PARLIAMENTARY DEBATE
Young Adults with Spinal Injuries - 29 February 2024 (Commons/Commons Chamber)
Debate Detail
Contributions from Helen Whately, are highlighted with a yellow border.
Motion made, and Question proposed, That this House do now adjourn—(Mr Gagan Mohindra.)
15:44:24
Helen Hayes
Dulwich and West Norwood
I am grateful for the opportunity to open this debate, which I sought on behalf of my late constituent Tom Lazarides and his family, some of whom are present in the Public Gallery. Tom was a 20-year-old student at Durham University when, on 13 June 2020, he dived into a swimming pool and suffered a catastrophic spinal cord injury that left him paralysed.
In preparation for the debate, I reread an interview that Tom’s mother Bridget gave to a newspaper in October 2020. In that interview, Bridget spoke about her talented, sporty son, about how loved he was by all who knew him, and about the overwhelming outpouring of support for him from across the country. Bridget’s interview was also full of determination—Tom’s determination and hers—and hope that, despite the devastating nature of his injuries and the many challenges that he faced, with the love and support of his family and friends and good treatment and care, somehow Tom would be okay. I am sorry to report to the House that Tom Lazarides sadly passed away in November 2023.
Tom and his family were devastated by his injury. Instead of helping them to come to terms with what had happened, and enabling Tom to live as well as possible with his injury, the systems that should have been there to support him failed utterly to deliver the care that he needed. Tom’s spinal cord was permanently injured in two places. He was tetraplegic as a consequence, and had many health complications. He had a potentially fatal condition called autonomic dysreflexia, which causes unpredictable and dangerously high spikes in blood pressure. His skin was very fragile, leading to grade 4 bedsores. He had a tracheostomy, leading to communication difficulties. He was unable to cough, leading to repeated inhalation of food particles, which caused pneumonia and pulmonary oedema, and he suffered from muscular complications.
Tom had spent 18 months in hospital, including a year of rehabilitation at Stoke Mandeville. His injuries were permanent and unequivocal. They were well understood by his doctors, and were fully and properly documented. The injuries gave rise to a need for ongoing clinical care from qualified nurses, which could not possibly have been delivered by local authority social care. Tom was discharged from Stoke Mandeville in the autumn of 2021. Under the policy of discharge to assess, he was referred for consideration for NHS Continuing Healthcare funding.
According to the NHS, eligibility for Continuing Healthcare funding is determined on the basis of a person’s needs, rather than a particular diagnosis. There should be no limits on the setting where it can be provided or the type of support, and it is determined according to an assessment by the local NHS integrated care board. The assessment comprises two parts: the NHS continuing care checklist, which can be completed by a nurse, doctor, other healthcare professional or social worker, followed by a full assessment undertaken by a multidisciplinary team.
Tom’s assessment was completed in January 2022. His family raised concerns with me that the assessment process appeared to start with a blank sheet of paper and did not take into account anything that was already known about Tom’s injuries and their impact on his health. For example, he was asked by an assessor whether he got around the house on a Zimmer frame, and to show that he could not use his hands when he was clearly tetraplegic. His family were left with the constant impression that no one involved in the assessment, or in reviewing the decision later in the process, had ever properly read Tom’s medical records.
In May 2022, a decision was reached that Tom was not eligible for Continuing Healthcare funding. For Tom and everyone who knew him, the decision was as astonishing as it was devastating. Tom’s level of clinical need was crystal clear. As Tom’s mother has said to me on a number of occasions, all that needed to happen was for Tom’s very clear medical notes to be read. Tom’s family appealed the decision. The process was beset by difficulties, including changes of personnel at the case manager level, records being lost and constant delays. Tom found the visits to his home intrusive, and they had a detrimental impact on his already fragile mental health.
There was no prescribed timescale for the assessments and appeals, and no clear point of contact for Tom and his family to liaise with during the process. Tom and his family felt that there was constant pressure for him to move to a care home, despite the study published by Professor Brett Smith 12 years ago, which documented the very poor outcomes for young adults with spinal cord injuries who live in care homes, arising from their lack of agency in the decision to move to the care home, the shortage of properly skilled and qualified staff who can meet the needs of residents with spinal cord injuries, the lack of independence, and isolation. Tom was a bright young person with so much to contribute. What he wanted and needed was care and support at home, so that he could live well with the consequences of his spinal cord injury. In the last few months of his life, Tom repeatedly expressed a wish to end it. He simply could not see a positive future, when the struggle to access the care and support he needed was so difficult.
Tom Lazarides’ family have asked me to raise a number of issues that arise from his experience, which indicate the ways in which the healthcare system is simply not working for young adults with spinal cord injuries. The first is the discharge to assess policy. Discharge to assess is not designed for people with a catastrophic injury. What may be appropriate for a frail, elderly person who has had an emergency hospital admission, giving rise to concerns about their care needs at home, or for someone with a progressive condition that may be reaching the point at which more care is needed, is simply not appropriate for someone with a catastrophic permanent injury. It gives rise to a lack of continuity from hospital to home, and requires the person to be assessed by people who do not have the same detailed or specialist knowledge of their needs as the hospital clinicians who have been caring for them as an in-patient.
The second concern is that the patient has no involvement in decisions about their care. Tom was clear and consistent that he did not want to live in a care home. He was a bright and articulate young man whose paralysis should not have resulted in the removal of all agency in his own life, yet the completed decision support tool, the first stage in the assessment process, was submitted without being checked by Tom or his family. Panel meetings took place in a context of secrecy—about their membership, the dates and times of meetings, and the content of discussions. A system is not delivering patient-centred care when the patient is completely shut out of the decision- making process.
The third concern is the lack of any certainty or transparency about the timelines for decision making. The processes relating to Tom’s care took years, and the lack of continuing healthcare support had a profound impact on his day-to-day life during that time. Tom and his family simply had no idea when they would have any news about the next steps.
Everyone, the Lazarides family included, is acutely aware of the pressures on our health and social care system and the need to ensure value for money for the public purse, as well as ensuring safe, appropriate and high-quality care for individuals who need it. Tom’s case, however, was not a matter of resources. In the end, following the appeal, the ICB decided that he was eligible for continuing healthcare funding. The tragedy is that his family were only informed of this after he had died.
It is devastating for any young person to suffer a spinal cord injury that has life-changing consequences but, with the right care and support, it is possible to live a good life with independence and dignity. Depression is not inevitable, but poor mental health is sadly all too common. Tom Lazarides and his family encountered a system that seemed incapable of delivering the safe, appropriate, high-quality care and support that he needed and was entitled to. As a consequence, they spent the two years from Tom’s discharge from Stoke Mandeville Hospital in the autumn of 2021 to his untimely death in the autumn of 2023 constantly fighting a system that ultimately failed them.
What attention is the Minister paying to the experiences of young adults with spinal cord injury and the quality of care that they are able to access? What action is she taking to ensure that the quality and availability of care for young adults with spinal cord injury is consistent across the country? Will she look at the policy of discharge to assess and its appropriateness for patients with a sudden and permanent life-changing injury? Will she look at the assessment process for continuing health- care funding and take steps to ensure that a patient’s existing healthcare records always play an integral part? Finally, will she take steps to ensure that the assessment process for continuing healthcare funding has increased transparency and accountability, and increased certainty on the timescales and decision-making processes?
No one who reads the facts of Tom Lazarides’s injury and subsequent health needs could be in any doubt that he needed long-term nursing care to be safe and to live well with the consequences of his injury, yet the tragedy of his injury was compounded by the failure of our healthcare system to deliver the care that he needed, or indeed to treat him and his family with respect and dignity.
Tom’s family have asked me to raise his case, in order to press for accountability and for improvements for others. I look forward to the Minister’s response.
In preparation for the debate, I reread an interview that Tom’s mother Bridget gave to a newspaper in October 2020. In that interview, Bridget spoke about her talented, sporty son, about how loved he was by all who knew him, and about the overwhelming outpouring of support for him from across the country. Bridget’s interview was also full of determination—Tom’s determination and hers—and hope that, despite the devastating nature of his injuries and the many challenges that he faced, with the love and support of his family and friends and good treatment and care, somehow Tom would be okay. I am sorry to report to the House that Tom Lazarides sadly passed away in November 2023.
Tom and his family were devastated by his injury. Instead of helping them to come to terms with what had happened, and enabling Tom to live as well as possible with his injury, the systems that should have been there to support him failed utterly to deliver the care that he needed. Tom’s spinal cord was permanently injured in two places. He was tetraplegic as a consequence, and had many health complications. He had a potentially fatal condition called autonomic dysreflexia, which causes unpredictable and dangerously high spikes in blood pressure. His skin was very fragile, leading to grade 4 bedsores. He had a tracheostomy, leading to communication difficulties. He was unable to cough, leading to repeated inhalation of food particles, which caused pneumonia and pulmonary oedema, and he suffered from muscular complications.
Tom had spent 18 months in hospital, including a year of rehabilitation at Stoke Mandeville. His injuries were permanent and unequivocal. They were well understood by his doctors, and were fully and properly documented. The injuries gave rise to a need for ongoing clinical care from qualified nurses, which could not possibly have been delivered by local authority social care. Tom was discharged from Stoke Mandeville in the autumn of 2021. Under the policy of discharge to assess, he was referred for consideration for NHS Continuing Healthcare funding.
According to the NHS, eligibility for Continuing Healthcare funding is determined on the basis of a person’s needs, rather than a particular diagnosis. There should be no limits on the setting where it can be provided or the type of support, and it is determined according to an assessment by the local NHS integrated care board. The assessment comprises two parts: the NHS continuing care checklist, which can be completed by a nurse, doctor, other healthcare professional or social worker, followed by a full assessment undertaken by a multidisciplinary team.
Tom’s assessment was completed in January 2022. His family raised concerns with me that the assessment process appeared to start with a blank sheet of paper and did not take into account anything that was already known about Tom’s injuries and their impact on his health. For example, he was asked by an assessor whether he got around the house on a Zimmer frame, and to show that he could not use his hands when he was clearly tetraplegic. His family were left with the constant impression that no one involved in the assessment, or in reviewing the decision later in the process, had ever properly read Tom’s medical records.
In May 2022, a decision was reached that Tom was not eligible for Continuing Healthcare funding. For Tom and everyone who knew him, the decision was as astonishing as it was devastating. Tom’s level of clinical need was crystal clear. As Tom’s mother has said to me on a number of occasions, all that needed to happen was for Tom’s very clear medical notes to be read. Tom’s family appealed the decision. The process was beset by difficulties, including changes of personnel at the case manager level, records being lost and constant delays. Tom found the visits to his home intrusive, and they had a detrimental impact on his already fragile mental health.
There was no prescribed timescale for the assessments and appeals, and no clear point of contact for Tom and his family to liaise with during the process. Tom and his family felt that there was constant pressure for him to move to a care home, despite the study published by Professor Brett Smith 12 years ago, which documented the very poor outcomes for young adults with spinal cord injuries who live in care homes, arising from their lack of agency in the decision to move to the care home, the shortage of properly skilled and qualified staff who can meet the needs of residents with spinal cord injuries, the lack of independence, and isolation. Tom was a bright young person with so much to contribute. What he wanted and needed was care and support at home, so that he could live well with the consequences of his spinal cord injury. In the last few months of his life, Tom repeatedly expressed a wish to end it. He simply could not see a positive future, when the struggle to access the care and support he needed was so difficult.
Tom Lazarides’ family have asked me to raise a number of issues that arise from his experience, which indicate the ways in which the healthcare system is simply not working for young adults with spinal cord injuries. The first is the discharge to assess policy. Discharge to assess is not designed for people with a catastrophic injury. What may be appropriate for a frail, elderly person who has had an emergency hospital admission, giving rise to concerns about their care needs at home, or for someone with a progressive condition that may be reaching the point at which more care is needed, is simply not appropriate for someone with a catastrophic permanent injury. It gives rise to a lack of continuity from hospital to home, and requires the person to be assessed by people who do not have the same detailed or specialist knowledge of their needs as the hospital clinicians who have been caring for them as an in-patient.
The second concern is that the patient has no involvement in decisions about their care. Tom was clear and consistent that he did not want to live in a care home. He was a bright and articulate young man whose paralysis should not have resulted in the removal of all agency in his own life, yet the completed decision support tool, the first stage in the assessment process, was submitted without being checked by Tom or his family. Panel meetings took place in a context of secrecy—about their membership, the dates and times of meetings, and the content of discussions. A system is not delivering patient-centred care when the patient is completely shut out of the decision- making process.
The third concern is the lack of any certainty or transparency about the timelines for decision making. The processes relating to Tom’s care took years, and the lack of continuing healthcare support had a profound impact on his day-to-day life during that time. Tom and his family simply had no idea when they would have any news about the next steps.
Everyone, the Lazarides family included, is acutely aware of the pressures on our health and social care system and the need to ensure value for money for the public purse, as well as ensuring safe, appropriate and high-quality care for individuals who need it. Tom’s case, however, was not a matter of resources. In the end, following the appeal, the ICB decided that he was eligible for continuing healthcare funding. The tragedy is that his family were only informed of this after he had died.
It is devastating for any young person to suffer a spinal cord injury that has life-changing consequences but, with the right care and support, it is possible to live a good life with independence and dignity. Depression is not inevitable, but poor mental health is sadly all too common. Tom Lazarides and his family encountered a system that seemed incapable of delivering the safe, appropriate, high-quality care and support that he needed and was entitled to. As a consequence, they spent the two years from Tom’s discharge from Stoke Mandeville Hospital in the autumn of 2021 to his untimely death in the autumn of 2023 constantly fighting a system that ultimately failed them.
What attention is the Minister paying to the experiences of young adults with spinal cord injury and the quality of care that they are able to access? What action is she taking to ensure that the quality and availability of care for young adults with spinal cord injury is consistent across the country? Will she look at the policy of discharge to assess and its appropriateness for patients with a sudden and permanent life-changing injury? Will she look at the assessment process for continuing health- care funding and take steps to ensure that a patient’s existing healthcare records always play an integral part? Finally, will she take steps to ensure that the assessment process for continuing healthcare funding has increased transparency and accountability, and increased certainty on the timescales and decision-making processes?
No one who reads the facts of Tom Lazarides’s injury and subsequent health needs could be in any doubt that he needed long-term nursing care to be safe and to live well with the consequences of his injury, yet the tragedy of his injury was compounded by the failure of our healthcare system to deliver the care that he needed, or indeed to treat him and his family with respect and dignity.
Tom’s family have asked me to raise his case, in order to press for accountability and for improvements for others. I look forward to the Minister’s response.
17:13:12
Helen Whately
The Minister for Social Care
I thank the hon. Member for Dulwich and West Norwood (Helen Hayes) for securing this debate and for her powerful speech telling us about Tom Lazarides’s experience, his tragic accident and his injury. I welcome his family, who the hon. Lady said are here in Parliament today. I offer them my sincere condolences on the loss of Tom, who sadly died in November 2023.
I listened carefully to the hon. Lady’s speech, although I did not have advance sight of her comments, and I will do my best to respond. I assure her that I am happy to write to her with further details about the points she has raised this afternoon. I am responding as the Minister with oversight of continuing healthcare and discharge, so I will be able to say more on those points. Particularly in her summing up, she talked more generally about care for people with spinal injury, which can have such a devastating impact and can mean that a person needs a great deal of care from multidisciplinary NHS teams.
I could go into the way NHS England commissions services for spinal cord injuries—there is a national specification and a range of support—but I think I could make better use of the time today by picking up on the question of continuing healthcare and the discharge situation, which the hon. Lady outlined. She described how Tom’s family feel that the system failed him and his clearly complex health needs as a result of his injuries. She described the long time he spent in hospital and the long-term rehabilitation he needed, which meant he needed significant ongoing clinical care. She described how he was considered for continuing healthcare and the experience of the eligibility assessment, and how Tom and his family felt it did not take into account his injuries and health conditions, and did not take full account of his medical records. She described how he and the family were then told that he was not eligible. They subsequently and rightly appealed, and I heard how difficult the hon. Lady said that process clearly was for the family and for Tom, with the lack of transparency, the uncertainty, and the feeling that meetings happened without them and their involvement. I heard how Tom felt under pressure to move into a care home, when he really wanted to live well at home. All of us can completely understand that. Anyone, whether a young person such as Tom or someone of old age, wants to live as independently as possible, whatever their health needs at home. I also heard about the experience with discharge to assess.
Clearly, a process is in place for accessing NHS continuing healthcare. The intention of the process is to consider the individual’s clinical needs, the combination of those needs and how they come together, and therefore to assess whether somebody is eligible. The intention is to design a package of care around the individual to support them where they wish to live, be it at home or in a care home. First, a checklist is used, which leads to someone having an eligibility assessment. If I understood it correctly, Tom experienced and went through the eligibility assessment, but, as the hon. Lady mentioned, the initial decision was that he was not eligible. I am happy to make some inquiries. As a Minister, I cannot make a call on any particular decision that is made on an individual, but clearly I want always to be assured that the right process has been followed. It is probably helpful if, with the help of officials, I try to seek some further information outside the Chamber from the hon. Lady to see what I can do to understand fully what happened and to be assured as to whether there is anything we need to do to make the process work better, particularly in the circumstance that she has described, where somebody such as Tom has clearly had some severe injuries. I am also happy to meet her and Tom’s family to understand this process better.
The hon. Lady raised a point about discharge to assess and how it did not work for someone with a catastrophic injury. Again, we should pick that up in a conversation outside the Chamber. In general, the purpose of discharge to assess is a good one: to avoid people having long and unnecessary stays in hospital, where we know that frail and elderly people, in particular, are likely to decondition and live less independently as a result. She knows that well from the work that she does on social care. Once somebody has been discharged home, they are often able to live with more independence and regain mobility in a way that was not clear when they were assessed in hospital. Sometimes assessment in hospital will lead to delays and a longer stay in hospital, and to what is called over-prescription, with somebody ending up living longer in a care home when they might have continued at home. In general, discharge to assess is a good thing but, as I say, I am happy to look into the specific question of whether there might be circumstances, such as when somebody has had a very serious injury, when the process works differently. I will take that away.
The hon. Lady made a point about the involvement of patients in decisions about their care. It is fundamental that patients should be involved in decisions about their care, as should families and carers. In many circumstances, the patient and those around them will be the experts on what they will need. They need to be involved in the ramifications of whatever decisions are made. That should take place, but let us investigate further outside the Chamber whether that is working as it should be, together with the points she made about transparency and trying to ensure that people are involved when continuing healthcare is being assessed and considered.
I receive a significant amount of correspondence about continuing healthcare. The NHS has a challenging job to ensure that the decisions go the right way. I know the process can be long and hard for those involved in it. I want to ensure it works as well as it possibly can, so that those who should be eligible receive such care. I understand in Tom’s case that, after the appeal, the decision was made that he should be receiving continuing healthcare. How sad that that came after his death and after all the suffering that he and those close to him must have gone through.
I thank the hon. Lady for bringing Tom and his family’s situation to my attention. I commend her for her powerful speech and how clearly she put across the concerns. I look forward to speaking about this further outside the Chamber.
I listened carefully to the hon. Lady’s speech, although I did not have advance sight of her comments, and I will do my best to respond. I assure her that I am happy to write to her with further details about the points she has raised this afternoon. I am responding as the Minister with oversight of continuing healthcare and discharge, so I will be able to say more on those points. Particularly in her summing up, she talked more generally about care for people with spinal injury, which can have such a devastating impact and can mean that a person needs a great deal of care from multidisciplinary NHS teams.
I could go into the way NHS England commissions services for spinal cord injuries—there is a national specification and a range of support—but I think I could make better use of the time today by picking up on the question of continuing healthcare and the discharge situation, which the hon. Lady outlined. She described how Tom’s family feel that the system failed him and his clearly complex health needs as a result of his injuries. She described the long time he spent in hospital and the long-term rehabilitation he needed, which meant he needed significant ongoing clinical care. She described how he was considered for continuing healthcare and the experience of the eligibility assessment, and how Tom and his family felt it did not take into account his injuries and health conditions, and did not take full account of his medical records. She described how he and the family were then told that he was not eligible. They subsequently and rightly appealed, and I heard how difficult the hon. Lady said that process clearly was for the family and for Tom, with the lack of transparency, the uncertainty, and the feeling that meetings happened without them and their involvement. I heard how Tom felt under pressure to move into a care home, when he really wanted to live well at home. All of us can completely understand that. Anyone, whether a young person such as Tom or someone of old age, wants to live as independently as possible, whatever their health needs at home. I also heard about the experience with discharge to assess.
Clearly, a process is in place for accessing NHS continuing healthcare. The intention of the process is to consider the individual’s clinical needs, the combination of those needs and how they come together, and therefore to assess whether somebody is eligible. The intention is to design a package of care around the individual to support them where they wish to live, be it at home or in a care home. First, a checklist is used, which leads to someone having an eligibility assessment. If I understood it correctly, Tom experienced and went through the eligibility assessment, but, as the hon. Lady mentioned, the initial decision was that he was not eligible. I am happy to make some inquiries. As a Minister, I cannot make a call on any particular decision that is made on an individual, but clearly I want always to be assured that the right process has been followed. It is probably helpful if, with the help of officials, I try to seek some further information outside the Chamber from the hon. Lady to see what I can do to understand fully what happened and to be assured as to whether there is anything we need to do to make the process work better, particularly in the circumstance that she has described, where somebody such as Tom has clearly had some severe injuries. I am also happy to meet her and Tom’s family to understand this process better.
The hon. Lady raised a point about discharge to assess and how it did not work for someone with a catastrophic injury. Again, we should pick that up in a conversation outside the Chamber. In general, the purpose of discharge to assess is a good one: to avoid people having long and unnecessary stays in hospital, where we know that frail and elderly people, in particular, are likely to decondition and live less independently as a result. She knows that well from the work that she does on social care. Once somebody has been discharged home, they are often able to live with more independence and regain mobility in a way that was not clear when they were assessed in hospital. Sometimes assessment in hospital will lead to delays and a longer stay in hospital, and to what is called over-prescription, with somebody ending up living longer in a care home when they might have continued at home. In general, discharge to assess is a good thing but, as I say, I am happy to look into the specific question of whether there might be circumstances, such as when somebody has had a very serious injury, when the process works differently. I will take that away.
The hon. Lady made a point about the involvement of patients in decisions about their care. It is fundamental that patients should be involved in decisions about their care, as should families and carers. In many circumstances, the patient and those around them will be the experts on what they will need. They need to be involved in the ramifications of whatever decisions are made. That should take place, but let us investigate further outside the Chamber whether that is working as it should be, together with the points she made about transparency and trying to ensure that people are involved when continuing healthcare is being assessed and considered.
I receive a significant amount of correspondence about continuing healthcare. The NHS has a challenging job to ensure that the decisions go the right way. I know the process can be long and hard for those involved in it. I want to ensure it works as well as it possibly can, so that those who should be eligible receive such care. I understand in Tom’s case that, after the appeal, the decision was made that he should be receiving continuing healthcare. How sad that that came after his death and after all the suffering that he and those close to him must have gone through.
I thank the hon. Lady for bringing Tom and his family’s situation to my attention. I commend her for her powerful speech and how clearly she put across the concerns. I look forward to speaking about this further outside the Chamber.
Mr Nigel Evans
Mr Deputy Speaker
I pass on the deepest condolences of everybody here at the House of Commons to Tom’s family, friends and all who mourn his passing. It was a very moving speech.
Question put and agreed to.
Question put and agreed to.
House adjourned.
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