Healthcare safety watchdog, the Health Services Safety Investigations Body (HSSIB), has warned that poor coordination of NHS care is causing harm to people with long-term and complex health care needs and their carers. HSSIB’s investigation report: Workforce and patient safety: primary and community care co-ordination for people with long-term conditions highlights the frustrations and stress suffered by families and carers as they try to secure the care that their loved ones need from a ‘broken’, uncommunicative and fragmented healthcare system. With an estimated 41% of adults and 17% of children in England having at least long-term medical condition, and nearly 15% currently living with two or more health disorders, HSSIB’s findings will come as no surprise to families caring for children with cerebral palsy or neurodevelopmental disability, and adults with complex care needs from conditions such as cancer, asthma, diabetes and heart disease. Whilst the NHS Long Term Plan and multiple guidelines and standards suggest that high levels of care coordination exist, HSSIB’s investigation found that patients, families and carers face daily, and potentially harmful, challenges with care coordination. Why is it so difficult to obtain coordinated care for patients with long-term or complex needs? According to NHS England’s ‘Workforce development framework for care co-ordinators’, ‘a person with complex needs may be getting health and care support from many different professionals, including nurses, counsellors, therapists, activity workers, GPs, surgeons, care worker and managers. Care coordinators help link all this care together’. HSSIB found that the healthcare system uses various names to describe the role of an NHS care coordinator (NHS England), key worker (NHS), carer champion (NICE) or care navigator (BMA), and has multiple guidelines and strategies recognising the need for people with long-term and complex health conditions to have coordinated care, facilitated by a care coordinator. However, there is no single person, role or organisation responsible for coordinating care for people with long-term or complex health and care needs across multiple health and care organisations. Instead, the system focusses on individual diseases or issues, leaving people with complex care needs struggling to coordinate their own care from a complicated and uncoordinated system. In many cases, patients turn to the charity sector for assistance. Throughout the investigation, HSSIB found that coordination of healthcare is hampered by difficulties with sharing patient information, information technology (IT) systems that cannot talk to each other, lack of communication between primary, community, secondary and tertiary care, and delays in hospital discharge letters taking several weeks to reach patients’ GPs. This leaves doctors dependent on patients and carers to fill the communication gaps by verbally providing their information before making decisions about their healthcare. How are family carers and patients affected by lack of coordinated care? Patients and carers told the investigation that before they needed to use NHS services regularly, they believed that the healthcare system was joined up. They assumed that carers or patients would not be responsible for chasing results and appointments, and thought that information would be transferred between secondary care, primary care and community care. They found the reality was starkly different in that, as patients and carers, they were left to coordinate their care. Patients and carers found themselves acting as the hub, constantly having to provide information and take responsibility for coordinating their own or their child’s care. They told HSSIB that they are frustrated with continually having to retell their medical history to new health and care providers or when talking to someone new at a service they have used before. Retelling their story felt traumatic, took a significant amount of time which could be used more productively, and caused anxiety and feelings that they are “alone” in the system when they can’t find the right person to talk to about their care. The carers’ charity, Carers UK, told the investigation that carers often have to carry out physically demanding tasks during the day and at night, such as lifting the person they are caring for in and out of bed, providing personal care and giving medication. Over time, this causes the carers to develop physical and mental health concerns that they do not have time or energy to address, given the additional effort and stress it takes to find care or support for themselves. This inevitably has an impact on the person being cared for. Carers described the extreme tiredness caused by caring for someone with multiple long-term conditions, coordinating their care, and spending time on calls with clinicians and social workers trying to access the right care. HSSIB found that carers were often overwhelmed, burnt out, frustrated, angry and exhausted after years of caring and coordinating care. Some felt guilty about the impact that trying to navigate the health and care system was having on their own health and the health of the person being cared for. HSSIB learned that carers were also aware of other carers in similar situations who couldn’t get the care that was needed because they couldn’t articulate the needs of the person they were caring for. Many felt that ‘whoever shouts the loudest gets the care’, but carers didn’t always know how to raise care coordination concerns or whom to contact for help, or didn’t want to ‘bother’ anyone for something they felt they should be able to resolve themselves. This led to carers giving up and accepting the system as it is, or disengaging with the health and care system owing to exhaustion and frustration. Patients, carers and other stakeholders recognised that without the dedication and effort that carers put into managing patients’ care, appointments and connecting health care services, patients would not get the care that they need. They worried about who would look after the carers when they can’t carry on, and felt that carers are not valued. Carers felt that health and care organisations have too many people going around in a circle instead of providing answers to problems because staff can only work within the structures of their organisation. Meanwhile, health and care staff told HSSIB that they knew what needed to be done to provide coordinated care, but had neither the influence nor the ability to resolve these types of concerns. The parent carer’s experience One parent told the investigation that their child had a life-limiting neurological condition. After discharge from an admission to a specialist hospital, they were given a prescription for anti-epileptic medication to reduce their frequent, severe seizures. The 10-day prescription assumed that the child’s GP would continue prescribing the medication but the GP refused as the medication was only licenced for adults. The tertiary (specialist) hospital had correctly prescribed it within the rules which governed that hospital. The medicine was working and the child’s parents feared that after the 10- day supply ran out their child’s condition would deteriorate. On advice from the tertiary hospital, the parents asked the child’s treating respiratory consultant at their local hospital to prescribe the anti-epileptic medicine, but the local hospital could not prescribe the medication for a condition it was not managing. This left the family unable to get a prescription for essential anti-epileptic medication which was clearly benefitting their child. The situation was eventually resolved by the tertiary hospital supporting the family with short-term prescriptions. Throughout the 10-day period, the parents spent a significant proportion of their time emailing and telephoning healthcare professionals and services to resolve their concern about their child’s medication. This reduced their quality time with their child, caused anxiety and frustration, and undermined their trust in the healthcare system. They learned that nobody had responsibility for connecting the GP, secondary and tertiary hospital services or for coordinating the care that the child needed to ensure they received it. By default, the role was left to them as parents. After years of trying to manage and coordinate their child’s care, the parents were exhausted. What do patients and their carers want from coordinated care? HSSIB’s investigation found that patients and carers all knew what they wanted from properly coordinated care. This included having a single point of contact for their child or patient’s health and social care, and meaningful engagement with a care coordinator who has access to all of their patient record (avoiding the need for retelling of their story). This would allow them to spend more quality time with the people they care for and to take breaks between physically demanding caring tasks. It would also reduce their frustration and inspire trust and confidence that their child or patient is receiving the care that they need. Coordinated care for clients with lifelong care needs in medical negligence claims HSSIB’s report shines an important spotlight on the harsh reality of life for many families who are caring for a child with severe neurological disability or a family member with long-term, complex needs for care. In our experience, where the health condition or disability was caused by medical negligence, the assurance of personalised, fully coordinated and managed support with life-long care is the number one reason that we give to families for considering a claim. With liability established and interim funding secured, our client families of children with cerebral palsy or neurodevelopmental disability, or adults with brain injury or spinal cord injury such as CES, have their individual care needs assessed by trusted medical specialists and can start to benefit from properly coordinated therapies and care. The implementation and coordination of their care is overseen by an experienced case manager, who deals with everything from recruitment and management of care staff and handling administration, to organising appointments and liaising with therapists, schools and other organisations, always working closely with the family and our legal, SEN, community care and deputyship teams. If you or a family member have suffered severe injury as a result of medical negligence or have been contacted by HSSIB/MNSI or NHS Resolution you can talk to a solicitor, free and confidentially, for advice about how to respond or make a claim by contacting us.
