, including perinatal anxiety;

– bipolar disorder;

– borderline personality disorder (BPD);

– a dissociative disorder;

– phobias;

– post traumatic stress disorder (PTSD), including complex PTSD and postnatal PTSD.

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Distrust

Distrust can be a symptom of many different mental health problems. It may be distrust due to a delusion1 or caused by a traumatic event. This distrust might make it difficult for you to seek help when applying for benefits or make it difficult to apply for benefits at all. If something happens with your claim (eg, if you are given a sanction), this may make your feelings of distrust worse.

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Eating problems

Eating problems are any relationships with food that you find difficult. They can happen to anyone at any weight. They may involve:1

•eating too much;

•eating too little;

•only eating certain types of food, including avoiding certain colours or textures of food;

•making yourself purge what you have eaten;

•eating things that are not really food, such as dirt or soap.

Eating problems can affect your nutrition, which can lead to problems with concentration and overall physical health. You may lack the energy to complete forms or attend appointments, or you may find that stress you experience when applying for benefits triggers eating problem behaviours.

When to ask about eating problems

Anyone can experience eating problems, but it might be particularly relevant if somebody is diagnosed with:

– an eating disorder;

– depression;

– pre-menstrual dysphoric disorder (PMDD);

– specific phobias relating to food or eating.

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Flashbacks

A flashback is a vivid experience in which you relive some aspects of a traumatic event or feel as if it is happening right now.1 Depending on what your flashbacks are triggered by, you might find it very traumatic to recall past events or go to certain places. You may find areas like job centre offices upsetting, or find that questions you are asked in benefit forms or in assessments cause flashbacks.

When to ask about flashbacks

Anyone can experience flashbacks, but it might be particularly relevant if somebody is diagnosed with:

– a dissociative disorder;

– post traumatic stress disorder (PTSD), including complex PTSD and postnatal PTSD.

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Hallucinations

Hallucinations involve seeing, hearing, feeling or smelling something that other people do not.1 These can be positive things, but they might also be negative things such as hearing voices that are saying horrible things about you. Sometimes people are aware that they are hallucinating and other times they are not. This can make it difficult to know which experiences are real, which can be hard to communicate in benefits forms and assessments. These hallucinations can also be distracting, which can make it hard to complete forms or concentrate in assessments.

When to ask about hallucinations

Anyone can experience hallucinations, but it might be particularly relevant if somebody is diagnosed with:

– addiction or substance misuse;

– bipolar disorder;

– depersonalisation or derealisation disorder;

– psychosis, including postpartum psychosis;

– schizoaffective disorder;

– schizophrenia.

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Hoarding

Hoarding is when you have so many things that you cannot manage the clutter where you live and you find it difficult or impossible to throw things away. Hoarding can be experienced as part of another mental health problem or on its own as hoarding disorder.1 Those of us who hoard might lose important documents very easily or have trouble judging what is important.

When to ask about hoarding

Anyone can experience hoarding, but it might be particularly relevant if somebody is diagnosed with:

– depression;

– hoarding disorder;

– obsessive compulsive disorder (OCD), including perinatal OCD;

– obsessive compulsive personality disorder (OCPD).

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Impulsive actions

Some mental health problems may cause people to act very impulsively. This could include making a big life decision without thinking it through, such as spending a lot of money or quitting a job, or saying things to other people without thinking it through. It can also include self-harm1 or other behaviours directed at themselves. This can cause a lot of disruption and distress that can affect a benefit claim, including leading to sanctions. People working in the benefit system might see these actions as intentional, rather than as a symptom of a mental health problem.

When to ask about impulsive actions

Anyone can experience impulsive actions, but it might be particularly relevant if somebody is diagnosed with:

– addiction or substance misuse;

– antisocial personality disorder;

– binge eating disorder;

– bipolar disorder;

– borderline personality disorder (BPD);

– histrionic personality disorder;

– hoarding disorder;

– impulse control disorders;

– mood and conduct regulation disorders (only applicable to those under 18);2American Psychiatric Publishing, Diagnostic and Statistical Manual of Mental Disorders, 5th edition, 2013

– psychosis, including postpartum psychosis;

– schizoaffective disorder;

– schizophrenia;

– body focused repetitive action disorders such as trichotillomania and skin picking disorder.

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2 American Psychiatric Publishing, Diagnostic and Statistical Manual of Mental Disorders, 5th edition, 2013 »

Insecurity, low confidence and low self-esteem

Many mental health problems, as well as stigma around mental health problems, can cause insecurity, low confidence and low self-esteem. These feelings may prevent us from applying for benefits in the first place if we convince ourselves we do not deserve them, even if we are entitled to them. These feelings might make it very hard for someone to advocate for themselves in benefits applications and assessments. They may feel uncomfortable with challenging benefits decisions without support and reassurance.

Intrusive and obsessive thoughts

Intrusive or obsessive thoughts are unwelcome images, urges, worries or doubts that repeatedly appear in your mind. They can make you feel very anxious and they can be very hard to manage. You may have these thoughts about a particular situation, such as feeling something bad will happen to you if you go outside, or have them about yourself.1 These thoughts might make it very difficult to complete forms, concentrate and interact with other people. They may also affect your self-esteem.

When to ask about intrusive and obsessive thoughts

Anyone can experience intrusive and obsessive thoughts, but it might be particularly relevant if somebody is diagnosed with:

– anxiety, including perinatal anxiety;

– avoidant personality disorder;

– body dysmorphic disorder (BDD);

– hoarding disorder;

– obsessive compulsive disorder (OCD), including perinatal OCD;

– obsessive compulsive personality disorder (OCPD);

– phobias;

– post traumatic stress disorder (PTSD), including complex PTSD and postnatal PTSD.

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Low or lack of insight

Some people with mental health problems might lack insight into how they are acting or feeling. Lacking insight is when we do not recognise or understand something about our mental health. This could include believing things that may not be based in how you usually see the world, or not wanting to seek the support needed to keep safe. This may prevent someone from applying for benefits entirely or mean that they do not explain the full extent of how their mental health problem affects them in an application.

When to ask about low or lack of insight

Anyone can experience low or lack of insight, but it is more common with some mental health problems such as:

– hoarding disorder;

– during experiences of psychosis;

– during experiences of mania;

– during experiences of dissociation.

It might be difficult to ask someone about low or lack of insight, as the person you are speaking to might not agree with you about what is happening or what they are experiencing. It is important not to push them or to make assumptions about what they are experiencing. If they do not want your help, you can remind them you are there for them when they need it and return to the topic another time. You should only intervene if you believe their low insight or lack of insight is putting them or someone else at serious risk of harm (see here).

Mania or hypomania

Mania and hypomania are periods of over-active and excited behaviour that can have a significant impact on your day-to-day life. Hypomania is milder and lasts for a short period (a few days) and mania is more severe and can last longer. Mania and hypomania may cause a sense of euphoria, excitement and high energy. They can lead to problems concentrating, impulsive behaviour and delusions.1 During a period of mania or hypomania, someone may miss appointments and deadlines, and they may not carry out administrative tasks.

When to ask about mania or hypomania

Anyone can experience mania or hypomania, but it might be particularly relevant if somebody is diagnosed with:

– bipolar disorder;

– psychosis, including postpartum psychosis;

– schizoaffective disorder.

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Memory problems

Many mental health problems and treatments for mental health problems can cause problems with memory. You might have problems remembering what someone has told you, or have trouble remembering details from different parts of your life. This can make it hard to remember important dates or details about yourself that might be needed during a benefit claim.

Mood changes

Many mental health problems can lead to shifts in mood. These might be long term changes, such as feeling low for a long period of time, or might be very rapid mood swings. They may happen regularly at certain times of the year or happen unexpectedly. Low moods can have a big impact on motivation and self-esteem, which can make it difficult to do a lot of the tasks involved with benefits applications and management. Other moods might make it difficult to interact with people, such as if you get angry or frustrated very easily because of your mental health problem. Very happy or excited moods, such as ones you might experience as part of mania or hypomania, might lead you to miscommunicate how your mental health problem affects you.

Panic attacks

Panic attacks are a type of fear response.1 They are an exaggeration of your body’s normal response to danger, stress or excitement. They have physical symptoms that can feel like a heart attack, such as a racing heart, feeling faint and sweating. They can happen at different times for everyone and may be triggered by certain situations. Some people may have panic attacks during assessments or appointments for benefits, or have a panic attack just thinking about having to do those things.

When to ask about panic attacks

Anyone can experience panic attacks, but it might be particularly relevant if somebody is diagnosed with:

– anxiety, including perinatal anxiety;

– avoidant personality disorder;

– borderline personality disorder (BPD);

– obsessive compulsive disorder (OCD), including perinatal OCD;

– obsessive compulsive personality disorder (OCPD);

– phobias;

– post traumatic stress disorder (PTSD), including complex PTSD and postnatal PTSD;

– pre-menstrual dysphoric disorder (PMDD).

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Paranoia

Paranoia is when you think or feel you are being threatened in some way, even if there is no evidence of this that other people can see. It is similar to some forms of delusions. You may think that you are being watched, that people are intentionally trying to upset you, or that people are trying to steal from you.1 These feelings can make it very difficult to trust and engage with services that support people with benefits applications and with the benefit system itself. Paranoia can be based in a real past event. For example, if someone was turned down for benefits or sanctioned in the past, they may believe that the system is against them personally.

When to ask about paranoia

Anyone can experience paranoia, but it might be particularly relevant if somebody is diagnosed with:

– bipolar disorder;

– borderline personality disorder (BPD);

– paranoid personality disorder;

– psychosis, including postpartum psychosis;

– schizoaffective disorder;

– schizophrenia;

– schizotypal personality disorder.

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Physical health problems

Many mental health problems and treatments for mental health problems can have physical health effects. This can range from aches and pains in the body to experiences such as fainting and disruptions to the menstrual cycle. These physical health effects can make it very difficult to complete day-to-day tasks or interact with other people for long periods of time, depending on their nature and severity.

Self-harm

Self-harm is when you hurt yourself as a way of dealing with very difficult or intense feelings, painful memories or overwhelming situations and experiences.1 Self-harm is not always easily identifiable and can include behaviours like over-exercising. Someone who is self-harming may be particularly vulnerable in stressful situations such as benefits assessments or reviews. Some people are asked about their self-harm in very insensitive ways during benefits assessments, which can be very unsafe. See here if you are asked about self-harm in an assessment.

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Self-neglect

Self-neglect is when you are living in a way that puts your wellbeing or health at risk. This can include problems with:1

•eating enough;

•looking after your personal hygiene;

•seeking help for medical problems;

•keeping where you live clean;

•managing essential tasks such as paying bills.

Self-neglect can happen for a range of reasons, including:

•not being able to look after yourself because of your mental health problem;

•not realising you are neglecting yourself because of your mental health problem;

•not having enough money to look after yourself;

•not having the care and support you need to look after yourself.

If someone is neglecting themselves, they might find it difficult to attend appointments or keep track of paperwork. Be kind and understanding when you are interacting with someone who may be neglecting themselves, as they may face a lot of judgement from others. Self-neglect can also be a safeguarding concern (see here).

When to ask about self-neglect

Anyone can experience self-neglect, but it might be particularly relevant if somebody is diagnosed with:

– addiction or substance misuse;

– bipolar disorder;

– depression;

– hoarding disorder;

– psychosis, including postpartum psychosis;

– seasonal affective disorder (SAD);

– schizoaffective disorder;

– schizophrenia;

– schizotypal personality disorder.

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Sleep problems

Many mental health problems and treatments for mental health problems can impact sleep.1 Some of us may sleep too much and others may sleep too little. We may also have very disrupted sleep, such as waking up multiple times in the night, have nightmares, or have difficulty getting out of bed in the morning. Sleep problems can impact concentration and memory and make it very difficult to navigate the complex benefit system. Some people may have sleep problems caused by the benefit system itself.

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Suicidal thoughts and feelings

Suicidal feelings can range from having abstract thoughts about ending your life or feeling people would be better off without you, to having clear plans to end your life.1 These feelings can be scary and hard to manage. These feelings can last for a long or short period of time and have a significant impact on your day-to-day life. People experiencing suicidal thoughts and feelings might also have less motivation, making it hard to attend appointments or complete forms. When issues such as a delay in benefits, miscalculation or a change in circumstances comes up, these might feel very difficult to deal with and can contribute to the suicidal feelings. People experiencing these feelings can be very vulnerable, and people working in the benefit system are not always sympathetic to this and may not understand that the way they are communicating can be causing someone harm. See here if you are asked about suicidal thoughts and feelings in a benefit assessment.

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Mental health treatments

The treatments used for mental health problems can have side effects that make it difficult to engage with the benefits process. Some of these are outlined below. This list is not exhaustive and there may be many other experiences that are not covered here that are just as relevant to talk about in your benefits application.

It is also important to be aware that not everyone with a mental health problem is getting treatment for it. They may be able to manage the symptoms on their own, or there may be a waiting list for treatment. Waiting lists for mental health support can be very long and support supplied by the NHS might not last for a long time, so some people may have finished their treatment but are still struggling.

Medications

There are a range of medications someone may be taking to help with their mental health problem.1 These can include:

•antidepressants;

•antipsychotics;

•sleeping pills;

•mood stabilisers.

All of these medications have side effects, which can be either mild or severe. Some people may stop taking medications because of the side effects. Common side effects of these kinds of medication can include:

•nausea;

•suicidal feelings;

•hypomania or mania;

•decreased alertness;

•heart, liver and eye problems;

•sexual and hormonal problems;

•drowsiness;

•confusion;

•memory problems.

Side effects of medications can make it difficult to complete forms, remember important dates, or interact with other people.

Tardive dyskinesia

Tardive dyskinesia (TD) is a condition where your face, body or both make sudden, irregular movements which you cannot control.2 Some people might call these tics. Some forms of TD are mild and others are very severe and can cause significant disruption to your day-to-day life, including not being able to hold objects securely or walk without support. TD is a side effect of certain antipsychotic medications that may be prescribed for psychosis, schizophrenia, bipolar disorder or severe depression.

TD does not happen right away and not everyone gets it. It can take months or even years for symptoms to show, and they can happen even after you have stopped taking the medication.

TD may affect the kind of support someone might need with the physical process of applying for benefits.

Harry’s experience

‘I think not wanting to take medication can often be viewed with suspicion. Like if you aren’t willing to take something with serious side effects and consequences you are considered untreated and therefore contributing to the condition you need benefits for, whereas you may have found other ways of managing the issues.’

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Talking therapy

Talking therapies are treatments which involve talking to a trained professional about your thoughts, feelings and behaviour.1 There are many types of talking therapy. It is also called ‘counselling’ or ‘psychotherapy’. As therapy involves exploring complicated feelings and experiences, the process can make people feel very vulnerable. Someone having therapy might feel more anxious or worried just before or after a therapy session, or they may feel difficult feelings throughout the whole period of therapy. These feelings can impact their motivation, concentration and ability to interact with other people.

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Hospital procedures

In very rare cases, some mental health problems will be treated using certain hospital procedures. These are:

•vagus nerve stimulation (VNS): an operation to install an electrical device in your chest which sends an electrical pulse to the vagus nerve;1

•deep brain stimulation (DBS): a type of brain surgery to install a stimulator that sends electric pulses through your brain;2

•electroconvulsive therapy (ECT): a treatment that involves sending an electric current through your brain;3

•neurosurgery for mental disorder (NMD): a type of brain surgery where small areas of your brain are destroyed.4

For VNS and DBS, the side effects are minimal. They can include headaches and sleep problems. For ECT and NMD, side effects can include memory loss, confusion, difficulty learning new information and difficulty concentrating. Someone experiencing these side effects may need additional support in the benefits process. You may also need reasonable adjustments to help you manage a benefit claim.

Sectioning

Being sectioned means you are kept in hospital for treatment or assessment because there is a risk to the health and safety of yourself or others. In England and Wales, this has to be done within the rules set out by the Mental Health Act 1983.5 In Scotland, this has to be done within the rules set out by the Mental Health (Care and Treatment) (Scotland) Act 2003.6

There are different types of sections with different rules, and there are assessments that need to happen before you can be sectioned.

Laws around sectioning are different in England, Wales and Scotland. For information on sectioning in England and Wales, see the Mind information on sectioning.7 For information on sectioning in Scotland, see the Mental Welfare Commission for Scotland information on the Mental Health Act (Care and Treatment) (Scotland) Act 2003.8

While you are in hospital, any benefits you are getting may stop or be reduced. Being sectioned might also make it difficult to communicate with organisations managing your benefits, such as the DWP. After spending time in hospital, you might need to claim benefits for the first time. See Chapter 16 for more information on benefits when you are in hospital.

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2. Mental health problems, stigma and misconceptions

Challenging stigma and misconceptions

Discrimination

Mental health problems can carry a lot of stigma in society.1 This is partly because people can have misconceptions about mental health problems, leading to negative or inaccurate beliefs. Misconceptions and stigma may be about a specific mental health problem, or they may be about mental health in general. Staff in job centres, assessment centres or the DWP may not be consistently trained about mental health, and may have stigmatising views and misconceptions. You might also experience stigma and misconceptions from people supporting you with your benefits claim, including friends, family and advisers. You may also have some misconceptions about your mental health and the benefit system. This can have an impact on your benefit claim.

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Types of stigma

You may come across stigma and mistaken beliefs about mental health problems in the benefits process. These can include, but are not limited to, the following.

•Trivialising: is when something is made to seem less important or meaningful than it actually is. This can include people thinking mental health problems are not ‘real’, or not taking them seriously.

•Perceptions of violence or danger: some people think people with mental health problems are violent or dangerous. This can affect the way they treat you, including how they interpret your body language and the words you use.

•Stereotypes: there are many stereotypes about what certain mental health problems should ‘look’ like. For example, some people might think that eating problems only affect women or that people with anxiety cannot make eye contact when speaking. These stereotypes are untrue and can hinder getting the support you need.

•Not seeing mental health problems as health problems: even someone with a mental health problem might not see what they are experiencing as a health problem in the same way they may view physical health problems. They might find it difficult to identify with terms like ‘disability’, or even feel they are not entitled to health-related benefits.

•Internal causes of mental health problems: some people believe that mental health problems happen because of something you have done, or that they are easy to fix. For example, some people feel that people with depression just need to ‘cheer up’. Some people may see a mental health problem as a punishment for doing something bad.

There are many more types of stigma and misconceptions you might face in day-to-day life. They may make you feel like you are not entitled to benefits or support even if you are. You are also entitled to respect and fair treatment.

Stephanie’s experience

‘With mental health issues, the suffering isn’t always visible or obvious. I’d say I did feel not believed or taken seriously at times.’

Intersectionality

Often people experience several overlapping types of stigma related to different characteristics. This may be your race, class, gender, sexual orientation or health. Intersectionality is how all these identities work together in your life. It makes a person’s experience of stigma unique.

Prejudice and mistaken beliefs about mental health problems can mix with other misconceptions and forms of discrimination. People who experience multiple types of prejudice often experience worse mental health, as well as barriers to recovery. For example, misconceptions about violence and mental health problems can combine with racist stereotypes. Some people mistakenly believe that some mental health problems make someone dangerous.1 There is also a racist stereotype of Black men being dangerous. When someone believes both these things, they may have a very inaccurate view of what someone’s behaviour means. This can create bias in how someone is treated for a mental health problem.

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Stigma and misconceptions in the benefit system

Staff within the benefit system have very different levels of knowledge about mental health problems. This can have a significant impact on people applying for benefits at all stages of the process.

If someone encounters a staff member who has little knowledge or understanding of mental health, they may be:

•given the wrong information about what benefits they are eligible for;

•put in incorrect work-related groups or given inappropriate work-related requirements;

•overlooked for requests for reasonable adjustments;

•sanctioned inappropriately;

•asked questions that are potentially harmful during assessments;

•not awarded benefits or awarded less benefit than they are entitled to.

Staff might not be aware of their own prejudice or that their beliefs are mistaken, and if you do not have an in-depth knowledge of the benefits system, you might not recognise that decisions are being made unfairly. Mind has advisers with in-depth benefit and mental health knowledge who can help you understand why decisions have been made, and help you challenge them if they have been made unfairly.

Informal observations

Where assessments are required for benefits such as personal independence payment (PIP), assessors make informal observations of how the applicant presents themselves (see here). These observations can have an impact on whether you are awarded the benefit. These observations are often based on misconceptions about mental health problems, including assumptions that:

•because someone can answer a phone, travel or make eye contact that they do not have anxiety;

•symptoms of depression are easy to overcome and are more reflective of laziness;

•if someone is well dressed or well presented that they are not unwell or struggling with their mental health.

Mental health problems affect everyone differently, but many people’s views of mental health are based on stereotypes. This can make it very hard to convey how your mental health problem affects you to someone who has a stereotyped view of mental health problems.

You can request a recording of your assessment (you must usually make the request in advance) or in some cases can make a recording yourself. There is more information here. You can also request a copy of the assessor’s report, which is based on notes made by an assessor during an assessment. If an assessor has made inaccurate observations, you can challenge the decision made about your benefit (see Chapter 17). You can get independent advice about doing this (see ).

Priyanka’s experience

Priyanka told us about the stigma she experienced when applying for PIP.

‘I applied for PIP on the advice of my psychiatrist, my counsellor, my care worker and GP. I had letters from all of my care providers and at the time was under the mental health team after having a breakdown. I was initially dealt with by the crisis team and had crisis help daily in my home.

My husband came with me to the appointment, and I cried for the whole duration, which was one and a half hours.

My results came back saying that I was presentable, well dressed, clean. I had points deducted because of this and because I could use a bank card. [The assessor] never once mentioned the distress I was in or any of the information provided by my care providers. At this time, my husband was giving me my meds, feeding me and being my full-time carer.’

Hayley’s experience

‘I think what they need to take into account is that just because you can do it once, it doesn’t mean you can do it in a normal time frame, repeatedly. Because they have had me come in and I am eloquent and can communicate. But can I do that every day? No. I can do it once. I can do it once and I suffer after. I can’t do it every day.’

Inappropriate questions

Assessments can be upsetting experiences, as assessors sometimes ask for unnecessary details about suicidal thoughts, self-harm, trauma or symptoms of psychosis. These questions are not usually necessary in determining whether someone is eligible for benefits.1 There is more information here.

You have a right to ask why a question is relevant. You can also complain about the way an assessor has treated you (see Chapter 17). You have a right to bring someone to an assessment with you for support, as well as asking for reasonable adjustments that might make you more comfortable handling certain questions. Chapter 14 has more information about assessments, including about reasonable adjustments and being accompanied.

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Challenging stigma and misconceptions

Discrimination

It can be exhausting having to try to challenge these misconceptions yourself, and it should not be your responsibility to educate other people about your mental health problem. Unfortunately, you may find this is the position you are in when making a benefit claim. Advocacy services are available to support you in situations like these, and you can use websites with reliable mental health information such as Mind to try to inform people.1

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Discrimination

There are some cases when being treated unfairly because of certain characteristics is illegal under the Equality Act 2010. This kind of unfair treatment is called discrimination.1

The Equality Act 2010 says you cannot be treated differently or unfairly because of:2s4 EA 2010

•age;

•disability (which can include mental health problems);

•gender reassignment;

•marriage and civil partnership;

•pregnancy and maternity;

•race;

•religion or belief;

•sex;

•sexual orientation.

Discrimination can be unintentional, but it is still illegal. The discrimination could be a one-off action from one person, or the result of a rule or policy. Discrimination includes not putting reasonable adjustments in place when they are needed.

The Equality and Human Rights Commission has more information on disability discrimination and how to challenge it.

Alex, Jo, Benni and Caroline’s experiences

Alex, Jo, Benni and Caroline told us about their experiences of applying for benefits. Their experiences show how different the benefit system can be for individuals with mental health problems depending on the kinds of prejudice they face in the process.

Alex has severe anxiety and obsessive compulsive disorder (OCD), which can be triggered by situations where she feels embarrassed or judged. Alex told us this makes it difficult for her to speak to people over the phone or in person.

‘I overhear people in public slating people who claim benefits because of mental health issues, saying they’re making it up because they are lazy and saying “we’ve all got problems but we work”. It makes you feel incredibly insignificant not being understood.’

For Alex, this stigma was not just from members of the public. She also saw it reflected in the people managing her benefits when she applied for universal credit (UC).

‘I got the impression when talking to professionals about my claim that they didn’t believe me. They wanted more evidence and asked me a lot of personal questions. It’s very nerve wracking for someone who has an anxiety disorder.’

Jo gets UC and personal independence payment (PIP) and had very different experiences with each service based on how much they understood her mental health needs.

‘Universal Credit were amazing with my application. I spoke to multiple different people and they were all really understanding and helped me apply. The work capability section took a long time, but I was awarded it based on the application and contact with my GP. It was great not having to have an interview as that would have set off my anxiety.’

Jo felt that the people handling her UC claim were ’more compassionate about mental health struggles’ than she experienced when applying for PIP.

‘Honestly, applying for PIP for mental health was horrible and very stressful… they don’t understand how much mental health impacts physically as well as mentally. PIP is a very long process. .’

Jo had to appeal her PIP decision as many things the assessor wrote were incorrect or they had misunderstood Jo’s answers.

Benni is also on UC and found her experience was different in different parts of the country.

‘I had support with setting up universal credit as it’s quite complicated. I’ve found universal credit where I applied in the Midlands to be really understanding – they haven’t yet put me through a formal assessment as they judged my capability to work based on the form and information about my PIP. Even before they officially judged my capabilities, they just asked me to do more of the same simple tasks that I was already doing, such as attending groups. I found that universal credit teams where I applied further North did not want to help with anything that was not immediately in their remit.’

Caroline had a very positive experience applying for both UC and PIP. Caroline told us she knows she is fortunate that this was her experience. Caroline’s experience shows how simple the benefits process can be when you have support and when the people within the system understand mental health.

‘I had an assessment for universal credit which said I didn’t have to work if I didn’t want to due to my mental health and physical health. With PIP, I just sent in all the paperwork and they spoke with my CPN [community psychiatric nurse] and I didn’t need a further assessment. It was accepted at enhanced rate for both daily living and mobility.’

Hayley’s experience

Hayley has been on benefits for 15 years and we have used some of her quotes in other parts of this Handbook. She first applied when her mental health problems made it too difficult for her to work. She was experiencing agoraphobia, which meant she could not leave her home. She was also experiencing symptoms of obsessive compulsive disorder (OCD) that meant she spent up to 20 hours a day in ‘checking rituals’.

‘At my worst I was going through OCD checking rituals for safety behaviours 20 hours a day. I was checking gas safety and door locks. I would check physical lumps on my body and think it was cancer. I had health anxiety and severe depression.

I had intrusive thoughts all the time. I would wave at a neighbour and say “hi”, but in my mind I became convinced I had stuck my fingers up at them and told them to f-off. So a simple wave at a neighbour and I could come in and sit for four hours and think it over. I’d sit for four hours thinking “I’m sure I waved, I’m sure I waved”.’

As she was not working, Hayley needed financial support. She researched what benefits she was entitled to online. One of the benefits she applied for was personal independence payment (PIP). Hayley found the process of applying difficult from the very beginning. She felt that the questions on the application applied more to physical health conditions, and had difficulty explaining her experiences. For example, for the question around being able to prepare food, Hayley said:

‘Well, can I go to the kitchen now and prepare some food? Yes. Do I spend three weeks after worried that I have killed someone with food poisoning? Yes I do.’

Her first PIP application was turned down. She appealed the decision and went to tribunal.

‘When I went for the tribunal my husband said he would come with me, but I said I want to go in on my own. Because I need people to throw away their preconceived ideas of what mental health looks like. I deliberately went in on my own and they must have thought “she is here on her own but she is saying she needs benefits?”. But, you know, they needed to throw away their preconceived ideas of me. Some things that are really difficult I can do really well, and some things that are really easy I can’t do at all. So whatever you’re thinking about mental health, just put it to one side.’

After stating her case, Hayley was awarded PIP. Four years after this, Hayley had an unexpected heart attack. As a result, she must take medication long term. Even though her heart attack was serious, Hayley says her mental health problems have always been worse than her heart problem. However, Hayley says she began to notice that now she had a physical health problem, the benefit system and the healthcare system began to treat her differently.

‘I went to the doctors with my mental health and he kind of didn’t get it. And then when I went to him after the heart attack he was completely different. I said to him “my mental health is worse than my heart attack. You didn’t get that. But because I’ve had the heart attack you get it”. I can see that difference.’

When it was time for her PIP to be reviewed, Hayley noticed this difference in the assessment as well.

‘I say to them “please forget that I have had a heart attack. It is my mental health that I am here for” but every time I get awarded PIP I am sure it is because of my heart attack. It feels hopeless. All of a sudden they see medication and they see this, that and the other. I get misrepresented by the heart attack.’

Hayley has also been impacted by the stress of the benefits system. She has had to appeal her PIP decision twice and has been for about 12 assessments for both her PIP and employment and support allowance (ESA). Each time she gets a form, it takes Hayley up to 12 hours to complete it. Each time she goes for a review, she assumes she will have to fight the case again in appeal.

‘As soon as the letter comes through the door I feel sick. Throughout the whole process I feel sick and as if I won’t be believed.’

Hayley has been informed that she may be eligible for other benefits, such as universal credit. However, she cannot manage the idea of having to go through another application process and handle another system.

‘I said to just leave me alone. Don’t stir up the hornet’s nest. Just leave me as I am. I am possibly eligible for a higher rate or a different type that comes with more benefits, but I’m just like ”just leave me alone”. It’s at that stage.’

Hayley is managing on her PIP and ESA currently. Her husband also gets carer’s allowance as he supports her. She has recently had therapy that has made a huge difference to her mental health, but she still needs support. Despite her struggles with the benefits system, she is an advocate for people applying for what they are entitled to.

‘Don’t give up. You deserve to be believed. Do whatever you can. You deserve to be believed.’

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2 s4 EA 2010 »

3. Mental health and the benefit system

The benefit system can be very difficult to understand. It can be difficult to know what rules or benefits apply to you, what reasonable adjustments you may be able to ask for, or how the system should treat you. When you have a mental health problem, these problems can be even more difficult to overcome.

The process of applying for a benefit and managing a benefit claim can affect your mental health, even if you do not have a mental health problem. The application process, claimant commitments, appointments, deadlines and budgeting on the low income that benefits provide can lead to poor mental health. If you already have a mental health problem, this process can make it worse.

The benefits system is not well-designed for people with mental health problems. Some core issues identified by people with lived experience are highlighted in this section, along with suggestions from people with lived experience on how to overcome these issues.

Tips from experience

‘Find a buddy. Don’t do it alone. You might have a lot of guilt, we all do, but you have the right to be ill and pay your bills comfortably.’

Eligibility

Knowing whether you are eligible for benefits when you have a mental health problem can be very difficult. Some of us might feel that the language used in benefits forms and assessments seems more relevant to physical health than mental health. It can be hard to know how your experience fits the questions.

To understand which benefits you are entitled to, you may need to use an online benefits calculator or get help from an independent advice service (see ). Eligibility conditions are set out in each of the benefit chapters of this Handbook.

Inflexible systems

The process of applying for benefits and managing a claim can be very inflexible.

You can ask for reasonable adjustments and additional support to try to help you manage the benefit system (see Chapter 18), but to ask for these changes you may be required to provide evidence and go through other rigid processes.1CPAG, Making Adjustments? The experiences of universal credit claimants with mental health problems, February 2022, available at

1 CPAG, Making Adjustments? The experiences of universal credit claimants with mental health problems, February 2022, available at »

Repeating information

Over the course of a benefit claim, you might have to explain your mental health problem many times. This might be for different benefit claims, during reviews or reassessments, or during mandatory reconsiderations and appeals. It can be both draining and re-traumatising to have to explain your situation over and over again. This can prevent some people from claiming additional benefits, or trigger mental health symptoms due to the stress of having to repeat a story.

Hayley’s experience

Hayley gets PIP and ESA. When she goes for a review, she has to repeat her story in full, every time.

‘I wish they would look historically at your trail. Because when you go to a person again to see them they don’t know anything about you. And they don’t link. Like I’m on two benefits – ESA and PIP – and instead of calling me in independently for each one why don’t you just link and do it as one?’

Form filling

Many symptoms of mental health problems can make completing forms difficult, but the forms themselves can often be hard to understand. For benefits such as personal independence payment (PIP), disability living allowance (DLA) and attendance allowance, many questions use examples and wording related to physical health. Despite the fact that mental health problems are relevant for these benefits, the questions might not always seem to cover your experiences or the variability you might have in your condition. Benefit forms make it very difficult to explain how changeable some mental health problems can be.

Without an explanation of how these questions may apply to a mental health problem, you might not feel you can convey the extent of your problem. This could lead to you being awarded an incorrect amount of benefit or no benefit at all.

For information and tips about filling in a form for a particular benefit, see the chapter about that benefit in this Handbook.

Tips from experience

‘Ask family or friends for help filling in forms, or a professional. They know how to phrase things better.’

‘Take lots of time to consider the questions on the forms and if necessary complete them over several days. It doesn’t have to be done all at once.’

‘Keep copies of all the forms you send off so that you can refer back to your answers if you need to attend an assessment.’

Evidence requirements

Health-related benefits require evidence. This can be difficult to obtain for a mental health problem, particularly if you do not have a diagnosis or are on a waiting list for treatment. While evidence such as statements from people close to you is also accepted, this is not always clear. The focus on medicalised evidence can make proving the extent of your mental health problem very difficult and does not reflect the reality of getting help for a mental health problem, which is affected by long waiting lists and short treatment times for many people.

Chapter 13 has more information and tips about supporting evidence.

Tips from experience

‘Get evidence for everything possible and perhaps even highlight the relevant parts so they cannot be overlooked.’

‘Photocopy everything you send.’

Communication

The benefit system has default forms of communication. Universal credit (UC) claims are online, unless requested otherwise, and many other benefit processes involve sending letters. While these forms of communication may be changed as a reasonable adjustment (see here), if you are new to the benefits system or are experiencing a mental health problem that makes asking for this help difficult, you may be faced with having to deal with a form of communication that increases your distress. For example, if you struggle to get out of bed due to your mental health, you may miss letters that are posted to you. This can lead to sanctions.

Many people find that they need things explained in a different way, or need extra time to process questions. People with lived experience told us that they often do not feel there is space to do this during benefits assessments and interviews.1Mind survey of lived experience 2022, available at

Chapter 18 has more information about support within the benefits system, including reasonable adjustments.

Tips from experience

‘If your condition makes it hard to go out, you can ask for phone appointments instead [of in person appointments].’

‘Get a trusted advocate so they can talk/write to the DWP staff if you are unable to.’

1 Mind survey of lived experience 2022, available at »

Appointments and assessments

While the pandemic has shifted the heavy reliance on in-person appointments for benefits, the number of appointments required throughout a benefit claim can be overwhelming.

Sometimes, assessments can be distressing. Whether they are in person, by video or over the phone, they can put a lot of pressure on someone with a mental health problem to convey what they are going through, often to someone that has very little knowledge of mental health problems. The applicant may be asked very triggering and upsetting questions that can be a potential safeguarding issue.

Chapter 13 has more information and tips about assessments.

Tips from experience

‘Never be afraid to query any questions asked and make sure you take the opportunity to say everything you want, regardless of how your interviewer reacts or tries to curtail your appointment.’

‘Take someone with you who is aware of your health issues.’

Martin’s experience

‘The assessor asked weird questions. I tried to tell her about my extreme OCD [Obsessive Compulsive Disorder] but all the questions were about which hand I write with. In her report, she wrote that I was clean and did not look malnourished. This triggered me. I was thinking I must be fat. It made me feel so ill and watch my food intake.’

Deadlines

The benefit system involves a lot of deadlines, from deadlines when your forms need to be submitted to deadlines for updating your details on an existing claim. This can make you feel very pressured. Some people experience constant fear that they are missing a deadline or that they have not submitted important information and will be sanctioned, even if there are no deadlines they need to keep.1 Deadlines can sometimes be extended quite easily by asking, but people often do not know about this.

For information about deadlines and extensions for a particular benefit, see the chapter about that benefit in this Handbook.

What advisers say: dealing with deadlines

‘Fear can take over and get in the way. In one case, someone was so desperate to get away from worry that they posted a reply straightaway before talking it through with an adviser. In another, with everything worked out with an adviser, there was a fear of letting go of the form and allowing it to drop into the letter box.’

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Work-related requirements

People with mental health problems often find they have not been placed in the correct work requirement group for benefits such as UC. This can be because of professionals’ prejudice or because other issues in the benefit system mean someone is not able to convey how much their mental health problem is really affecting them. Someone who needs time to get well may be forced to search for jobs or take on work that makes their mental health worse. Stigma and misconceptions around mental health might mean staff misunderstand this as laziness, rather than a symptom of a mental health problem.

Chapter 15 has more information about work-related requirements, including about getting these changed.

Tip from experience

‘Be honest and open about your struggles to the job coach. Let them know just how much you struggle.’

Reassessments and reviews

Benefits such as PIP and DLA normally need to be reviewed or reassessed depending on the length of your award. For some people, this can be an upsetting process, particularly if your initial assessment was not a good experience. You may be required to go over traumatic details again. The stress of the assessment, as well as uncertainty about whether you will be able to keep your award, can be overwhelming.

Each benefit chapter in the Handbook has information about reviews and reassessments for that benefit.

Sanctions

The threat of benefit sanctions is stressful for most people on benefits, however people with mental health problems report that worries about sanctions have a significant impact on their lives. A sanction can be the difference between getting by financially and being unable to keep yourself safe, which can be a significant risk. Information about sanctions is often worded very bluntly, in letters or online messages on a UC journal. This can leave someone dealing with unexpected news in a very vulnerable position.

Chapter 15 has more information about sanctions, including about how to challenge them.

Appeals and mandatory reconsiderations

Being turned down for benefits or getting an award which is lower than you were expecting can be very upsetting. Despite the fact that many mandatory reconsiderations and appeals are successful, the process you need to go through can be overwhelming. The intitial rejection may make you feel like there is no point continuing, and you might need encouragement and support to carry on with the process, if that is what you decide to do.

There is more information about challenging benefit decisions in Chapter 17, including tips for writing a mandatory reconsideration request and preparing for an appeal.

Tip from experience

‘If you disagree with a decision you can [usually] appeal it. This may be stressful, but you can ask family, friends and services to help you through this.’

Kevin’s experience

Kevin was on health-related benefits for 15 years as his mental health made him too unwell to work.

‘It has always felt like a nightmare- at first I had no idea how the system worked, what I could apply for, what the criteria were, how long anything took. Plus there was the huge guilt and fear.’

Kevin found it hard to find out what he was entitled to.

‘I was bouncing around between the job centre and the GP and hospitals and being given lots of different information, usually with the attitude of “why aren’t you applying for this? Why haven’t you sorted this yet?”’

‘I was given very little support throughout the process…I didn’t know at first that I needed support. I just got a form and started filling it in. I didn’t know…that I had to be careful how I answered things. The form was strongly leaning towards physical symptoms so I skipped questions about walking outside or communicating, even though I found these things very hard from a mental health perspective.’

Kevin was eventually awarded health related benefits, but this wasn’t the end of his benefits journey. The reviews that were needed during his time on benefits caused more stress.

‘Once I had [health-related benefits], that opened the doors for other benefits and having that stability of income was a huge deal. But the background terror would come back every two to three years when I [was reviewed or] had to apply again.

‘I am not sure how many times I went through application, rejection, mandatory reconsideration, tribunal, award. It would take months’

‘Later I discovered [online benefit advice websites] and started using their guides. The process made a lot more sense once I had all their guides, but it was a lot of reading and digesting and taking notes and cross-referencing my answers. Getting the form together now made more sense, and I felt I was creating a strong application, but it took weeks to work on, and I was doing it alone.

Collecting evidence was always a hugely difficult part of it. Partly because you had to go and ask for it and tell them what you wanted them to say – it felt a big imposition on a GP or therapist. And partly because sometimes you didn’t have any evidence.’

Kevin didn’t get support when applying for benefits.

‘I didn’t go to others for advice partly, I think, from that background fear of thinking I didn’t really deserve benefits. I wasn’t ill enough, I should be trying harder. And partly because to fill in the form I had to write in detail about every little thing I found difficult, and I couldn’t face telling a friend or someone about it all.’

4. Getting support

When Mind asked people with lived experience of mental health problems and the benefit system what their advice would be to someone claiming benefits for the first time, most people recommended getting support to make your claim.1Mind survey of lived experience 2022 available at

The support could be from an independent advice service (see ) or from a friend or family member. See Appendix 2 for advice and support organisations. The support you need will depend on a variety of factors and it is important to find the right support for you. People with lived experience told us the kind of support they find helpful includes the following.

•Help with research, such as:

◦looking up what benefits they might be entitled to;

◦finding what professional support they might be able to get.

•Help with questions on forms, such as:

◦reading through the questions with them;

◦helping them understand the questions;

◦writing answers to questions for them;

◦proof reading forms they have completed themselves.

•Help during interviews, such as:

◦emotional support;

◦advocating for their needs;

◦acting as proof that the person needs support.

•Help with evidence, such as:

◦writing a statement that can act as evidence;

◦helping them contact professionals for evidence;

◦helping them figure out what kind of evidence they need.

•Help with practical tasks, such as:

◦making phone calls;

◦opening letters;

◦organising forms;

◦reminding them of appointments or when to update details.

•Emotional support throughout the process.

The support someone needs is very individual. If you are seeking support, it is OK to be clear and upfront about what tasks you need help with most. If you are supporting someone else, make sure they feel comfortable telling you what they find helpful and do not make assumptions about what they can or cannot do.

Having support to make a benefits claim and throughout the benefits process, can make a big difference in the success of your claim and your wellbeing.

There is more information about support in Chapter 18.

If you are an adviser supporting someone with a mental health problem, see Chapter 3 too.

Judy and Eliza’s experience

Judy supported her daughter Eliza when she needed to apply for benefits. Just before her first benefits claim, Eliza had been sectioned and spent almost a year in hospital for her mental health. Before leaving hospital, Judy was told that hospital staff had helped Eliza apply for universal credit (UC). Judy later found out that a nurse had simply accompanied Eliza to the Job Centre for her appointment.

‘[The nurse] didn’t engage in any of the discussion regarding the application. Eliza was embarrassed to talk about her illness and the Job Centre were not told about it. Nobody advocated for her. As a result, she was put on basic universal credit and told that she must spend 35 hours a week job searching.’

After leaving hospital, Eliza started to become unwell as ‘she was only focused on thinking she had to get a job or she would have no money’.

Judy researched online about UC. She asked Eliza if she could come with her to her next UC appointment where she was able to help advocate for her.

‘We were able to ask for a work capability assessment, but the form took nearly four weeks to arrive.Completing the forms was a marathon and had I not helped she would have been completely unable to do it herself.’

Judy’s support was essential in getting Eliza the help she needed and was entitled to. Eliza gave Judy permission (‘explicit consent’ – see here) to deal with her UC account, which allowed Judy to explain Eliza’s health problems and discuss other elements of her UC award.

Through Judy’s help, Eliza was given an alternative payment arrangements so her rent is paid directly to her housing association (see here).

Judy also helped Eliza apply for personal independence payment (PIP).

‘Everything I have read suggests that it is hard to qualify [for PIP with mental health problems]. But Eliza’s latest Care Coordinator strongly recommended that Eliza apply for PIP and wrote a very supportive letter to send as evidence.’

Eliza’s mental health problems make it difficult for her to concentrate and remember things. This makes many of the benefits forms difficult for her to complete on her own.

‘I spent many hours over several days helping Eliza complete the PIP form. I asked the questions, we talked about how she is affected and I wrote down everything she said. There was no way that she could have completed the form on her own or have understood what level of detail was required.’

With Judy’s support, Eliza has been able to get the benefits she is entitled to. Judy recognises how important it is to have support during this process.

‘It is like climbing a mountain in gym shoes for those who are unwell and have no one to help them.’

1 Mind survey of lived experience 2022 available at »

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Chapter 2: Mental health and benefits

Mental Health and Benefits Handbook 1st edition

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