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UK banker being kept alive against wishes of family and doctors

An investment banker who sustained severe brain damage after a cardiac arrest is being kept alive against the wishes of his family and doctors because the official solicitor has intervened to prevent his death.

The unusual case, which is likely to be referred to the supreme court for an emergency hearing, tests whether relatives and medical staff must seek judicial permission before life-support treatment is withdrawn.

On Monday, Mrs Justice O’Farrell ruled in the high court that the court of protection does not need to be consulted in cases, such as that of “Mr Y”, where clinicians and the patient’s family agree that it is not in the best interests of the patient to be kept alive in a coma.

However the judge anticipated that the official solicitor would appeal against her decision. It is normal practice in such cases for treatment to continue until the legal disputes are resolved.

Mr Y, 52, is said to be unaware of either himself or his environment. Before his cardiac arrest in June, he was very active despite working long hours in a stressful profession. He ran and skiied, regularly went to the gym and was said to have loved music and rock concerts. He had not left a living will or any instructions on what should happen to him in the case of sudden illness.

His wife, their two children, and his brother and sister, the court was told, all accepted that Mr Y would not want to live in a vegetative or minimally conscious state with profound disabilities.

“He would hate to be helpless and dependent on other people for his daily needs,” the judgment said. “He would not want to live in a care home.”

The judge concluded there was no legal obligation “that all cases concerning the withdrawal of CANH [clinically assisted nutrition and hydration] from a person who lacks capacity must be sanctioned by the court”.

O’Farrell cited a landmark judgment in another case, saying it had clearly established that principle. Where doctors had obeyed the Mental Capacity Act and good medical practice, where there was no dispute with the family or others close to the patient, and there were no other doubts or concerns, there was no need to bring the matter before the court, she said.

The earlier ruling, by Mr Justice Jackson, marked a significant change in how end of life cases are handled and sought to do away with unnecessary litigation for families at times of emotional strain.

It was thought that the official solicitor, who provides legal representation in cases for those unable to participate, would appeal against Jackson’s decision in September but this did not happen.

The legal dispute was now expected to be fought over Mr Y’s case, which was initiated by Vikram Sachdeva QC on behalf of the unnamed NHS trust that is treating him. The 39 Essex Chambers barrister applied to the high court for a declaration that it is not mandatory to seek judicial permission to end life-supporting treatment in such cases.

It is thought that the official solicitor is applying to the supreme court for an emergency hearing, skipping the court of appeal because of the importance of the case. It likely to trigger interventions by right to life campaigners.

If treatment was withdrawn by the NHS hospital treating Y, O’Farrell said, he would probably die within two to three weeks.

As long ago as 1993, n the case of Anthony Bland, a Hillsborough survivor who was left in a persistent vegetative state, the courts established that it was legal to stop providing treatment – including food and water – if it was deemed to be in the patient’s best interests.

Citing the Bland case, O’Farrell observed in Y’s case that “the right to life is not absolute. As a matter of principle the withdrawal of CANH from a person who lacks capacity, resulting in death, may be lawful where it is not in his best interests to continue such treatment.”

According to recent estimates there are 4,000 to 16,000 patients in a vegetative state in the UK, with many more in what is described as a minimally conscious state.

The Ministry of Justice, which handles inquiries on behalf of the official solicitor, did not immediately comment on the case.

‘I have lost hope’: the people with mental health problems who are being stripped of their benefits

Kloey Clarke, 28, from Devizes in Wiltshire, has had severe anxiety and type II bipolar disorder for six years. “I’m scared to leave the house,” says Clarke, who does not feel emotionally or physically stable enough to hold down a job and relies on her husband for care and support. “I have a constant fear of dying. I can’t socialise and I can’t communicate outside [the house].” For four years, Clarke depended on a Disability Living Allowance (DLA). The DLA was replaced by Personal Independence Payments (PIPs) in 2012 – and phased in from 2013 – but she was receiving them for less than a year before she was reassessed by the Department for Work and Pensions (DWP) and told she no longer qualified.

Clarke believes that the assessment for PIP is aimed at people with physical disabilities and does not account for mental illness. “I was asked if I could walk 200 metres unaided. No, I don’t need a stick or an aid, but I do need my husband or someone with me. Can I talk to people face to face? I talk to my family when they visit, but can I speak to strangers? No.”

She has had panic attacks as a consequence of losing her benefits, she says, and her family is now struggling financially. They have had to visit food banks twice since being rejected for PIP, but Clarke’s pride has stopped her from going more frequently. “I just find it so degrading. I don’t feel as if I should be there. I feel that, if I just had what I deserve, then I wouldn’t need to be in that place; I wouldn’t need to take food from, say, homeless people.”

Clarke’s marriage and her relationship with her children are suffering. “I’m useless to them, I’m not half the mum that I could be. I haven’t got enough funds. The government has no idea what these types of assessments do to people with mental health [issues]; how much it takes to walk into that room and talk about something so personal and then be told you aren’t ill enough.”

The evidence is mounting that people with mental health problems in particular are being failed by PIPs, with claimants reporting that the new system takes no account of the needs of people with conditions ranging from schizophrenia to severe depression. Figures released by the DWP in October showed that complaints about the PIP assessment process increased by 880% last year. The number of complaints that were upheld rose similarly dramatically, by 713%.

The DLA was first introduced in 1992 by John Major’s Conservative government and was paid to eligible claimants who had personal care or mobility needs as a consequence of a physical or mental disability. PIPs were introduced by the coalition government as part of the 2012 Welfare Reform Act, and have been steadily replacing the DLA since 8 April 2013. Some claimants who received indefinite DLA awards were not being reassessed, and the government then argued that it was necessary to have a system that frequently assessed people in order to determine if their needs had changed over time. In 2013, the then work and pensions secretary Iain Duncan Smith told the Daily Mail that “70% of people on it [DLA] have lifetime awards, which means no one sees you ever again. It doesn’t matter if you get better or your condition worsens – it’s quite ridiculous.”


The assessor’s concerns were about what the reflection would be on her if I did go out of the door and kill myself

The big differences between PIP and DLA claims arise from the assessment criteria. DLA is based on an individual’s condition and the needs arising from this, while entitlement to PIP is assessed using a points-based system. Claimants are typically invited to a face-to-face assessment in a private consultation room, but are sometimes assessed in their homes. People score points according to their ability to complete a number of everyday activities, such as washing and cooking, and whether they need aids and appliances or help from another person to do so. According to Full Fact, an independent factchecking charity, between October 2013 and October 2016, 22% of DLA claimants with mental health conditions had their benefits reduced when they were reassessed for PIP, and a further 25% lost them altogether.

Many of the people I speak to say the PIP assessments do not take into account the effect their mental health conditions have on their lives. Some say that, even though they are physically capable of preparing a meal, driving a car, or dressing and washing themselves, the ability to do these things changes all the time. This is especially the case with conditions such as clinical depression or bipolar disorder, when, on some days, a person may find it difficult to get out of bed.

Daniel O’Connor, 64, from Glasgow, has led a tough life. He has severe depression and adjustment disorder, and has twice attempted to end his life. O’Connor had been receiving DLA for nearly 22 years when, this year, his application for a PIP was rejected. Since then, he has experienced financial hardship and says his condition has worsened. O’Connor says he felt as if he wasn’t being listened to at his PIP assessment and recalls telling the assessor that on some days he struggles to get out of bed because his depression is so debilitating. However, his assessor dismissed his story, citing the fact that he could drive as evidence of his ability to carry out everyday tasks. “We got to discussing a previous suicide attempt I had [made],” he says. In the final moments of the interview, the assessor asked him seven times if he was going to go out of the door, there and then, and kill himself. O’Connor adds he found himself in the position of having to placate the assessor. “It seems to me that her concerns were not about me; her concerns were about what the reflection would be on her if I did go out of the door and kill myself.”

Rejected PIP applicants have the right to appeal the decisions made by the DWP, and statistics from the Ministry of Justice show that 65% of appeals are ruled in favour of the claimant. Campaigners say this demonstrates a systemic ineptitude in the way the assessment criteria are being interpreted.

Alison Smith with her husband, Mark, at home in Beverley.


Alison Smith with her husband, Mark, at home in Beverley. Photograph: Darren O’Brien/Guzelian

Alison Smith, 55, from Beverley in Yorkshire, cares for her husband, Mark, who has bipolar disorder. Mark “is unable to go out without someone with him or socialise”, she says. He can go for days without washing, dressing or eating. He will neglect his medication if not reminded and has self-harmed. The couple have lost other benefits, including their housing benefit, since losing PIP and they have been relying on a lump sum from Alison’s pension to get by.

Alison had a difficult time at her husband’s appointment. “The woman who did the assessment was horrible. She wouldn’t let Mark speak. When he tried to say anything, she kept saying: ‘No, I’m not interested in that – I need to go through what’s on this computer.’ They don’t look at the mental illness side of things. Mark has the [physical] ability to make a sandwich, but he doesn’t have the mental ability to do it.”

“Often, we hear from people with mental health problems who tell us that they dread the face-to-face assessments,” says Paul Spencer, policy and campaigns manager at the mental health charity Mind. Spencer adds that, as well as reforms to the Work Capability Assessment, used to determine one’s eligibility for Employment Support Allowance (ESA), “we also urgently need the government to overhaul the PIP assessment process to make sure it is fit for purpose – and delivered by people who really understand how someone’s mental health problem can affect their daily life”.

Lorna Crofta’s story illustrates this lack of understanding. Crofta, 53, from Worcester, has had severe mental health problems since childhood. She was awarded DLA for three years and then invited to apply for PIP this year. Her application was refused because she failed to attend her assessment – she had received a diagnosis of bowel cancer and the assessment was scheduled just before an operation to have a tumour removed. “I had come to a complete standstill physically, and that had an additional impact on my mental health. I hadn’t even opened my post for weeks and had gone beyond thinking in a rational manner about anything. I would not have been able to handle someone being in my house.” Crofta says she has been living in poverty all her life. Even before losing her DLA, she says, the benefit wasn’t allowing her to do much apart from securing basic subsistence. “My life is just existing between one appointment and the next. I have lost hope. I dread how much worse things will be if my appeal is turned down.”

Lorna Crofta in Worcester.


Lorna Crofta in Worcester. Photograph: David Sillitoe for the Guardian

The shadow work and pensions secretary, Debbie Abrahams, has seen first-hand some of the hardships disabled people are facing as a result of the government’s welfare reforms. “The number of cases I get, not just in my constituency but right across the country, is shameful – and shameful on the country as a whole,” she says, from her constituency office in Oldham. The system, she argues, is designed to put people off and to stop them claiming, “and, unfortunately, it’s working”. Abrahams adds that the assessors need to be held to account: “The fact that two-thirds of assessments are overturned on appeal just shows the fact that it is a warped system.”

The DWP responds: “PIP looks specifically at how someone’s life is affected by mental health, unlike the old system, which did not sufficiently recognise mental health problems.” They add that there are now more people with a mental health condition receiving the higher rates of PIP than their DLA equivalents. “PIP ensures that mental health conditions are given the same recognition as physical ones. It does this by considering how impairments affect a person’s life, rather than labelling individuals on the basis of a condition.”


My life is just existing between one appointment and the next

In February, the DWP was advised by judges at the Tribunals Service (the branch of the Ministry of Justice that oversees tribunals and adjudications) to award more points on the mobility assessment of the claim if people suffer from “overwhelming psychological distress”. However, because of concerns that these changes would cost an extra £3.7bn by 2022, the government enacted legislation reversing the judgment: it altered the mobility criteria to exclude people who had psychological distress – specifically, psychological distress caused by following the route of a familiar or unfamiliar journey when travelling alone. The move will mean that 292,500 claimants will no longer be entitled to any mobility component, which could affect people with a wide range of conditions including learning disabilities, autism, schizophrenia, anxiety conditions, social phobias and early-stage dementia. The government argued that the judgment had “interpreted the assessment criteria for PIP in ways that are different to what was originally intended”.

In April, Valerie Grant, 73, killed herself after her severely autistic son was told he did not qualify for disability benefits. Her death came after a UN report, published in November 2016, concluded that the UK government has failed to uphold the rights of disabled people, a verdict the UN reached again this August. Areas of concern highlighted in the UN’s report are high levels of poverty for disabled people and their families and reduced standards of living as a result of multiple welfare reforms and benefit cuts. One of the welfare reforms highlighted for criticism is the criteria used to assess people for PIPs.

In response to the UN’s findings, the DWP said: “We’re disappointed that this report does not accurately reflect the evidence we gave to the UN, and fails to recognise all the progress we’ve made to empower disabled people in all aspects of their lives.” It added that the government spends over £50bn a year to support disabled people and those with health problems and that “it is encouraging that almost 600,000 disabled people have moved into work in the UK over the last four years”.

Abrahams says that Labour, if elected to government, would aim to scrap both the Work Capability Assessment, the ESA and the PIP assessment, and devise a system that doesn’t look for ways to stop someone’s support. She says: “First of all, we should recognise and value what our social security system is for, and I make it absolutely clear it should be like the NHS. It is there for everyone in their time of need and we should value it.” In the meantime, disabled people will have to continue to battle the DWP for access to benefits.

O’Connor says he has experienced financial hardship since losing his benefit, but that has been mitigated by the fact that he is approaching state pension age, and the fact that he receives money from private pensions. “I’m very lucky that I’m in a situation where I will not be made homeless, but, even if I was, I still wouldn’t give up. They could sanction me to death, but I will not be doing their job for them; I will not be killing myself.”

In the UK, the Samaritans can be contacted on 116 123. In the US, the National Suicide Prevention Lifeline is 1-800-273-8255. In Australia, the crisis support service Lifeline is 13 11 14. Other international suicide helplines can be found at www.befrienders.org.

‘I have lost hope’: the people with mental health problems who are being stripped of their benefits

Kloey Clarke, 28, from Devizes in Wiltshire, has had severe anxiety and type II bipolar disorder for six years. “I’m scared to leave the house,” says Clarke, who does not feel emotionally or physically stable enough to hold down a job and relies on her husband for care and support. “I have a constant fear of dying. I can’t socialise and I can’t communicate outside [the house].” For four years, Clarke depended on a Disability Living Allowance (DLA). The DLA was replaced by Personal Independence Payments (PIPs) in 2012 – and phased in from 2013 – but she was receiving them for less than a year before she was reassessed by the Department for Work and Pensions (DWP) and told she no longer qualified.

Clarke believes that the assessment for PIP is aimed at people with physical disabilities and does not account for mental illness. “I was asked if I could walk 200 metres unaided. No, I don’t need a stick or an aid, but I do need my husband or someone with me. Can I talk to people face to face? I talk to my family when they visit, but can I speak to strangers? No.”

She has had panic attacks as a consequence of losing her benefits, she says, and her family is now struggling financially. They have had to visit food banks twice since being rejected for PIP, but Clarke’s pride has stopped her from going more frequently. “I just find it so degrading. I don’t feel as if I should be there. I feel that, if I just had what I deserve, then I wouldn’t need to be in that place; I wouldn’t need to take food from, say, homeless people.”

Clarke’s marriage and her relationship with her children are suffering. “I’m useless to them, I’m not half the mum that I could be. I haven’t got enough funds. The government has no idea what these types of assessments do to people with mental health [issues]; how much it takes to walk into that room and talk about something so personal and then be told you aren’t ill enough.”

The evidence is mounting that people with mental health problems in particular are being failed by PIPs, with claimants reporting that the new system takes no account of the needs of people with conditions ranging from schizophrenia to severe depression. Figures released by the DWP in October showed that complaints about the PIP assessment process increased by 880% last year. The number of complaints that were upheld rose similarly dramatically, by 713%.

The DLA was first introduced in 1992 by John Major’s Conservative government and was paid to eligible claimants who had personal care or mobility needs as a consequence of a physical or mental disability. PIPs were introduced by the coalition government as part of the 2012 Welfare Reform Act, and have been steadily replacing the DLA since 8 April 2013. Some claimants who received indefinite DLA awards were not being reassessed, and the government then argued that it was necessary to have a system that frequently assessed people in order to determine if their needs had changed over time. In 2013, the then work and pensions secretary Iain Duncan Smith told the Daily Mail that “70% of people on it [DLA] have lifetime awards, which means no one sees you ever again. It doesn’t matter if you get better or your condition worsens – it’s quite ridiculous.”


The assessor’s concerns were about what the reflection would be on her if I did go out of the door and kill myself

The big differences between PIP and DLA claims arise from the assessment criteria. DLA is based on an individual’s condition and the needs arising from this, while entitlement to PIP is assessed using a points-based system. Claimants are typically invited to a face-to-face assessment in a private consultation room, but are sometimes assessed in their homes. People score points according to their ability to complete a number of everyday activities, such as washing and cooking, and whether they need aids and appliances or help from another person to do so. According to Full Fact, an independent factchecking charity, between October 2013 and October 2016, 22% of DLA claimants with mental health conditions had their benefits reduced when they were reassessed for PIP, and a further 25% lost them altogether.

Many of the people I speak to say the PIP assessments do not take into account the effect their mental health conditions have on their lives. Some say that, even though they are physically capable of preparing a meal, driving a car, or dressing and washing themselves, the ability to do these things changes all the time. This is especially the case with conditions such as clinical depression or bipolar disorder, when, on some days, a person may find it difficult to get out of bed.

Daniel O’Connor, 64, from Glasgow, has led a tough life. He has severe depression and adjustment disorder, and has twice attempted to end his life. O’Connor had been receiving DLA for nearly 22 years when, this year, his application for a PIP was rejected. Since then, he has experienced financial hardship and says his condition has worsened. O’Connor says he felt as if he wasn’t being listened to at his PIP assessment and recalls telling the assessor that on some days he struggles to get out of bed because his depression is so debilitating. However, his assessor dismissed his story, citing the fact that he could drive as evidence of his ability to carry out everyday tasks. “We got to discussing a previous suicide attempt I had [made],” he says. In the final moments of the interview, the assessor asked him seven times if he was going to go out of the door, there and then, and kill himself. O’Connor adds he found himself in the position of having to placate the assessor. “It seems to me that her concerns were not about me; her concerns were about what the reflection would be on her if I did go out of the door and kill myself.”

Rejected PIP applicants have the right to appeal the decisions made by the DWP, and statistics from the Ministry of Justice show that 65% of appeals are ruled in favour of the claimant. Campaigners say this demonstrates a systemic ineptitude in the way the assessment criteria are being interpreted.

Alison Smith with her husband, Mark, at home in Beverley.


Alison Smith with her husband, Mark, at home in Beverley. Photograph: Darren O’Brien/Guzelian

Alison Smith, 55, from Beverley in Yorkshire, cares for her husband, Mark, who has bipolar disorder. Mark “is unable to go out without someone with him or socialise”, she says. He can go for days without washing, dressing or eating. He will neglect his medication if not reminded and has self-harmed. The couple have lost other benefits, including their housing benefit, since losing PIP and they have been relying on a lump sum from Alison’s pension to get by.

Alison had a difficult time at her husband’s appointment. “The woman who did the assessment was horrible. She wouldn’t let Mark speak. When he tried to say anything, she kept saying: ‘No, I’m not interested in that – I need to go through what’s on this computer.’ They don’t look at the mental illness side of things. Mark has the [physical] ability to make a sandwich, but he doesn’t have the mental ability to do it.”

“Often, we hear from people with mental health problems who tell us that they dread the face-to-face assessments,” says Paul Spencer, policy and campaigns manager at the mental health charity Mind. Spencer adds that, as well as reforms to the Work Capability Assessment, used to determine one’s eligibility for Employment Support Allowance (ESA), “we also urgently need the government to overhaul the PIP assessment process to make sure it is fit for purpose – and delivered by people who really understand how someone’s mental health problem can affect their daily life”.

Lorna Crofta’s story illustrates this lack of understanding. Crofta, 53, from Worcester, has had severe mental health problems since childhood. She was awarded DLA for three years and then invited to apply for PIP this year. Her application was refused because she failed to attend her assessment – she had received a diagnosis of bowel cancer and the assessment was scheduled just before an operation to have a tumour removed. “I had come to a complete standstill physically, and that had an additional impact on my mental health. I hadn’t even opened my post for weeks and had gone beyond thinking in a rational manner about anything. I would not have been able to handle someone being in my house.” Crofta says she has been living in poverty all her life. Even before losing her DLA, she says, the benefit wasn’t allowing her to do much apart from securing basic subsistence. “My life is just existing between one appointment and the next. I have lost hope. I dread how much worse things will be if my appeal is turned down.”

Lorna Crofta in Worcester.


Lorna Crofta in Worcester. Photograph: David Sillitoe for the Guardian

The shadow work and pensions secretary, Debbie Abrahams, has seen first-hand some of the hardships disabled people are facing as a result of the government’s welfare reforms. “The number of cases I get, not just in my constituency but right across the country, is shameful – and shameful on the country as a whole,” she says, from her constituency office in Oldham. The system, she argues, is designed to put people off and to stop them claiming, “and, unfortunately, it’s working”. Abrahams adds that the assessors need to be held to account: “The fact that two-thirds of assessments are overturned on appeal just shows the fact that it is a warped system.”

The DWP responds: “PIP looks specifically at how someone’s life is affected by mental health, unlike the old system, which did not sufficiently recognise mental health problems.” They add that there are now more people with a mental health condition receiving the higher rates of PIP than their DLA equivalents. “PIP ensures that mental health conditions are given the same recognition as physical ones. It does this by considering how impairments affect a person’s life, rather than labelling individuals on the basis of a condition.”


My life is just existing between one appointment and the next

In February, the DWP was advised by judges at the Tribunals Service (the branch of the Ministry of Justice that oversees tribunals and adjudications) to award more points on the mobility assessment of the claim if people suffer from “overwhelming psychological distress”. However, because of concerns that these changes would cost an extra £3.7bn by 2022, the government enacted legislation reversing the judgment: it altered the mobility criteria to exclude people who had psychological distress – specifically, psychological distress caused by following the route of a familiar or unfamiliar journey when travelling alone. The move will mean that 292,500 claimants will no longer be entitled to any mobility component, which could affect people with a wide range of conditions including learning disabilities, autism, schizophrenia, anxiety conditions, social phobias and early-stage dementia. The government argued that the judgment had “interpreted the assessment criteria for PIP in ways that are different to what was originally intended”.

In April, Valerie Grant, 73, killed herself after her severely autistic son was told he did not qualify for disability benefits. Her death came after a UN report, published in November 2016, concluded that the UK government has failed to uphold the rights of disabled people, a verdict the UN reached again this August. Areas of concern highlighted in the UN’s report are high levels of poverty for disabled people and their families and reduced standards of living as a result of multiple welfare reforms and benefit cuts. One of the welfare reforms highlighted for criticism is the criteria used to assess people for PIPs.

In response to the UN’s findings, the DWP said: “We’re disappointed that this report does not accurately reflect the evidence we gave to the UN, and fails to recognise all the progress we’ve made to empower disabled people in all aspects of their lives.” It added that the government spends over £50bn a year to support disabled people and those with health problems and that “it is encouraging that almost 600,000 disabled people have moved into work in the UK over the last four years”.

Abrahams says that Labour, if elected to government, would aim to scrap both the Work Capability Assessment, the ESA and the PIP assessment, and devise a system that doesn’t look for ways to stop someone’s support. She says: “First of all, we should recognise and value what our social security system is for, and I make it absolutely clear it should be like the NHS. It is there for everyone in their time of need and we should value it.” In the meantime, disabled people will have to continue to battle the DWP for access to benefits.

O’Connor says he has experienced financial hardship since losing his benefit, but that has been mitigated by the fact that he is approaching state pension age, and the fact that he receives money from private pensions. “I’m very lucky that I’m in a situation where I will not be made homeless, but, even if I was, I still wouldn’t give up. They could sanction me to death, but I will not be doing their job for them; I will not be killing myself.”

In the UK, the Samaritans can be contacted on 116 123. In the US, the National Suicide Prevention Lifeline is 1-800-273-8255. In Australia, the crisis support service Lifeline is 13 11 14. Other international suicide helplines can be found at www.befrienders.org.

‘I have lost hope’: the people with mental health problems who are being stripped of their benefits

Kloey Clarke, 28, from Devizes in Wiltshire, has had severe anxiety and type II bipolar disorder for six years. “I’m scared to leave the house,” says Clarke, who does not feel emotionally or physically stable enough to hold down a job and relies on her husband for care and support. “I have a constant fear of dying. I can’t socialise and I can’t communicate outside [the house].” For four years, Clarke depended on a Disability Living Allowance (DLA). The DLA was replaced by Personal Independence Payments (PIPs) in 2012 – and phased in from 2013 – but she was receiving them for less than a year before she was reassessed by the Department for Work and Pensions (DWP) and told she no longer qualified.

Clarke believes that the assessment for PIP is aimed at people with physical disabilities and does not account for mental illness. “I was asked if I could walk 200 metres unaided. No, I don’t need a stick or an aid, but I do need my husband or someone with me. Can I talk to people face to face? I talk to my family when they visit, but can I speak to strangers? No.”

She has had panic attacks as a consequence of losing her benefits, she says, and her family is now struggling financially. They have had to visit food banks twice since being rejected for PIP, but Clarke’s pride has stopped her from going more frequently. “I just find it so degrading. I don’t feel as if I should be there. I feel that, if I just had what I deserve, then I wouldn’t need to be in that place; I wouldn’t need to take food from, say, homeless people.”

Clarke’s marriage and her relationship with her children are suffering. “I’m useless to them, I’m not half the mum that I could be. I haven’t got enough funds. The government has no idea what these types of assessments do to people with mental health [issues]; how much it takes to walk into that room and talk about something so personal and then be told you aren’t ill enough.”

The evidence is mounting that people with mental health problems in particular are being failed by PIPs, with claimants reporting that the new system takes no account of the needs of people with conditions ranging from schizophrenia to severe depression. Figures released by the DWP in October showed that complaints about the PIP assessment process increased by 880% last year. The number of complaints that were upheld rose similarly dramatically, by 713%.

The DLA was first introduced in 1992 by John Major’s Conservative government and was paid to eligible claimants who had personal care or mobility needs as a consequence of a physical or mental disability. PIPs were introduced by the coalition government as part of the 2012 Welfare Reform Act, and have been steadily replacing the DLA since 8 April 2013. Some claimants who received indefinite DLA awards were not being reassessed, and the government then argued that it was necessary to have a system that frequently assessed people in order to determine if their needs had changed over time. In 2013, the then work and pensions secretary Iain Duncan Smith told the Daily Mail that “70% of people on it [DLA] have lifetime awards, which means no one sees you ever again. It doesn’t matter if you get better or your condition worsens – it’s quite ridiculous.”


The assessor’s concerns were about what the reflection would be on her if I did go out of the door and kill myself

The big differences between PIP and DLA claims arise from the assessment criteria. DLA is based on an individual’s condition and the needs arising from this, while entitlement to PIP is assessed using a points-based system. Claimants are typically invited to a face-to-face assessment in a private consultation room, but are sometimes assessed in their homes. People score points according to their ability to complete a number of everyday activities, such as washing and cooking, and whether they need aids and appliances or help from another person to do so. According to Full Fact, an independent factchecking charity, between October 2013 and October 2016, 22% of DLA claimants with mental health conditions had their benefits reduced when they were reassessed for PIP, and a further 25% lost them altogether.

Many of the people I speak to say the PIP assessments do not take into account the effect their mental health conditions have on their lives. Some say that, even though they are physically capable of preparing a meal, driving a car, or dressing and washing themselves, the ability to do these things changes all the time. This is especially the case with conditions such as clinical depression or bipolar disorder, when, on some days, a person may find it difficult to get out of bed.

Daniel O’Connor, 64, from Glasgow, has led a tough life. He has severe depression and adjustment disorder, and has twice attempted to end his life. O’Connor had been receiving DLA for nearly 22 years when, this year, his application for a PIP was rejected. Since then, he has experienced financial hardship and says his condition has worsened. O’Connor says he felt as if he wasn’t being listened to at his PIP assessment and recalls telling the assessor that on some days he struggles to get out of bed because his depression is so debilitating. However, his assessor dismissed his story, citing the fact that he could drive as evidence of his ability to carry out everyday tasks. “We got to discussing a previous suicide attempt I had [made],” he says. In the final moments of the interview, the assessor asked him seven times if he was going to go out of the door, there and then, and kill himself. O’Connor adds he found himself in the position of having to placate the assessor. “It seems to me that her concerns were not about me; her concerns were about what the reflection would be on her if I did go out of the door and kill myself.”

Rejected PIP applicants have the right to appeal the decisions made by the DWP, and statistics from the Ministry of Justice show that 65% of appeals are ruled in favour of the claimant. Campaigners say this demonstrates a systemic ineptitude in the way the assessment criteria are being interpreted.

Alison Smith with her husband, Mark, at home in Beverley.


Alison Smith with her husband, Mark, at home in Beverley. Photograph: Darren O’Brien/Guzelian

Alison Smith, 55, from Beverley in Yorkshire, cares for her husband, Mark, who has bipolar disorder. Mark “is unable to go out without someone with him or socialise”, she says. He can go for days without washing, dressing or eating. He will neglect his medication if not reminded and has self-harmed. The couple have lost other benefits, including their housing benefit, since losing PIP and they have been relying on a lump sum from Alison’s pension to get by.

Alison had a difficult time at her husband’s appointment. “The woman who did the assessment was horrible. She wouldn’t let Mark speak. When he tried to say anything, she kept saying: ‘No, I’m not interested in that – I need to go through what’s on this computer.’ They don’t look at the mental illness side of things. Mark has the [physical] ability to make a sandwich, but he doesn’t have the mental ability to do it.”

“Often, we hear from people with mental health problems who tell us that they dread the face-to-face assessments,” says Paul Spencer, policy and campaigns manager at the mental health charity Mind. Spencer adds that, as well as reforms to the Work Capability Assessment, used to determine one’s eligibility for Employment Support Allowance (ESA), “we also urgently need the government to overhaul the PIP assessment process to make sure it is fit for purpose – and delivered by people who really understand how someone’s mental health problem can affect their daily life”.

Lorna Crofta’s story illustrates this lack of understanding. Crofta, 53, from Worcester, has had severe mental health problems since childhood. She was awarded DLA for three years and then invited to apply for PIP this year. Her application was refused because she failed to attend her assessment – she had received a diagnosis of bowel cancer and the assessment was scheduled just before an operation to have a tumour removed. “I had come to a complete standstill physically, and that had an additional impact on my mental health. I hadn’t even opened my post for weeks and had gone beyond thinking in a rational manner about anything. I would not have been able to handle someone being in my house.” Crofta says she has been living in poverty all her life. Even before losing her DLA, she says, the benefit wasn’t allowing her to do much apart from securing basic subsistence. “My life is just existing between one appointment and the next. I have lost hope. I dread how much worse things will be if my appeal is turned down.”

Lorna Crofta in Worcester.


Lorna Crofta in Worcester. Photograph: David Sillitoe for the Guardian

The shadow work and pensions secretary, Debbie Abrahams, has seen first-hand some of the hardships disabled people are facing as a result of the government’s welfare reforms. “The number of cases I get, not just in my constituency but right across the country, is shameful – and shameful on the country as a whole,” she says, from her constituency office in Oldham. The system, she argues, is designed to put people off and to stop them claiming, “and, unfortunately, it’s working”. Abrahams adds that the assessors need to be held to account: “The fact that two-thirds of assessments are overturned on appeal just shows the fact that it is a warped system.”

The DWP responds: “PIP looks specifically at how someone’s life is affected by mental health, unlike the old system, which did not sufficiently recognise mental health problems.” They add that there are now more people with a mental health condition receiving the higher rates of PIP than their DLA equivalents. “PIP ensures that mental health conditions are given the same recognition as physical ones. It does this by considering how impairments affect a person’s life, rather than labelling individuals on the basis of a condition.”


My life is just existing between one appointment and the next

In February, the DWP was advised by judges at the Tribunals Service (the branch of the Ministry of Justice that oversees tribunals and adjudications) to award more points on the mobility assessment of the claim if people suffer from “overwhelming psychological distress”. However, because of concerns that these changes would cost an extra £3.7bn by 2022, the government enacted legislation reversing the judgment: it altered the mobility criteria to exclude people who had psychological distress – specifically, psychological distress caused by following the route of a familiar or unfamiliar journey when travelling alone. The move will mean that 292,500 claimants will no longer be entitled to any mobility component, which could affect people with a wide range of conditions including learning disabilities, autism, schizophrenia, anxiety conditions, social phobias and early-stage dementia. The government argued that the judgment had “interpreted the assessment criteria for PIP in ways that are different to what was originally intended”.

In April, Valerie Grant, 73, killed herself after her severely autistic son was told he did not qualify for disability benefits. Her death came after a UN report, published in November 2016, concluded that the UK government has failed to uphold the rights of disabled people, a verdict the UN reached again this August. Areas of concern highlighted in the UN’s report are high levels of poverty for disabled people and their families and reduced standards of living as a result of multiple welfare reforms and benefit cuts. One of the welfare reforms highlighted for criticism is the criteria used to assess people for PIPs.

In response to the UN’s findings, the DWP said: “We’re disappointed that this report does not accurately reflect the evidence we gave to the UN, and fails to recognise all the progress we’ve made to empower disabled people in all aspects of their lives.” It added that the government spends over £50bn a year to support disabled people and those with health problems and that “it is encouraging that almost 600,000 disabled people have moved into work in the UK over the last four years”.

Abrahams says that Labour, if elected to government, would aim to scrap both the Work Capability Assessment, the ESA and the PIP assessment, and devise a system that doesn’t look for ways to stop someone’s support. She says: “First of all, we should recognise and value what our social security system is for, and I make it absolutely clear it should be like the NHS. It is there for everyone in their time of need and we should value it.” In the meantime, disabled people will have to continue to battle the DWP for access to benefits.

O’Connor says he has experienced financial hardship since losing his benefit, but that has been mitigated by the fact that he is approaching state pension age, and the fact that he receives money from private pensions. “I’m very lucky that I’m in a situation where I will not be made homeless, but, even if I was, I still wouldn’t give up. They could sanction me to death, but I will not be doing their job for them; I will not be killing myself.”

In the UK, the Samaritans can be contacted on 116 123. In the US, the National Suicide Prevention Lifeline is 1-800-273-8255. In Australia, the crisis support service Lifeline is 13 11 14. Other international suicide helplines can be found at www.befrienders.org.

‘I have lost hope’: the people with mental health problems who are being stripped of their benefits

Kloey Clarke, 28, from Devizes in Wiltshire, has had severe anxiety and type II bipolar disorder for six years. “I’m scared to leave the house,” says Clarke, who does not feel emotionally or physically stable enough to hold down a job and relies on her husband for care and support. “I have a constant fear of dying. I can’t socialise and I can’t communicate outside [the house].” For four years, Clarke depended on a Disability Living Allowance (DLA). The DLA was replaced by Personal Independence Payments (PIPs) in 2012 – and phased in from 2013 – but she was receiving them for less than a year before she was reassessed by the Department for Work and Pensions (DWP) and told she no longer qualified.

Clarke believes that the assessment for PIP is aimed at people with physical disabilities and does not account for mental illness. “I was asked if I could walk 200 metres unaided. No, I don’t need a stick or an aid, but I do need my husband or someone with me. Can I talk to people face to face? I talk to my family when they visit, but can I speak to strangers? No.”

She has had panic attacks as a consequence of losing her benefits, she says, and her family is now struggling financially. They have had to visit food banks twice since being rejected for PIP, but Clarke’s pride has stopped her from going more frequently. “I just find it so degrading. I don’t feel as if I should be there. I feel that, if I just had what I deserve, then I wouldn’t need to be in that place; I wouldn’t need to take food from, say, homeless people.”

Clarke’s marriage and her relationship with her children are suffering. “I’m useless to them, I’m not half the mum that I could be. I haven’t got enough funds. The government has no idea what these types of assessments do to people with mental health [issues]; how much it takes to walk into that room and talk about something so personal and then be told you aren’t ill enough.”

The evidence is mounting that people with mental health problems in particular are being failed by PIPs, with claimants reporting that the new system takes no account of the needs of people with conditions ranging from schizophrenia to severe depression. Figures released by the DWP in October showed that complaints about the PIP assessment process increased by 880% last year. The number of complaints that were upheld rose similarly dramatically, by 713%.

The DLA was first introduced in 1992 by John Major’s Conservative government and was paid to eligible claimants who had personal care or mobility needs as a consequence of a physical or mental disability. PIPs were introduced by the coalition government as part of the 2012 Welfare Reform Act, and have been steadily replacing the DLA since 8 April 2013. Some claimants who received indefinite DLA awards were not being reassessed, and the government then argued that it was necessary to have a system that frequently assessed people in order to determine if their needs had changed over time. In 2013, the then work and pensions secretary Iain Duncan Smith told the Daily Mail that “70% of people on it [DLA] have lifetime awards, which means no one sees you ever again. It doesn’t matter if you get better or your condition worsens – it’s quite ridiculous.”


The assessor’s concerns were about what the reflection would be on her if I did go out of the door and kill myself

The big differences between PIP and DLA claims arise from the assessment criteria. DLA is based on an individual’s condition and the needs arising from this, while entitlement to PIP is assessed using a points-based system. Claimants are typically invited to a face-to-face assessment in a private consultation room, but are sometimes assessed in their homes. People score points according to their ability to complete a number of everyday activities, such as washing and cooking, and whether they need aids and appliances or help from another person to do so. According to Full Fact, an independent factchecking charity, between October 2013 and October 2016, 22% of DLA claimants with mental health conditions had their benefits reduced when they were reassessed for PIP, and a further 25% lost them altogether.

Many of the people I speak to say the PIP assessments do not take into account the effect their mental health conditions have on their lives. Some say that, even though they are physically capable of preparing a meal, driving a car, or dressing and washing themselves, the ability to do these things changes all the time. This is especially the case with conditions such as clinical depression or bipolar disorder, when, on some days, a person may find it difficult to get out of bed.

Daniel O’Connor, 64, from Glasgow, has led a tough life. He has severe depression and adjustment disorder, and has twice attempted to end his life. O’Connor had been receiving DLA for nearly 22 years when, this year, his application for a PIP was rejected. Since then, he has experienced financial hardship and says his condition has worsened. O’Connor says he felt as if he wasn’t being listened to at his PIP assessment and recalls telling the assessor that on some days he struggles to get out of bed because his depression is so debilitating. However, his assessor dismissed his story, citing the fact that he could drive as evidence of his ability to carry out everyday tasks. “We got to discussing a previous suicide attempt I had [made],” he says. In the final moments of the interview, the assessor asked him seven times if he was going to go out of the door, there and then, and kill himself. O’Connor adds he found himself in the position of having to placate the assessor. “It seems to me that her concerns were not about me; her concerns were about what the reflection would be on her if I did go out of the door and kill myself.”

Rejected PIP applicants have the right to appeal the decisions made by the DWP, and statistics from the Ministry of Justice show that 65% of appeals are ruled in favour of the claimant. Campaigners say this demonstrates a systemic ineptitude in the way the assessment criteria are being interpreted.

Alison Smith with her husband, Mark, at home in Beverley.


Alison Smith with her husband, Mark, at home in Beverley. Photograph: Darren O’Brien/Guzelian

Alison Smith, 55, from Beverley in Yorkshire, cares for her husband, Mark, who has bipolar disorder. Mark “is unable to go out without someone with him or socialise”, she says. He can go for days without washing, dressing or eating. He will neglect his medication if not reminded and has self-harmed. The couple have lost other benefits, including their housing benefit, since losing PIP and they have been relying on a lump sum from Alison’s pension to get by.

Alison had a difficult time at her husband’s appointment. “The woman who did the assessment was horrible. She wouldn’t let Mark speak. When he tried to say anything, she kept saying: ‘No, I’m not interested in that – I need to go through what’s on this computer.’ They don’t look at the mental illness side of things. Mark has the [physical] ability to make a sandwich, but he doesn’t have the mental ability to do it.”

“Often, we hear from people with mental health problems who tell us that they dread the face-to-face assessments,” says Paul Spencer, policy and campaigns manager at the mental health charity Mind. Spencer adds that, as well as reforms to the Work Capability Assessment, used to determine one’s eligibility for Employment Support Allowance (ESA), “we also urgently need the government to overhaul the PIP assessment process to make sure it is fit for purpose – and delivered by people who really understand how someone’s mental health problem can affect their daily life”.

Lorna Crofta’s story illustrates this lack of understanding. Crofta, 53, from Worcester, has had severe mental health problems since childhood. She was awarded DLA for three years and then invited to apply for PIP this year. Her application was refused because she failed to attend her assessment – she had received a diagnosis of bowel cancer and the assessment was scheduled just before an operation to have a tumour removed. “I had come to a complete standstill physically, and that had an additional impact on my mental health. I hadn’t even opened my post for weeks and had gone beyond thinking in a rational manner about anything. I would not have been able to handle someone being in my house.” Crofta says she has been living in poverty all her life. Even before losing her DLA, she says, the benefit wasn’t allowing her to do much apart from securing basic subsistence. “My life is just existing between one appointment and the next. I have lost hope. I dread how much worse things will be if my appeal is turned down.”

Lorna Crofta in Worcester.


Lorna Crofta in Worcester. Photograph: David Sillitoe for the Guardian

The shadow work and pensions secretary, Debbie Abrahams, has seen first-hand some of the hardships disabled people are facing as a result of the government’s welfare reforms. “The number of cases I get, not just in my constituency but right across the country, is shameful – and shameful on the country as a whole,” she says, from her constituency office in Oldham. The system, she argues, is designed to put people off and to stop them claiming, “and, unfortunately, it’s working”. Abrahams adds that the assessors need to be held to account: “The fact that two-thirds of assessments are overturned on appeal just shows the fact that it is a warped system.”

The DWP responds: “PIP looks specifically at how someone’s life is affected by mental health, unlike the old system, which did not sufficiently recognise mental health problems.” They add that there are now more people with a mental health condition receiving the higher rates of PIP than their DLA equivalents. “PIP ensures that mental health conditions are given the same recognition as physical ones. It does this by considering how impairments affect a person’s life, rather than labelling individuals on the basis of a condition.”


My life is just existing between one appointment and the next

In February, the DWP was advised by judges at the Tribunals Service (the branch of the Ministry of Justice that oversees tribunals and adjudications) to award more points on the mobility assessment of the claim if people suffer from “overwhelming psychological distress”. However, because of concerns that these changes would cost an extra £3.7bn by 2022, the government enacted legislation reversing the judgment: it altered the mobility criteria to exclude people who had psychological distress – specifically, psychological distress caused by following the route of a familiar or unfamiliar journey when travelling alone. The move will mean that 292,500 claimants will no longer be entitled to any mobility component, which could affect people with a wide range of conditions including learning disabilities, autism, schizophrenia, anxiety conditions, social phobias and early-stage dementia. The government argued that the judgment had “interpreted the assessment criteria for PIP in ways that are different to what was originally intended”.

In April, Valerie Grant, 73, killed herself after her severely autistic son was told he did not qualify for disability benefits. Her death came after a UN report, published in November 2016, concluded that the UK government has failed to uphold the rights of disabled people, a verdict the UN reached again this August. Areas of concern highlighted in the UN’s report are high levels of poverty for disabled people and their families and reduced standards of living as a result of multiple welfare reforms and benefit cuts. One of the welfare reforms highlighted for criticism is the criteria used to assess people for PIPs.

In response to the UN’s findings, the DWP said: “We’re disappointed that this report does not accurately reflect the evidence we gave to the UN, and fails to recognise all the progress we’ve made to empower disabled people in all aspects of their lives.” It added that the government spends over £50bn a year to support disabled people and those with health problems and that “it is encouraging that almost 600,000 disabled people have moved into work in the UK over the last four years”.

Abrahams says that Labour, if elected to government, would aim to scrap both the Work Capability Assessment, the ESA and the PIP assessment, and devise a system that doesn’t look for ways to stop someone’s support. She says: “First of all, we should recognise and value what our social security system is for, and I make it absolutely clear it should be like the NHS. It is there for everyone in their time of need and we should value it.” In the meantime, disabled people will have to continue to battle the DWP for access to benefits.

O’Connor says he has experienced financial hardship since losing his benefit, but that has been mitigated by the fact that he is approaching state pension age, and the fact that he receives money from private pensions. “I’m very lucky that I’m in a situation where I will not be made homeless, but, even if I was, I still wouldn’t give up. They could sanction me to death, but I will not be doing their job for them; I will not be killing myself.”

In the UK, the Samaritans can be contacted on 116 123. In the US, the National Suicide Prevention Lifeline is 1-800-273-8255. In Australia, the crisis support service Lifeline is 13 11 14. Other international suicide helplines can be found at www.befrienders.org.

Residents of blocks next to Grenfell Tower fear being forced to move back

Residents of three blocks next to Grenfell Tower who are living in temporary accommodation fear that they will be forced to return when the estate is refurbished even though many have traumatic memories of the deadly fire.

There is concern among the 161 households from the so-called walkway blocks that new council rehousing guidelines mean they will face a series of restrictions and less secure tenancy terms if they move elsewhere.

Community leaders have accused Kensington and Chelsea council of breaking promises to residents of the Grenfell Tower estate as a result.

A spokesman from North Kensington Law Centre, which has worked closely with many Grenfell families, said they were “deeply concerned about the policy in its current form”.

He said: “Walkways residents will be faced with a difficult choice as to whether they forgo their housing security and some vital tenancy rights or face the trauma of having to return to the estate in the shadow of Grenfell.

“This policy runs the serious risk of failing to address residents’ needs, pressurising them into returning to the estate, potentially at the cost of their wellbeing and that of their children.”

Those who lived in the main tower, where at least 80 people died, and another badly-damaged block, Grenfell Walk, were told soon after the blaze that there would be no restrictions on their opportunities to choose a new council home.

However, people in the three walkway blocks adjoining the main tower – Barandon Walk, Hurstway Walk and Testerton Walk – have had to wait more than four months for news of their options.

A draft rehousing plan for the walkways, published before a council committee meeting on Monday night, says those wishing to move will only be given two chances to accept offers of new homes. If they refuse both, they will lose any priority.

It stipulates that walkway residents will be given a maximum of 900 “points” for the council’s housing list, not enough to automatically place them at the top for other homes. Tenant rehoused by a housing association or another council will not necessarily keep the same security of tenure, thus potentially losing a lifetime lease.

Jennifer Nadel, who stood for the Green party in Kensington in the June election and has worked as a volunteer supporting Grenfell survivors, said it was “utterly inhumane” to penalise the residents.

She said: “It puts tenants in the position of having to choose between their mental and emotional health and their housing rights. Yet again, the council has failed to respond with humanity to this tragedy.”

John Healey, the shadow housing minister, said: “Ministers promised they would do everything they can to support the victims of the Grenfell Tower fire. That must include making sure that any residents affected by the fire do not lose out as a result of being rehoused.”

One community leader who has worked with many walkway families said the policy of giving residents just two choices of new homes seemed especially onerous: “Who’s going to monitor if they’ve been given appropriate choices? What if they’re offered a flat on a high floor of a tower block?”

One resident, who asked not to be named, said it was hard to overstate the emotional impact of returning to the estate: “Out of one window you have the investigations team and on the other side you have the tower. And then there’s the emotional impact of the night.”

The resident said the rehousing policy failed to address the needs of locals who might wish to eventually return home, but only once the fire-ravaged tower was covered up or removed.

“For me, the biggest problem is that it pressures people to move back and stipulates what happens if you move away. What it doesn’t say properly is what happens to people who want to move back but not yet.”

Kim Taylor-Smith, the Kensington and Chelsea councillor who leads on housing, said the council would be consulting residents: “It is going through a thorough serious consultation – starting with scrutiny from the public this very evening … [the council] understands that many of these people will also be severely traumatised by what they saw that night”.

“We believe that we have put forward a fair way to help people out of hotels and either back into their own homes, into temporary accommodation, or into a home in a different location.”

‘Some see crying in front of patients as unprofessional. Most see it as being human’

Working in healthcare can be emotionally fraught. Not only are staff working under increasing pressure but they are faced with humanity at its most vulnerable. They encounter death and witness in a week more than what most people might see over a lifetime.

Compassion is also a key part of any role in healthcare. It’s only natural that staff should need an emotional release under such circumstances. But is crying in front of patients a good idea? Does it detract from their grief or does it help professionals seem more human? Six healthcare professionals share their experiences.

‘I don’t think it helps to cry in front of patients in certain situations’

I was working a long, 14-hour shift in a busy London hospital just before Christmas. I had been looking after a man with heart failure and we were running out of options. The man and his son were well aware of the gravity of the situation. I asked my registrar to re-review when the man started to lose consciousness. When I asked desperately what our next treatment strategy would be, he looked at me carefully, then looked down and said nothing. The realisation washed over me that we couldn’t save him; the man was going to die, and his family would not see him at Christmas. I lost control of my emotions momentarily; [my colleague] put a hand on my shoulder, then asked me to get a cup of tea and sit down, and come back when I was ready. The man passed away that evening.

It’s OK to show emotion – positive or negative – and it becomes easier with experience. However, I don’t think it helps to cry in front of patients in certain situations. The emotion of the moment shouldn’t be about the doctor – it’s about the patient and their family. Their grief is what matters most. You also need to keep your emotions under control to make the best decisions for the patient. Ben White, registrar in gastroenterology and general internal medicine

‘Once the feelings fade, so does the passion’

Crying in front of patients is part and parcel of nursing. Whether it’s bad news, stress or confrontation, crying has and will always happen. Some see it as unprofessional; most see it as being human. After five years, including a four-year stint in A&E, I still cry after every death I witness. One day I saw this as weakness and said to the doctor I was with, “I can’t believe I still cry every time!” I was embarrassed by my tears. He turned and said: “The day you don’t cry is when you should stop nursing.” Those words hit home. Now when the tears come I’m not ashamed because once the feelings fade, so does the passion. Donna Thomas, spinal surgery ward

‘The tears I’ve seen from paramedics are more likely borne from burnout’

I’ve never seen a paramedic crying in front of a patient. The tears I’ve seen and have experienced are more likely borne from the seething soup of frustration, burnout, bullying, fatigue and the chronic, ulcerating ache of rock-bottom morale. I’ve heard more examples of people crying into a mirror as they don their uniform before leaving for work – sobbing to their reflection, trying to convince themselves that they must push through another shift of utter shit.

I know public perception will favour the image of a weeping paramedic being comforted by her crewmate after failing to resuscitate a young child, and this narrative probably dovetails with the belief that paramedics regularly attend genuine emergencies – but both versions of our story are far from reality.


The emotion of the moment ​​shouldn’t be about the doctor – it’s about the patient ​and their family

Ben White

Although a crying paramedic would be unreservedly comforted by their colleagues, once out of sight and earshot, eyebrows would be raised, shoulders would be shrugged and their mental resilience would be questioned. Crying would probably be considered a sign of weakness.

During my nine years of frontline experience, sometimes I did feel like crying, but I would usually stamp on whatever the trigger was. Robin Ibbott, former paramedic, now a locum

‘Loss of professional composure helps nobody’

There would be nothing worse than someone feeling that they were the subject of the saying, “laugh and the world laughs with you, weep and you weep alone”. However, “weep with” feels different from “weep in front of”. A sense of shared sorrow might be comforting; loss of professional composure helps nobody. The answer might be different for patients and for relatives – and remember that the sorrow and loss will be much more enduring for any who are bereaved than it is for those who provided professional care. Paul Gray, chief executive, NHS Scotland

‘It’s difficult to say when crying is OK and when it’s not’

I was sitting across from the mother of a child who was terminally ill. We were talking about planning for the end of her life. I’d known this family for a number of years and no one was ready to lose her.

As her mother showed me photos of her child smiling – something we thought she might never do with her complex and life-limiting condition – she cried and I cried with her. I was there to comfort and support her, not the other way round. But this felt right. It was an acknowledgement of how much this child and her family meant to me and how much I cared.

I’ve only ever cried with patients and families when they have been crying too. It feels right when my feelings and responses are mirroring theirs, when we’re sharing the same emotions. There’s solidarity in that. For me, as a nurse, it would feel wrong to be more upset than the family. It’s their moment, not mine. It wouldn’t be right if they felt the need to comfort me or if I was visibly distressed and they weren’t. At those times I go to colleagues for support.

It’s difficult to say exactly when crying is OK and when it’s not. So much of this is about gut feeling and going with what feels natural and right in the moment. Becky Platt, matron for children’s services

‘I heard one story that made me sob. I felt so unprofessional’

I have always cried too easily. When I was pregnant this became ridiculous – I cried when the man in the red shirt on Star Trek died and if anyone criticised me. I would well up when patients told me a sad story, but at eight months pregnant one lady told me such a harrowing story of motherhood that made me well up, weep and then sob. She cried too and we sat with tissues between us long after the appointment should have finished. I felt so unprofessional and didn’t want anyone else to see. I blamed my red eyes on pregnancy allergies and told no one the truth for a long time. I left soon after on maternity leave, but when I returned I said hello to her in the waiting room. She had an appointment with another doctor that day but asked if she could come back for her next appointment to my list. She said that I understood what she had been through. Hilary Kinsler, consultant psychiatrist

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‘Home first’ model aims to stop patients being stranded on hospital wards

With winter looming, health and care teams are being urged to radically overhaul discharge procedures to prevent patients being left stranded on hospital wards. New approaches are yielding striking results that could help avert a beds crisis – and improve older people’s chances of continuing to live independently.

The latest thinking on hospital discharge is to get people home and then carry out assessment of their support needs and rehabilitation. Hospital trusts and their community health and social care partners are being encouraged to adopt a “discharge-to-assess” (D2A) or “home-first” model.

Where the models have been tested, the number of patients subject to delayed discharge has plummeted; the number of patients going into residential care has also shrunk dramatically – in one instance, almost to nothing.

“We can see that the impact of D2A is huge,” says Liz Sargeant, clinical lead for the national emergency care improvement programme. “Ten days in bed for patients over 80 is equivalent to 10 years’ ageing of muscles.”

This deconditioning means that some people go into hospital never to see their own home again. “Yet people can instead be discharged, then supported in their own homes,” says Sargeant.

Images of people waiting for trolleys in A&E and reports of routine operations being cancelled dominate the news every winter, as demand for hospital beds spikes. Nearly two thirds of hospital inpatients at any one time are 65 or older, according to the National Audit Office, while delays in discharge, or “transfers of care”, are almost a third up on 2014. That’s equivalent to almost 6,000 beds a day being taken up unnecessarily, with 55% of delays attributed to the NHS – principally “patients awaiting further non-acute NHS care” – and 37% attributed to social care, principally patients awaiting a care package for when they return home.

Measures announced in July aimed at prompting councils to cut delays on the social care side have proved controversial. Critics have questioned the rationale of threatening to cut funding for councils that fail to respond. But part of the drive to free up as many as 3,000 extra beds is based on an expectation by NHS Improvement (NHSI), the agency that works with care providers, that hospitals will adopt the D2A model as good practice and have just one person carry out needs assessments.

The agency points to results in east London, where Tower Hamlets Together, a collaboration of health and social care organisations, has piloted D2A. The average length of hospital stay is down and there has been a dramatic fall in the number of patients ending up needing long-term care, says Patricia Oguta, interim team manager for hospital social services.

When the pilot was run in 2015-16, just 1% of patients who were discharged under the new arrangements, then assessed at home for care packages, reablement and therapy, ended up in residential or nursing care – compared with an estimated 50% of patients who had conventional in-patient rehabilitation.

The approach is now a formal “care pathway” within the admission avoidance and discharge service operated by the East London NHS foundation trust. Running seven days a week from 8am to 6pm, it is staffed by two social workers, four occupational therapists (OTs), two physiotherapists, three nurses and one rehabilation support worker. Patients are given an assessment on the day of referral, if required, and receive up to six weeks’ community input post-discharge. Short-term night care is also possible. The full social care assessment process starts two weeks after discharge, to fully address the change in needs.

“Tower Hamlets’ success has been down to partnership working and a whole-system approach, with a big emphasis on supporting people in their homes,” says Oguta. “As a result there are fewer people going into residential care and we have been able to close one of the rehabilitation wards for the elderly.”

Another success story is in Kent, where Medway foundation NHS trust has shown what can be achieved with the right mindset. The trust came out of a record four years in special measures in April after overhauling its discharge arrangements. Working in partnership with Medway clinical commissioning group (CCG), Medway council and Medway Community Healthcare, a community interest company, the trust developed the Home First initiative – to provide support for patients who are medically fit to be discharged, but still require additional home support.

Again, results have been astonishing – a 25% drop in the number of delayed transfers of care in three months of the pilot last year, with an average of 32 patients discharged by the Medway Maritime each week. That number has since increased to 40, and a total of 2,000 patients have been discharged under the seven-days-a-week scheme, which has four patient pathways, for those needing little or no support through to those with complex needs who may need intermediate care and may not be able to go home safely immediately. Data shows permanent admissions to care homes for over-65s have halved since introduction of the scheme.

Barbara Littlewood, 87, from Allhallows, near Rochester in Kent, is a fervent advocate of Home First. She was supported to return to her bungalow last winter, following surgery on her knee, and spent just five days in hospital, compared to three weeks for a similar operation in the past.

“I can never sleep in hospital so I was relieved to get home,” says Littlewood. “I had carers in three times a day and an OT came to oversee my exercises. Everyone made sure I had all I needed to get around my home safely and independently.”

Lisa Riley, former Home First lead for Medway Community Healthcare, who now works with NHSI, recalls that Medway’s D2A scheme was implemented in April last year just a few weeks before a visit by inspectors from the Care Quality Commission. It used existing teams and directed all care via that route – removing historical “territories” and creating a single point of access for all coordination of a patient’s discharge. Under the new system, transport is arranged for patients, who are assessed in their own homes by an OT within two hours of leaving hospital. The care package may also involve telecare and wraparound care, with people ringing to make sure medication is taken.

Riley, who has spoken to 30 other health and social care organisations about the Medway approach, admits that one model won’t suit every situation. However, she believes the key is to make it as simple as possible and ensure that someone has leadership of the overall project, as well as giving control to staff.

There is no doubt that the Medway model has involved a huge culture change. Borne out of necessity, with the trust needing to improve on its special measures rating, Home First was implemented throughout the Medway Maritime hospital. The success of the scheme shows how it is possible to make change within current systems. By placing a greater emphasis on an individual patient’s needs, rather than on organisational boundaries, and by making imaginative use of money, resources and skills across established silos, the Medway did enough to elevate itself out of special measures.

Sarah Mitchell, a former director with the Local Government Association, who is now strategic adviser for social care for NHSI’s emergency care improvement programme, agrees that cultural change is essential. But she stresses that money needs to be put into community health services to support the change. “There is a focus on front-door services, but the availability of district nurses and assistant nurses reduces pressure,” says Mitchell. “If you want the community to do this, you have to invest in this.”

The case for pushing people, within their capabilities, to do more for themselves, so that they avoid becoming dependent is “overwhelming”, says Sargeant. “We ask people to make cups of tea in hospital occcupational therapy kitchens and walk upstairs, even if they live in a bungalow or on one level of their house,” she says. “We ask them intimate questions about how they manage their personal care and then decide whether they have passed or failed these tests. For people with dementia, this is even more challenging.

We would not keep children in hospital unnecessarily, she adds, so why do so with older people? “We need a cultural change; we need to develop a home-first mindset. It is happening in some places, but there is slow progress in others. It needs to happen everywhere.”

‘They are talking about a walk-in shower’

Marlene Decozar was celebrating her 80th birthday surrounded by her close family at her home in east London earlier this year. Days later she was on a hospital ward because of a spinal fracture brought on by thinning of the bones.

Confused and in extreme agony, she had been taken by ambulance to the Royal London hospital. Yet within a week, she was back at her one-bedroom home in Poplar with the support of the Tower Hamlets reablement team.

Older woman at home


Happy to be home – Marlene Decozar. Photograph: Lisa Warren for the Guardian

“In hospital they got my pain under control,” Decozar says. “They then sent different services to see me and follow up back at home. I still have to have help getting in and out of the shower as I can’t bend.

“The occupational therapist comes once a week and they are even talking about getting me a walk-in shower, which will be brilliant,” she adds.

For daughter Lisa Warren, who lives in nearby Hackney, the care has been an eye-opener. She says: “I thought my mum would be stuck in hospital for weeks.

“The reablement team has been supporting her to be independent. They are talking about fitting a wet room and they have given her a tray on wheels, so she can make herself cups of tea etc. I was worried that she would get six weeks of care and that would be it. But the support has been ongoing. Carers come in and the team has extended the help for her while they sort out a care package. We were worried about how she would cope, but she is just really happy to be back home with her dog, Toffee.”

Join the Social Care Network for comment, analysis and job opportunities, direct to your inbox. Follow us on Twitter (@GdnSocialCare) and like us on Facebook. If you have an idea for a blog, read our guidelines and email your pitch to us at socialcare@theguardian.com.

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‘Home first’ model aims to stop patients being stranded on hospital wards

With winter looming, health and care teams are being urged to radically overhaul discharge procedures to prevent patients being left stranded on hospital wards. New approaches are yielding striking results that could help avert a beds crisis – and improve older people’s chances of continuing to live independently.

The latest thinking on hospital discharge is to get people home and then carry out assessment of their support needs and rehabilitation. Hospital trusts and their community health and social care partners are being encouraged to adopt a “discharge-to-assess” (D2A) or “home-first” model.

Where the models have been tested, the number of patients subject to delayed discharge has plummeted; the number of patients going into residential care has also shrunk dramatically – in one instance, almost to nothing.

“We can see that the impact of D2A is huge,” says Liz Sargeant, clinical lead for the national emergency care improvement programme. “Ten days in bed for patients over 80 is equivalent to 10 years’ ageing of muscles.”

This deconditioning means that some people go into hospital never to see their own home again. “Yet people can instead be discharged, then supported in their own homes,” says Sargeant.

Images of people waiting for trolleys in A&E and reports of routine operations being cancelled dominate the news every winter, as demand for hospital beds spikes. Nearly two thirds of hospital inpatients at any one time are 65 or older, according to the National Audit Office, while delays in discharge, or “transfers of care”, are almost a third up on 2014. That’s equivalent to almost 6,000 beds a day being taken up unnecessarily, with 55% of delays attributed to the NHS – principally “patients awaiting further non-acute NHS care” – and 37% attributed to social care, principally patients awaiting a care package for when they return home.

Measures announced in July aimed at prompting councils to cut delays on the social care side have proved controversial. Critics have questioned the rationale of threatening to cut funding for councils that fail to respond. But part of the drive to free up as many as 3,000 extra beds is based on an expectation by NHS Improvement (NHSI), the agency that works with care providers, that hospitals will adopt the D2A model as good practice and have just one person carry out needs assessments.

The agency points to results in east London, where Tower Hamlets Together, a collaboration of health and social care organisations, has piloted D2A. The average length of hospital stay is down and there has been a dramatic fall in the number of patients ending up needing long-term care, says Patricia Oguta, interim team manager for hospital social services.

When the pilot was run in 2015-16, just 1% of patients who were discharged under the new arrangements, then assessed at home for care packages, reablement and therapy, ended up in residential or nursing care – compared with an estimated 50% of patients who had conventional in-patient rehabilitation.

The approach is now a formal “care pathway” within the admission avoidance and discharge service operated by the East London NHS foundation trust. Running seven days a week from 8am to 6pm, it is staffed by two social workers, four occupational therapists (OTs), two physiotherapists, three nurses and one rehabilation support worker. Patients are given an assessment on the day of referral, if required, and receive up to six weeks’ community input post-discharge. Short-term night care is also possible. The full social care assessment process starts two weeks after discharge, to fully address the change in needs.

“Tower Hamlets’ success has been down to partnership working and a whole-system approach, with a big emphasis on supporting people in their homes,” says Oguta. “As a result there are fewer people going into residential care and we have been able to close one of the rehabilitation wards for the elderly.”

Another success story is in Kent, where Medway foundation NHS trust has shown what can be achieved with the right mindset. The trust came out of a record four years in special measures in April after overhauling its discharge arrangements. Working in partnership with Medway clinical commissioning group (CCG), Medway council and Medway Community Healthcare, a community interest company, the trust developed the Home First initiative – to provide support for patients who are medically fit to be discharged, but still require additional home support.

Again, results have been astonishing – a 25% drop in the number of delayed transfers of care in three months of the pilot last year, with an average of 32 patients discharged by the Medway Maritime each week. That number has since increased to 40, and a total of 2,000 patients have been discharged under the seven-days-a-week scheme, which has four patient pathways, for those needing little or no support through to those with complex needs who may need intermediate care and may not be able to go home safely immediately. Data shows permanent admissions to care homes for over-65s have halved since introduction of the scheme.

Barbara Littlewood, 87, from Allhallows, near Rochester in Kent, is a fervent advocate of Home First. She was supported to return to her bungalow last winter, following surgery on her knee, and spent just five days in hospital, compared to three weeks for a similar operation in the past.

“I can never sleep in hospital so I was relieved to get home,” says Littlewood. “I had carers in three times a day and an OT came to oversee my exercises. Everyone made sure I had all I needed to get around my home safely and independently.”

Lisa Riley, former Home First lead for Medway Community Healthcare, who now works with NHSI, recalls that Medway’s D2A scheme was implemented in April last year just a few weeks before a visit by inspectors from the Care Quality Commission. It used existing teams and directed all care via that route – removing historical “territories” and creating a single point of access for all coordination of a patient’s discharge. Under the new system, transport is arranged for patients, who are assessed in their own homes by an OT within two hours of leaving hospital. The care package may also involve telecare and wraparound care, with people ringing to make sure medication is taken.

Riley, who has spoken to 30 other health and social care organisations about the Medway approach, admits that one model won’t suit every situation. However, she believes the key is to make it as simple as possible and ensure that someone has leadership of the overall project, as well as giving control to staff.

There is no doubt that the Medway model has involved a huge culture change. Borne out of necessity, with the trust needing to improve on its special measures rating, Home First was implemented throughout the Medway Maritime hospital. The success of the scheme shows how it is possible to make change within current systems. By placing a greater emphasis on an individual patient’s needs, rather than on organisational boundaries, and by making imaginative use of money, resources and skills across established silos, the Medway did enough to elevate itself out of special measures.

Sarah Mitchell, a former director with the Local Government Association, who is now strategic adviser for social care for NHSI’s emergency care improvement programme, agrees that cultural change is essential. But she stresses that money needs to be put into community health services to support the change. “There is a focus on front-door services, but the availability of district nurses and assistant nurses reduces pressure,” says Mitchell. “If you want the community to do this, you have to invest in this.”

The case for pushing people, within their capabilities, to do more for themselves, so that they avoid becoming dependent is “overwhelming”, says Sargeant. “We ask people to make cups of tea in hospital occcupational therapy kitchens and walk upstairs, even if they live in a bungalow or on one level of their house,” she says. “We ask them intimate questions about how they manage their personal care and then decide whether they have passed or failed these tests. For people with dementia, this is even more challenging.

We would not keep children in hospital unnecessarily, she adds, so why do so with older people? “We need a cultural change; we need to develop a home-first mindset. It is happening in some places, but there is slow progress in others. It needs to happen everywhere.”

‘They are talking about a walk-in shower’

Marlene Decozar was celebrating her 80th birthday surrounded by her close family at her home in east London earlier this year. Days later she was on a hospital ward because of a spinal fracture brought on by thinning of the bones.

Confused and in extreme agony, she had been taken by ambulance to the Royal London hospital. Yet within a week, she was back at her one-bedroom home in Poplar with the support of the Tower Hamlets reablement team.

Older woman at home


Happy to be home – Marlene Decozar. Photograph: Lisa Warren for the Guardian

“In hospital they got my pain under control,” Decozar says. “They then sent different services to see me and follow up back at home. I still have to have help getting in and out of the shower as I can’t bend.

“The occupational therapist comes once a week and they are even talking about getting me a walk-in shower, which will be brilliant,” she adds.

For daughter Lisa Warren, who lives in nearby Hackney, the care has been an eye-opener. She says: “I thought my mum would be stuck in hospital for weeks.

“The reablement team has been supporting her to be independent. They are talking about fitting a wet room and they have given her a tray on wheels, so she can make herself cups of tea etc. I was worried that she would get six weeks of care and that would be it. But the support has been ongoing. Carers come in and the team has extended the help for her while they sort out a care package. We were worried about how she would cope, but she is just really happy to be back home with her dog, Toffee.”

Join the Social Care Network for comment, analysis and job opportunities, direct to your inbox. Follow us on Twitter (@GdnSocialCare) and like us on Facebook. If you have an idea for a blog, read our guidelines and email your pitch to us at socialcare@theguardian.com.

If you’re looking for a social care job or need to recruit staff, visit Guardian Jobs.

Women in the greatest need are being let down by a lack of local support

Nobody ever turned up to a substance misuse clinic in need of support solely for substance misuse, says Pip Williams, who spent 26 years living with alcohol and drug dependency. At the same time, she grappled with mental health issues, an abusive relationship, homelessness and periods of losing her children to care.

“When you’re a woman with multiple issues you face a choice: we have to deal with what’s killing us first – is it substance misuse or is it domestic violence,” she explains. “Support for those things can only be accessed in silos; there needs to be a place where woman can get holistic help for it all – and before they reach crisis.”

Now in recovery, Williams has gone on to found a support network for pregnant women at risk of having children with foetal alcohol spectrum disorders. She has contributed to Mapping the Maze, a report by Against Violence and Abuse (AVA) and Agenda, the alliance for women and girls at risk. The report highlights the confusing and fragmented nature of provision in local authorities across England and Wales – with some areas having a range of services for women, and others having none at all.

Gathered through FOI requests, here are some of the report’s most troubling findings:

Women are bounced between services

Only 19 out of 173 local authority areas in England and Wales have services for women that address all the following issues: substance misuse, mental health, homelessness, offending and complex needs. Nine areashad no evidence of any of these services for women whatsoever.

The vast majority of services available across England and Wales address single issues – so women are bounced between services, having to repeat their stories multiple times and are often unable to get the help they need.

Support with substance misuse isn’t tailored to women

Women make up around a third of people accessing drug treatment services – with that figure increasing to nearly 40% for alcohol services, according to the National Drug Treatment Monitoring System.

But only just shy of half of all local authority areas in England have support services specifically for women experiencing substance misuse, according to the Mapping the Maze report. In Wales only 22.7% of authorities are home to localised support of this kind.

Substance misuse midwives accounted for more than a third of substance misuse services found, feeding into a wider finding that more than a quarter of all support for women facing multiple disadvantage is for pregnant women or those with a young baby.

Women are commonly invited to join a weekly women’s group, housed within a generic substance misuse service. The report argues that this tends to be an add-on rather than at the core of formal recovery programmes, with one woman interviewed for the report saying she felt these groups were “something to tick a box rather than something [organisations] are committed to”.

The report also notes that it is disappointing that only only ten of the 129 residential rehabilitation services listed on Public Health England’s website are solely for women.

Resistance to providing gender-specific mental health support

The report notes that 104 English local authorities and five Welsh unitary authorities providesupport for women experiencing mental health problems, with the voluntary sector playing a huge role in delivering these services.

More than half (55%) of mental health support identified in the report was aimed at pregnant women and new mothers.

Anecdotally, providing gender specific support for women who don’t fall under maternity or perinatal is met with “notable resistance” from several clinical commissioning groups. A typical response was that “all commissioned services are for men and women equally”.

Donna Covey, director of AVA, would like to see a change in mindset. “We know that delivering the same service for everyone doesn’t deliver equality of outcomes,” she explains. “To be effective, services needs to be trauma-informed and women specific. Central government needs to take the lead in making sure that these women get the support they need to rebuild their lives.”

Mapping the maze

AVA and Agenda have created an interactive map, pinpointing where specialist support is available for women affected by substance use, mental ill-health, homelessness and offending. It will also help to identify gaps in provision, and both organisations are encouraging voluntary organisations, commissioners and public service professionals to use the map as a resource.

Covey says many local authority commissioners have a poor understanding of what women experiencing multiple disadvantage want and need and don’t appreciate the importance of women-specific services.

The report makes a number of recommendations for commissioners and other professionals to address this, including:

  • Speak to women with lived experience and directly involve them in the commissioning process.
  • Promote a trauma-informed culture. Recognise that many women experiencing multiple disadvantage will also have experienced gender-based violence.
  • Be gender aware – specialist services are generally more effective than generic ones – and know that provision of specialist women’s services does not breach the Equality Act 2010.
  • Build longevity and flexibility into tenders. Helping women with complex lives in unlikely to fit neatly within short-term targets.
  • Practice joint commissioning and commission across localities. Commissioners should also ask bidders to demonstrate how they will ensure ease of access to services.

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