About You
What is your name?
Name
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Helen Malo
Organisation details
Name of organisation
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Hospice UK
Your Views
Are there any immediate issues unique to remote and rural communities which the National Centre will need to focus on to improve primary and community care in these areas?
Please use this textbox to provide your answer
The National Centre will need to focus on how to address the growing demand for palliative and end of life care in remote and rural areas, particularly the increasing number of people being cared for and dying at home with more complex needs.
The number of people needing palliative care is rising rapidly and is predicted to increase by 13% in the next ten years. The biggest increase in demand for palliative care will be in people aged over 85. At the same time the care that people need is becoming more complex and a growing number of people are being cared for and are dying at home. The population in rural areas typically have higher proportion of older people, who are more likely to be living with multiple, complex health conditions. For example 25% of the population in remote rural areas of Scotland are over 65, compared with 21% of the population living in accessible rural areas and 18% in the rest of the country. This means that there is likely to be an even higher level of demand for palliative care in these remote and rural communities.
At the same time, access to appropriate health and care services for people with palliative care needs is more difficult in remote and rural areas. Long distances to travel to health care, poor public transport, poor digital connectivity, difficulties accessing medication and out of hours care are all exacerbated when someone is at the end of life.
GPs, community nurses and social care teams provide vital palliative and end of life care but it can be challenging for people in rural communities to access these services, particularly at weekends, evenings and overnight. There are long-standing issues around recruitment and retention. For example NHS Shetland has a GP vacancy rate of 25 per 100,000 population, compared to 3.3 per 100,000 population in NHS Greater Glasgow and Clyde. Social care services are facing challenges around recruiting carers with appropriate expertise, travelling long distances and only having short visits available to care for patients. Access to pharmacies and medication can also be more difficult in rural areas and it can be harder for family members/unpaid carers to access the support they need because of a lack of services or long travel times.
Some people require additional specialist palliative care support. Populations in remote and rural areas can be very dispersed but most hospice and specialist palliative care units are located in or near cities. The centralisation of specialist health services in urban areas disproportionately impacts rural communities and means it is harder for people to access specialist palliative care because of the greater distances to travel. Research has shown that patients living more than 10 minutes from inpatient palliative care services are less likely to die there. The intersection of place and complex need can also impact on access to care. For example, a study on living with motor neurone disease, commissioned by Motor Neurone Disease Scotland found that the concern from some families about distances travelled by specialist nurses meant that the families limited their requests for visits.
Only a third (38%) of hospice and palliative care staff responding to a Hospice UK survey in 2020 thought that people in Scotland can access palliative and end of life care that meets their needs regardless of their geographical location. The survey reported that geographical challenges, particularly relating to remote and rural areas, were identified as the greatest area of unmet need for palliative care in Scotland.
The number of people needing palliative care is rising rapidly and is predicted to increase by 13% in the next ten years. The biggest increase in demand for palliative care will be in people aged over 85. At the same time the care that people need is becoming more complex and a growing number of people are being cared for and are dying at home. The population in rural areas typically have higher proportion of older people, who are more likely to be living with multiple, complex health conditions. For example 25% of the population in remote rural areas of Scotland are over 65, compared with 21% of the population living in accessible rural areas and 18% in the rest of the country. This means that there is likely to be an even higher level of demand for palliative care in these remote and rural communities.
At the same time, access to appropriate health and care services for people with palliative care needs is more difficult in remote and rural areas. Long distances to travel to health care, poor public transport, poor digital connectivity, difficulties accessing medication and out of hours care are all exacerbated when someone is at the end of life.
GPs, community nurses and social care teams provide vital palliative and end of life care but it can be challenging for people in rural communities to access these services, particularly at weekends, evenings and overnight. There are long-standing issues around recruitment and retention. For example NHS Shetland has a GP vacancy rate of 25 per 100,000 population, compared to 3.3 per 100,000 population in NHS Greater Glasgow and Clyde. Social care services are facing challenges around recruiting carers with appropriate expertise, travelling long distances and only having short visits available to care for patients. Access to pharmacies and medication can also be more difficult in rural areas and it can be harder for family members/unpaid carers to access the support they need because of a lack of services or long travel times.
Some people require additional specialist palliative care support. Populations in remote and rural areas can be very dispersed but most hospice and specialist palliative care units are located in or near cities. The centralisation of specialist health services in urban areas disproportionately impacts rural communities and means it is harder for people to access specialist palliative care because of the greater distances to travel. Research has shown that patients living more than 10 minutes from inpatient palliative care services are less likely to die there. The intersection of place and complex need can also impact on access to care. For example, a study on living with motor neurone disease, commissioned by Motor Neurone Disease Scotland found that the concern from some families about distances travelled by specialist nurses meant that the families limited their requests for visits.
Only a third (38%) of hospice and palliative care staff responding to a Hospice UK survey in 2020 thought that people in Scotland can access palliative and end of life care that meets their needs regardless of their geographical location. The survey reported that geographical challenges, particularly relating to remote and rural areas, were identified as the greatest area of unmet need for palliative care in Scotland.
Are there any issues which the National Centre will be unable to address, which may require further policy action from the Government?
Please use this textbox to provide your answer
There are many cross-cutting challenges around poor public transport and infrastructure, digital connectivity, and poor broadband and mobile signal in remote and rural areas which create additional challenges to people trying to access care. These issues need addressing.
The cost of living crisis has had a greater impact on people living in rural communities, with people in rural areas spending more on fuel bills, transport, food and council tax. Properties in rural areas tend to be less energy efficient and have a higher incidence of being off the gas grid, meaning that even before the energy price rise, the average energy cost of households in rural areas is estimated to be 10% higher than in urban areas. Families caring for loved ones at home at the end of life have to keep their home warm, they may need to run essential medical equipment such as ventilators, and other equipment such as hoists and air mattresses, as well as using washing machines and dryers much more frequently, all of which means they are facing much higher energy bills.
There needs to be additional, targeted support around energy costs, and protection of energy supply, for people with a terminal diagnosis and their families. In addition, people need to be able to access home adaptations and suitable accommodation to allow them to stay in their own homes at the end of life if they wish, especially when it is harder for people living rurally to access inpatient care settings such as hospices.
The cost of living crisis has had a greater impact on people living in rural communities, with people in rural areas spending more on fuel bills, transport, food and council tax. Properties in rural areas tend to be less energy efficient and have a higher incidence of being off the gas grid, meaning that even before the energy price rise, the average energy cost of households in rural areas is estimated to be 10% higher than in urban areas. Families caring for loved ones at home at the end of life have to keep their home warm, they may need to run essential medical equipment such as ventilators, and other equipment such as hoists and air mattresses, as well as using washing machines and dryers much more frequently, all of which means they are facing much higher energy bills.
There needs to be additional, targeted support around energy costs, and protection of energy supply, for people with a terminal diagnosis and their families. In addition, people need to be able to access home adaptations and suitable accommodation to allow them to stay in their own homes at the end of life if they wish, especially when it is harder for people living rurally to access inpatient care settings such as hospices.
What would you like to see included in the Scottish Government’s forthcoming Remote and Rural Workforce Strategy?
Please use this textbox to provide your answer
The future remote and rural workforce strategy must consider how to develop a workforce that has the right staff with the right skills and competencies needed to care for the growing number of people with increasingly complex palliative care needs in remote and rural areas.
It must take a whole system approach and consider the health and social care workforce across all sectors, including third sector staff working in hospices, and staff in across all roles, including doctors, nursing staff, social care staff and allied health professionals. It should look at how to develop flexible, multi-disciplinary teams that can work creatively, to best meet the needs of people living in remote and rural areas. This must consider specifically how generalist health and care staff are able to access specialist palliative care expertise in rural areas, particularly out of hours.
The workforce strategy should consider the key role that hospices have in providing education and training, and clinical expertise and support, to the wider health and social care workforce. Highland Hospice, for example, is an ECHO superhub that supports knowledge sharing between professionals from across the health and social care sector in the Highlands and across Scotland .
The workforce strategy should look at the role of digital technology to support the delivery of health and care in remote and rural areas and consider how data and information about people’s care preferences and care plans can be accessed and updated by everyone who needs it.
It must consider how to address the specific needs of the workforce in rural areas, such as lone working, maintaining specialist skills, CPD and clinical supervision.
The workforce strategy must also consider the support that family members/carers need when caring for a loved one at the end of life. With more people being cared for at home, with more complex needs, families are finding themselves taking on more of the burden of care. They need to have the support, skills and confidence to care for their loved ones at the end of life.
It must take a whole system approach and consider the health and social care workforce across all sectors, including third sector staff working in hospices, and staff in across all roles, including doctors, nursing staff, social care staff and allied health professionals. It should look at how to develop flexible, multi-disciplinary teams that can work creatively, to best meet the needs of people living in remote and rural areas. This must consider specifically how generalist health and care staff are able to access specialist palliative care expertise in rural areas, particularly out of hours.
The workforce strategy should consider the key role that hospices have in providing education and training, and clinical expertise and support, to the wider health and social care workforce. Highland Hospice, for example, is an ECHO superhub that supports knowledge sharing between professionals from across the health and social care sector in the Highlands and across Scotland .
The workforce strategy should look at the role of digital technology to support the delivery of health and care in remote and rural areas and consider how data and information about people’s care preferences and care plans can be accessed and updated by everyone who needs it.
It must consider how to address the specific needs of the workforce in rural areas, such as lone working, maintaining specialist skills, CPD and clinical supervision.
The workforce strategy must also consider the support that family members/carers need when caring for a loved one at the end of life. With more people being cared for at home, with more complex needs, families are finding themselves taking on more of the burden of care. They need to have the support, skills and confidence to care for their loved ones at the end of life.
What specific workforce related issues should the strategy look to resolve?
Please use this textbox to provide your answer
The health and care workforce in remote and rural areas face particular challenges around recruitment and retention, ensuring sustainable workforce models and rotas, out of hours cover, lone working and access to ongoing support and skills development.
Recruitment and retention is a big issue. There are high vacancy rates and staffing shortages across Scotland but this has a bigger impact in remote and rural areas where a small number of staff absences can have a real impact on the ability to deliver services. The pressures on community services and lack of availability of social care support to people at the end of life is a particular challenge.
Training, career development and succession planning are important, especially for the rural workforce. One person retiring can have a big impact when that person was providing specialist clinical support for palliative care across a large geographic region. There are specific issues around this relating to the specialist palliative care workforce, including in children’s palliative care.
Recruitment and retention is a big issue. There are high vacancy rates and staffing shortages across Scotland but this has a bigger impact in remote and rural areas where a small number of staff absences can have a real impact on the ability to deliver services. The pressures on community services and lack of availability of social care support to people at the end of life is a particular challenge.
Training, career development and succession planning are important, especially for the rural workforce. One person retiring can have a big impact when that person was providing specialist clinical support for palliative care across a large geographic region. There are specific issues around this relating to the specialist palliative care workforce, including in children’s palliative care.
Are there any workforce-related issues which the creation of a Remote and Rural Workforce Strategy alone will not address. If so, what are these issues and what additional action may be required to address them?
If you answered Yes, please use this textbox to provide further detail
The charitable hospice sector needs to be fully considered in all national and local workforce planning. Hospices provide vital support to GPs, district nurses, care homes, hospital teams and social care, through training and education, specialist clinical expertise and strategic leadership.
Hospices receive only a third of their income from statutory funding and are reliant on the generosity of local communities to fundraise the rest. Over 70% of hospice expenditure is spent on staff, and staffing costs have been rising at significantly over the rate of inflation over the last decade.
To attract and retain skilled and experienced staff, charitable hospices need to ensure their salaries are competitive to those offered by the NHS. The impact of matching the NHS pay award on hospices’ wage bill is approximately £15.5m over 2022-23 and 2023-24. The hospice sector’s call for urgent support from Scottish Government was rejected and local statutory funding has not kept up with the significant cost increases facing hospices. This means the hospice sector has now been left with a significant deficit budget as a result of the NHS pay award.
The year-on-year impact of rising staffing and running costs is cumulative and unsustainable. Without action, hospices will be forced to make tough decisions about how they can continue their services in the future. This will impact patients and families and have a knock on effect to an already overstretched NHS.
A new national funding framework for hospice care is urgently needed to reduce inequity for patients and families, and provide security for hospices to develop their services to meet the growing demand for palliative care. This would give hospices more security to develop their services to better reach people in their communities who live in remote and rural areas.
Hospices receive only a third of their income from statutory funding and are reliant on the generosity of local communities to fundraise the rest. Over 70% of hospice expenditure is spent on staff, and staffing costs have been rising at significantly over the rate of inflation over the last decade.
To attract and retain skilled and experienced staff, charitable hospices need to ensure their salaries are competitive to those offered by the NHS. The impact of matching the NHS pay award on hospices’ wage bill is approximately £15.5m over 2022-23 and 2023-24. The hospice sector’s call for urgent support from Scottish Government was rejected and local statutory funding has not kept up with the significant cost increases facing hospices. This means the hospice sector has now been left with a significant deficit budget as a result of the NHS pay award.
The year-on-year impact of rising staffing and running costs is cumulative and unsustainable. Without action, hospices will be forced to make tough decisions about how they can continue their services in the future. This will impact patients and families and have a knock on effect to an already overstretched NHS.
A new national funding framework for hospice care is urgently needed to reduce inequity for patients and families, and provide security for hospices to develop their services to meet the growing demand for palliative care. This would give hospices more security to develop their services to better reach people in their communities who live in remote and rural areas.