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On the 10 April 2025, the Health Services Safety Investigations Body (HSSIB) published a report looking at how care is co-ordinated for people with long-term conditions. In particular, the investigation considered the role of ‘care co-ordinator’ to understand how care is co-ordinated within the existing workforce. In this blog, Patient Safety Learning sets out its reflections on the findings and recommendations in this report. HSSIB investigates patient safety concerns across the NHS in England and in independent healthcare settings where safety learning could also help to improve NHS care. Their latest report looks at primary and community care co-ordination for people with long-term conditions, specifically considering the role of ‘care coordinator’ in this context.[1] While language around the care coordination is varied, the role of care co-ordinated is defined by NHS England as follows: “Care co-ordinators help to co-ordinate and navigate care across the health and care system, helping people make the right connections, with the right teams at the right time. They can support people to become more active in their own health and care and are skilled in assessing people’s changing needs. Care co-ordinators are effective in bringing together multidisciplinary teams to support people’s complex health and care needs.”[2] In this blog we set out our reflections on the findings and recommendations in this HSSIB investigation. Challenges navigating the healthcare system Navigating the healthcare system in the UK can be complex and frustrating for patients, families and carers. At Patient Safety Learning we hear time and time again about the lack of joined up care and communication within and across organisations. Failing to share the right information at the right time can create significant patient safety risks. Poor communications, both with patients and between healthcare professionals, can result in misunderstandings and mistakes resulting in poor outcomes and potentially patient harm. In a recent series of blogs published on the hub, patients and their relatives shared with us the challenges and barriers they have faced when trying to navigate the healthcare system.[3] The concerns and issues raised in this HSSIB investigation echo many of the key themes we identified in our new blog series. Confusing communications HSSIB’s report refers to the case of a child prescribed anti-epileptic medication by a specialist hospital to reduce the number and severity of their seizures. It then details the difficulties the parents subsequently found in getting this medication through their GP or consultant. The parents highlighted concerns about the lack of communication between the separate services, with the report noting: “The parents told the investigation that they were ‘exhausted’ because of the effort they had had to put in over the years to connect services together, having to tell the same story over and over again, while having to provide care for their child.” Delays to treatment The investigation report also highlights the case of a middle-aged professional working man who suffered a stroke. He received hospital care to treat and manage his healthcare needs; however, once discharged he encountered significant difficulties when seeking appropriate support for his additional healthcare needs. HSSIB highlighted how he had told them it required significant effort from him directly to ensure the right level of care was maintained for his needs. Recounting his experience, the report states: “He said that these multiple agencies ‘all operate in their own silos’ and not as a team, and that ‘there was nobody to create that team [a cross-system team aware of all his health and care concerns]’. The way that he and his wife cope with this situation is that they ‘manage the team’ to connect the individual parts of the system and get the care he needs.” Impact on mental health HSSIB also spoke to a man in his late seventies who is the main carer for his wife. She has multiple long-term conditions that require primary, secondary and community care. Reflecting on the impact that coordinating her care had on their lives, the report noted: “The husband explained that his role of care co-ordinator had placed a considerable burden on him, which led him to ‘feel overwhelmed’. He said that because he needing to act as her ‘co-ordinator’ he was unable to spend time with his wife as her husband. He also described having to administer medication and dress his wife’s wound which caused her considerable pain.” HSSIB’s investigation also highlights broader areas of concern relating to the coordination of care in the healthcare system, again mirroring themes raised we heard from patients in our recent blog series. Difficulties sharing information The investigation highlights a recurring concern around problems sharing patient information and the negative impact of this on coordinating a patient’s care. It highlights both issues of digital systems in different organisations not being compatible with one another and other barriers, stating: “Healthcare professionals described the challenges in information sharing. Digital patient records could not be viewed across primary, community, secondary and tertiary care because information technology systems are unable to ‘talk to each other’. They also said that sometimes they were unsure whether patient information could be shared as it was ‘protected information’. This was a particular problem when trying to share information between health and social care.” A complex and confusing system The report also reflects more broadly on how accessing and navigating health and care services can be difficult and complex, and potentially overwhelming for patients. This was highlighted by examples such as this from the investigation: “A GP practice told the investigation that it had tried to put together an easy-to-read document explaining the care pathway for patients with dementia, including contact numbers and ways to access services. The GP practice went on to say that the system was so complex that it was unable to bring together all the information. It stated: ‘We are healthcare professionals and we can’t do this, so how can patients cope?’” Safety recommendations A theme that runs throughout HSSIB’s investigation is that there is a clear need and support for the role of care co-ordination. It highlights that while patients and carers can, and often do, themselves act in this role, when they are unwell or unable to do so a patient’s care can be significantly impacted. The report states that the availability of care co-ordination varies widely across the system. This is a particular issue for those living with multiple long-term conditions as there is no single centralised care co-ordination function to span across primary, secondary and tertiary care. Concluding its investigation, HSSIB recommends that: NHS England/Department of Health and Social Care, working with other relevant organisations, reviews and evaluates the implementation of the care co-ordinator role. This is to ensure that all patients with long-term conditions have their care co-ordinated and that they have a single point of contact 24 hours a day, 7 days a week, to help them with any queries or concerns that they may have. The Department of Health and Social Care works with NHS England and other stakeholders to develop a strategy that ensures that all diseases are given parity and that all people with a long-term condition in primary, secondary, tertiary and community or social care have their care effectively co-ordinated across multiple agencies. This is to ensure that people with long-term health conditions have co-ordinated care plans with effective communication between services and a single point of contact for concerns or questions. Patient Safety Learning agrees that there needs to be greater time and investment into care coordination. On the first recommendation, we would note that seeking to ensure all patients with long-term conditions have a single point of contact 24 hours of day, 7 days a week, would be a significant shift from the status quo. This would require a clear commitment of both financial and workforce resources from NHS England and the Department of Health and Social Care to deliver. In considering how this might be approached, it would also be important to consider: How this can be flexible depending on the long-term condition in question. Different conditions will require different levels and types of coordination. Systemic barriers that result in many of the difficulties navigating the care system would not be addressed by implementing this recommendation. For example: – We would continue to have various digital systems in primary, secondary and tertiary care that lack interoperability (the ability of computer systems or software to exchange and make use of information). – Non-digital communication barriers that prevent cross-organisational sharing of information in the NHS, ranging from data sharing restrictions to cultural attitudes within organisations, would also remain. On the second recommendation we agree with the principle of this, that there needs to be parity for people with a long-term condition and an expectation that their care is effectively co-ordinated across multiple agencies. Poorly coordinated care is not only confusing and frustrating for patients but also creates safety risks that can result in serious avoidable harm. Concluding comments The challenges of navigating the healthcare system discussed in this report are not a new issue, but a long-standing set of problems that do not have a simple solution. Their impact on patient experiences and outcomes is exacerbated in the current environment, when our healthcare system that is under increasing pressure and in a “critical condition”.[4] Patient Safety Learning believes that care co-ordination should form an important area of focus for the UK Government’s forthcoming 10 Year Health Plan. If it is to achieve its strategic ‘shift’ of moving the future of the NHS from "hospital to community" this will require a healthcare system where patients aren’t simply left to "join the dots for patient safety".[5] This will require organisational and leadership commitment to take forward the issues raised in this HSSIB investigation. The needs of patients should be central to improving health and care services, actively listening and acting on their experiences and insights when things go wrong for safety improvement. References HSSIB. Workforce and patient safety: primary and community care co-ordination for people with long-term conditions, 10 April 2025. NHS England. Care co-ordinators, Last accessed 10 April 2025. Patient Safety Learning. The challenges of navigating the healthcare system, 24 February 2025. UK Parliament. NHS: Independent Investigation, Hansard, Volume 753, 12 September 2024. Department of Health and Social Care, Independent report: Review into the operational effectiveness of the Care Quality Commission, 15 October 2024. Related reading Digital-only prescription requests: An elderly woman sent round the houses How the Patients Association helpline can help you navigate your care Lost in the system? NHS referrals Navigating the healthcare system as a university student: My personal experience The challenges of navigating the healthcare system: David's story The challenges of navigating the healthcare system: Sue's story Share your story What has been your experience of navigating the healthcare system? What is and isn’t working? How does it feel as a patient or carer when you hit barriers? Has your health been affected? Share your story in our community forum or contact our editorial team at [email protected].

In early 2022, following his wishes, my husband was discharged from hospital for end of life care at home to be provided by his family (his wife, three adult children and son-in-law) and nurses from our local hospice. We were completely unprepared for the challenges and disruption that lay ahead for us all.  Challenges during discharge The first challenge we encountered was receiving conflicting, confusing information from different staff members regarding my husband’s prognosis and future treatment and care. His consultant and their team were optimistic, speaking of further tests and a possible response to treatment in 3 weeks’ time. It was in that meeting, and on that basis, that we supported discharge and discussed arrangements. But the senior specialist nurse caring for him was alarmed by what we had been told. Immediately after the meeting they took us aside to tell us that, in their view, my husband had only days left to live. Although unsettled by this conflicting information, we preferred to believe in the more optimistic prognosis. On that understanding, we began to make preparations. At this point we knew: My husband would be taken home by ambulance the next day. A hospital bed and other equipment would be delivered to our home the next morning. We would receive a supply of medication on leaving the hospital. Hospice nurses would visit us twice a day to assist, starting the next day. Apart from needing a family member to wait at home in the morning to receive the bed, we thought we would be able to spend his last day in hospital quietly by his bedside. What actually happened couldn’t have been more disorderly or more disturbing. In practice, in addition to receiving the conflicting prognoses, this is what we experienced before discharge: My husband’s discharge was delayed by more than 48 hours, as hospital staff had great difficulty coordinating everything required for his move home. There were significant requirements we had not been told about, such as the need for an oxygen supply at home, which had to be located at a distance from a gas supply. The coordination difficulties meant that one of us waited alone at home for two full days, to receive the hospital bed and other equipment. This family member was therefore unable to be with my husband for an extended period at a critical time. On the second day of the delay, in direct contradiction of their advice the previous day, the ward sister advised us to take an immediate patient transport appointment even though it would mean going home before the hospital bed had arrived, and without any confirmation of when, or if, one would arrive. As the day went on, this nurse’s exhortations to leave without a bed in place at home were repeated and increasingly aggressive, and included the threat that there would, as a result, be no guarantee that hospice nurses could support us when we did eventually get home. We experienced this as bullying, coercive behaviour that greatly confused and disturbed us at a time when we most needed clarity, consistency and sensitivity. Delivery of the hospital bed was not straightforward. Access had not been checked beforehand, and when the bed arrived it was found that the layout of the house made it impossible to move it into a bedroom. With some difficulty, it was placed in the living room. The other equipment included an oxygen supply. This was not straightforward either. The bed had been placed near a gas fire. It had to be moved to a safe distance from the gas supply, which required taking furniture out of the room, difficult for the one family member at home handling this situation. Ward staff had contacted our local hospice on our behalf. We asked to have direct contact with the hospice ourselves so we could confirm arrangements. The ward sister (the one whose behaviour we had experienced as coercive) advised us not to contact them. We complied with this and so we left the hospital with no information about what the hospice nurses knew of my husband’s condition and no direct confirmation of their visits. This felt very insecure and contributed to our stress. We felt thrust into the unknown when we were at our most vulnerable by a system that didn’t want us. While we worked our way through all the problems, my husband’s condition was deteriorating, and he was suffering. He had a high temperature, great pain and nausea. But once the discharge decision was taken, nursing staff stopped taking his observations, stopped providing him with any medication to relieve symptoms and stopped washing him and providing meals. We had to insist that he be provided with some ongoing care and medication, and although he did receive the latter we had to overcome considerable resistance. These problems compounded one another and created chaotic, confusing circumstances. All family members at the hospital were spending their time running around, trying to get assistance and accurate information about what was happening and when from the various departments involved in the discharge of a patient in palliative care, all the while trying to be present for my husband and trying to ensure his comfort. We’d been very wrong indeed to have thought that we could spend the period before discharge gathered round his bedside, gently reminiscing. Challenges at home Once home, we faced further difficulties: There was a great deal to learn: how to operate the hospital bed; how to store and use the oxygen supply safely; how and when to administer the medication supply; how to turn my husband, and deal with incontinence; and how and when to try to feed him or give fluids. We all (including the hospice nurses) struggled to understand the medication which had been provided. We’d received 15 different drugs. They were to be administered according to widely varying schedules and had different means of administration (subcutaneous, injection, oral rinse, sublingual, oral). The explanations provided were delivered rapidly while we were standing in a congested corridor inches from my husband who was being removed by the ambulance staff, when he needed me and was calling to me. We had no opportunity to confirm our understanding of the different medications or to check the contents of the bag before we left the hospital. At home, we found several errors to the medication supply. There was a supply of chemotherapy medication that wasn’t prescribed. There was no supply of other medication that was prescribed. Most critically, we hadn’t received any pain relief medication in a form that we could administer, as my husband’s condition had deteriorated significantly during the delay to his discharge and he became unable to swallow. As a result, just a few hours before he died, at the advice of the hospice nurses who were waiting to receive a syringe driver for intravenous morphine administration, I was compelled to drive from pharmacy to pharmacy searching for pain relief medication that we could administer. I deeply regret that time away from my husband’s bedside. The hospice nurses arrived at our home a few hours after we did. We spent a significant period of time briefing them on their first visit. They needed details of my husband’s medical history, condition, and medication. This also took time away from his bedside. We found there were errors to the information recorded in the discharge summary we’d received on his departure from hospital. One was to his condition, which was assessed and recorded as ‘moderately frail’ (it had been erroneously auto-populated with admission data and should have been ‘terminally ill’). This information bewildered and misled us (causing some family members to delay visiting him, believing he was fitter than he was, for example) and created difficulties for the hospice nurses. They had prepared to assist someone ‘moderately frail’ and it took them time to adjust and get the necessary equipment and pain relief. Consequently my husband didn’t receive intravenous morphine until one hour before he died. As a result of these and many other issues, 34 hours after arriving home, my husband died having endured terrible pain and distress in chaotic and undignified conditions, which was devastating for his family to witness. Learning from experience If we had been aware of what we were undertaking, seeing how quickly my husband was deteriorating during the delay and understanding how little time we had left, we would have encouraged him to remain in hospital and explained to him why going home wasn’t a good idea. We wouldn’t have supported the decision to discharge him home. The delayed discharge and the short time that remained to us meant that all the problems we experienced were concentrated, and much harder to deal with as a result. This detracted from the very precious few hours that we had left together. Even the period immediately after his death was affected. We’d had no time to find out what happens once someone has died, and were devastated to learn, at 1 am, that we needed to identify undertakers as a matter of some urgency. Given the delay to my husband’s discharge and his deterioration, we should have asked for his suitability for discharge to be reassessed. As part of that reassessment, we should also have insisted on a review of his medication, particularly his pain relief medication. He left with a supply of medication that was based on an assessment of his condition made three days before his discharge. But even when everything goes smoothly and there are none of the problems described above, taking someone home for end of life care is still a major undertaking. The following could be useful for anyone preparing to do that. Key things needed to help families prepare to take someone home for end of life care 1. A handbook, providing: A checklist of what should happen and in what order, once the decision to discharge a patient has been made. Contact information for all hospital departments involved in discharging a patient for end of life care at home, including an indication of who’s responsible for what. The advice to find, if possible, a more distant relative, a friend or a neighbour willing to be at your home to receive the hospital bed and other items on your behalf. Instructions for use of all of the equipment provided, e.g. the hospital bed and the safe storage and use of the oxygen supply. Instructions for how to care for a bed bound patient in palliative care, e.g. how to turn them, wash them, deal with incontinence, how to feed them and provide liquids, and the best position for them to be in to facilitate breathing and their general comfort. Contact information and details of available support in the community, including, for example, pharmacy opening hours. A checklist of what items are needed to make the patient as comfortable as possible once home. Instructions for what needs to be done in the hours following death. 2. Contact with the hospice before discharge A meeting or phone call in which the patient’s medical history, condition and medication is shared. Information about what to expect e.g. visit frequency, timing and length; what the nurses will do/not do; how to manage in between visits and what support is available then, especially at night or otherwise out of hours. The hospice contact details, including emergency numbers. 3. A private meeting, in the hours prior to discharge, between the primary caregiver and a nurse familiar with the patient’s care and condition, enabling: A discussion of the patient’s ongoing care. An explanation of the discharge summary (and checking accuracy). A review of, and instructions for, the medication supply, including which medication should be prioritised in the event that not all can be administered. Confirmation that pain relief medication is provided in a form that can be administered as a patient in palliative care is likely to become unable to swallow. All of the above needs time. With time, the transition home is more likely to be successful. But if time is short, and particularly if problems arise, there can be concentrated chaos and confusion, likely to detract from the patient’s last hours and interfere with their care, as we found. For these reasons, in our experience, it isn’t viable or advisable to take a patient home from hospital for end of life care when they are deteriorating and it seems likely that only hours or days remain. If my husband had remained in hospital he would have received undisrupted care and medication (albeit in our case only with our insistence). All members of his family would have been able to be at his bedside throughout. He would have died in less pain, in more comfort and security, and with his dignity intact. And his family would have been much less traumatised by the experience. We live with enduring shame and sorrow for his suffering. What makes it worse is that much of it could have been avoided. Motivated by a desire to reduce the possibility of others suffering as we had done, in 2022 we submitted 20 complaints to the hospital concerned. Following a largely unsatisfactory response, we made a submission to the Parliamentary and Health Service Ombudsman. Our efforts over 16 months to bring about improvement are documented here. Related reading on the hub: HSIB: Variations in the delivery of palliative care services to adults Patients who experience harm provide stories, but who will really engage with their insights and opinions? Top picks: Eight resources about hospice and palliative care

Constipation can be a life–threatening issue for people with a learning disability who are at heightened risk from complications if it is left untreated. This campaign has been developed by NHS England to support people with a learning disability, their carers and people who work in primary care to recognise the signs of constipation. Resources have been co–created with input from the Down’s Syndrome Association, Mencap and Pathways Associates to ensure that they are fit for purpose. The resources aim to: Drive awareness of the seriousness of constipation Help people recognise the signs of constipation at an early stage Empower people to take action and ensure that people with a learning disability experiencing constipation get the right health support straight away Raise awareness of the steps which can be taken to prevent constipation.

Melanie Whitfield, Associate Director of Patient Safety at Kingston NHS Foundation Trust, and Helen Hughes, Chief Executive of Patient Safety Learning, recently ran a workshop for Patient Safety Partners (PSPs) at the Kingston Trust. Here is a summary of the workshop. PSPs are vital in bridging the gap between healthcare providers in the UK and the patients who use these services. They are the patient’s voice and enable us, as providers, to ensure we are putting our patients first, challenging us when things go wrong and asking the difficult questions. But what is their role and why are they so important? In July 2019, the NHS Patient Safety Strategy was released with a framework for PSP involvement in healthcare organisational safety. This relates to the role that patients, carers and other lay people can play in supporting and contributing to a healthcare organisations’ governance and management processes for enhancing and improving patient safety. This is a voluntary role with the official allocated time given to PSPs to complete their work at Kingston being 1.5 days per month. The role for PSP’s was outlined as follows: Membership of safety and quality committees whose responsibilities include the review and analysis of safety data. Involvement in patient safety improvement projects. Working with organisation boards to consider how to improve safety. Involvement in staff patient safety training. Participation of investigation oversight groups. We know that the opportunity and benefit of PSPs is so much more than this. So Melanie and Helen developed the idea of a workshop for PSPs, the patient safety team, the staff wellbeing chaplain and PEPI lead to share experiences of the first year of PSPs, to learn from each other from this experience, celebrate achievements and impact, and to discuss opportunities to promote listening and learning from patients to shape the future journey. Helen facilitated the workshop and the discussions and outcomes of this are outlined below. The session started with what do we want from PSPs. Reflections included: Take us out of our comfort zone; challenge us on our actions and evidence and ‘bring us back to reality’ of what it’s like to be a patient or family member. Help us look at systems and culture and for PSPs to ask difficult/challenging questions – ‘lift the rocks and see what’s underneath’. Remind us that following up when things go wrong isn’t just about incident reviews and report writing, there are patients involved. Help us close the gap between patients and staff and build the interaction between patients, staff and patient and staff safety. Bridging the gap between patients and clinicians responsible for them. Leadership and insight by doing together. Patient safety improvement and prevention by providing information to patients sooner. Improving communication by being more visible. Raising PSP profile for staff and patients. Access to networks within the community. Real time listening rather than delayed Duty of Candour. Usefulness of speaking up and the consequences of not wanting to. Everyone agreed this is a huge and challenging agenda but it’s what’s needed. There was huge energy in the room and motivation to work collaboratively to address these issues. During the workshop Three of the PSPs were then asked for an insight into their role, what they want to achieve from the role and what barriers they face. This was a rich session with much insight, including these issues highlighted by PSP colleagues: We’re all passionate about patient’s voice being heard; what can we do to help the NHS and give back. There’s a real desire to fix things and it make better and to implement ideas that can be easily rolled out. It’s still an evolving role – by the time we’ve got the skills and knowledge to do a good job our time in the role may be at an end, so we need to create longevity in the role, including succession planning. There are huge amounts of learning to be done. Opportunity to be more effective by being project based and utilising volunteers. Feeling really welcomed and accepted; feeling lucky to be a part of the team. The value of PSPs being outside ‘experts’ who may have access to other networks, e.g. in voluntary sector, children’s services How do we best use PSP individual experience and knowledge? Awareness of staff pressures. There’s a huge opportunity for PSPs but do we have sufficient numbers and time? Opportunity to demonstrate value and create the business case for more resourcing. Meetings are often fast paced meetings with no time to ask questions; if decisions are already made, what’s the value that PSPs can bring? And it’s a real struggle to understand NHS terminology and jargon. There is a need for improved visibility of PSPs, with staff and patients; comms and engagement strategies needed. Demonstrate the credibility of the role. Difficulties of families having their voice heard. How can patients be signposted, what are the communication pathways? “I’ve attended meetings where Trust colleagues didn’t understand who we were or what our role entailed. We need clear guidance on our job description and need better visibility to Trust colleagues, so they know who we are. I would love for us to be involved in policy writing and attend formative discussions on major transformation project with high impact on patient safety.” Michelle Deans – Hounslow and Richmond Community Healthcare. “Patients need to have their voices heard; therefore, a clear communication pathway is essential. The language used by clinicians in incident reports is far too complex for the average reader to understand and often implies negative connotations. We need to be fully visible for both staff and patients, but we only have so much time.” Sue Strudwick – Kingston Hospital Foundation Trust. “I’ve struggled with understanding NHS terminology having had no clinical or NHS experience in my life. The meetings we are asked to attend can often be fast paced with no time to ask questions. I would love this role to be more project based utilising hospital volunteers.” Chloe Scott – Hounslow and Richmond Community Healthcare. As you can see, the PSPs have challenges within their roles which is no doubt reflected across the country. The workshop provided an opportunity for the PSPs and staff to come up with ways to work together to improve patient safety. Everyone agreed the biggest opportunities would come from visibility, education and direct engagement with patients. Here are some of the ideas that came up: Use of social media channels to publicise the role of the PSP at the Trust, including visibility on our internet and intranet page. Frontline patient engagement, including ward walkabouts, pop-up desks and drop-in sessions. PSPs to hold us to account when things have gone wrong ensuring constructive follow up on action plans and improvements. Spreading the word through patient stories and experiences. PSPs to have regular interaction/involvement with quality improvement to influence what projects are completed and how the patients are involved. Collaborative/cross organisational working. More thinking is needed on how we recruit PSPs that reflect the diversity of the community we serve. Involvement in the new Patient Safety Incident Response Framework (PSIRF) and patient safety incident investigations (PSIIs). It is important we highlight to the staff and patients that patients and families need to be able to speak to the right people in real time. We don’t want something to go wrong and then people pick up on it afterwards; we want to encourage staff and patients to speak up when they have questions that need answering and to be able to be listened to when they recognise that something is about to go wrong. We know we can’t stop things from going wrong, but prevention and learning from incidents is well within our control. With the help of our PSPs and educating patients and staff, we can make the necessary improvements to ensure our patient’s safety is always our priority. We hope that by sharing this blog with colleagues in the NHS in England, others can learn from the ambition, excitement and opportunity at Kingston for the PSP role. As we develop, we’re keen to share our journey and collaborate with colleagues, through the newly established Patient Safety Partnership Network and with Dr Henrietta Hughes, the Patient Safety Commissioner.

A new report published by Carers Scotland shows the devasting impact the health and social care crisis is having on the health of Scotland’s 800,000 unpaid carers.  Over a quarter of carers (28%) said their mental health is bad or very bad, rising to 37% for carers on Carer’s Allowance. A third (36%) of carers said that they had thoughts related to self-harm or suicide. Over half (54%) of carers said that their physical health had suffered because of their caring role, with one in five (20%) suffering a physical injury from caring. The results of a survey of over 1,700 Scottish unpaid carers shows the ongoing struggle that they are facing to access the services and support they need to care and manage their health and wellbeing. Despite their huge contribution to the Scottish economy, to our communities and to the lives of the people they care for, carers are facing deteriorating physical and mental health, loneliness and isolation with too many driven to deep mental despair as they are denied the support they need to maintain a healthy life. Only a third (38%) of carers are receiving support from formal social care services and over a third (35%) have not had any break from caring in the last year. There is lack of involvement of carers on hospital discharge with 60% not engaged by health services, despite being expected to provide care to someone at home. Only 18% were provided with sufficient support on discharge to protect their health or the health of the person they care for. Caring, particularly with such insufficient support, is damaging carers mental health. Carers shared in detail the impact that caring had on their mental health, with the majority (88%) having difficulty sleeping, continuous low mood (85%) and feelings of hopelessness (82%) including regularly feeling tearful (71%). This has led a shocking level of carers saying that they have thoughts of self-harm or suicide. And, concerningly, this lack of support from both health and social care services leaves little time for carers to look after their own health, with four in 10 (41%) saying that they have had to put off receiving healthcare treatment because of their caring role.