Written evidence submitted by Marie Curie (RTR0129)

Summary

• Effective recruitment, training and retention of the health and social care workforce will be vital for addressing the current gap between supply and demand in palliative and end of life care provision. As a result of the UK’s ageing population, the number of people dying with a need for palliative care is projected to increase by up to 42% by 2040.
   
• The current palliative and end of life care (PEOLC) workforce will need to expand significantly to meet this increased level of demand. Experience during the Covid-19 pandemic has shown that increased mortality rates result in increased demand for both specialist and generalist staff with training, skills and experience in palliative and end of life care.
   
• The palliative and end of life care sector faces particular workforce challenges due to the workforce’s daily experience of caring for people experiencing dying, death and bereavement. Remuneration, working conditions, contract agreements and opportunities for learning and development must be improved to support greater workforce retention in the face of these challenges. This will involve ensuring competitive pay in the sector, and the wider care sector, compared to that of less emotionally demanding jobs in other sectors, such as hospitality.
   
• The main providers of specialist palliative and end of life care are charitable hospices.  Workforce planning models currently underestimate the future extent of palliative and end of life care workforce demand. Modelling must include the statutory and voluntary sector health and social care workforce in order to give a comprehensive understanding of future need.
   
• New models of care will need to be developed, and these will bring new and different challenges around workforce supply. The Covid-19 pandemic demonstrated what death and dying will look like in the future, with increased mortality rates and more people dying at home, a trend which was sustained outside of pandemic peaks. As a result, specialist palliative care teams in all settings increased activity and were stretched to and beyond capacity. These teams dedicated significant resources to supporting, educating and upskilling other health and social care professionals, such as primary care teams, who managed both increased volume and increased complexity of palliative and end of life care during the pandemic.
   
• If everybody who needs it is to receive care from specialist palliative teams in future, a significant increase in the training of specialist palliative care nurses and physicians will be needed immediately. This will require a radically different workforce skills-mix in future, and the transition will need to be properly funded with training budgets accessible to all sectors involved in the provision of care.
   
• Every health and social care worker is likely to be involved in caring for people experiencing dying, death or bereavement at some point in their career, but palliative and end of life care training is not currently a compulsory part of either initial training or continuing professional development for most workers. Barriers also exist for workers seeking to work flexibly across different specialisms, which must be addressed to ensure the entire health and social care workforce are able to provide palliative and end of life care.

• Marie Curie recommends:

-          The implementation of a long-term funding settlement to enable the palliative and end of life care sector to attract and retain a workforce sufficient to enable palliative care provision and ensure that no-one misses out on the care and support they need.
 

-          The inclusion of the voluntary sector in health and social care workforce planning because the charitable sector is the largest provider of specialist palliative and end of life care.
 

-          The introduction of palliative and end of life care training as a compulsory part of initial training and continuing professional development for all health and social care workers, not just those in regulated professions, for example through inclusion on the General Practitioner and Nursing curriculums.

-          Working in partnership with all providers involved in health and social care services for a local population, in order to find solutions to large skill gaps and give equal access to training and development funding regardless of the type of provider.
 

-          The Health and Care Bill should be amended to introduce a statutory duty for a more regular, long-term and independent assessment of health and social care workforce demand projections, and a requirement on Government to respond to that assessment with a full costed plan for how these workforce needs will be met over the next 15 years.

Key Definitions

• Palliative and end of life care is treatment, care and support for people with a terminal illness as well as their families, friends and carers. This aims to identify and relieve the symptoms and concerns that people living with a terminal illness experience, whether that be physical experiences such as breathlessness or pain, or emotional, social and practical concerns.
   
• Specialist palliative care workers operate in multidisciplinary teams where palliative care is the main focus of their role. Specialist palliative care teams work across the community, acute hospital and hospice settings. As well as providing direct hands-on care to people living with a terminal illness and their families and carers, specialist palliative care teams have an important role in indirect care through providing education and training to health and care professionals.
   

• Generalist palliative and end of life care is provided by a much broader workforce that includes a diverse range of health and care professionals both inside and outside the NHS, including clinicians, allied health professionals, general practitioners and community nurses, palliative care social workers and home care workers. As a result, every health and care professional is likely to support someone through dying, death and bereavement as part of their role.

1. What are the main steps that must be taken to recruit the extra staff that are needed across the health and social care sectors in the short, medium and long-term?

• What is the best way to ensure that current plans for recruitment, training and retention are able to adapt as models for providing future care change?
   

Remuneration and pay structures

1. As the main employer of specialist palliative and end of life care (PEOLC) workers, the charitable hospice sector must have a sustainable funding model in order to address the issue of competitive remuneration and parity with other health and social care settings. The cost of providing palliative and end of life care to people in the UK is currently approaching £1 billion each year, and charitable hospices are the main providers of this care[1]. Charitable hospices receive around only around one third of their funding from the NHS and other statutory sources, and raise the remaining two thirds from charitable fundraising and other activities such as charity shops.[2]
    
2. This significantly impacts the charitable sector’s ability to offer pay and conditions which are competitive both with other providers within the health and social care sector, as well as with other sectors. A long-term funding solution for the palliative care sector is needed to ensure that the workforce is supported to provide end of life care as a basic right to anyone who needs it, ensuring it can respond to inequalities in provision, break down barriers to care for those who are currently least well served, respond to people’s preferences at the end of life and help enable these preferences to be met.
    
3. The pay and conditions of employment for Health Care Assistants (HCAs) and nurses will need to keep pace with increases in the cost of living and other inflationary pressures. Pay and conditions, as well as pay increases, must also be competitive in comparison to roles in other sectors with similar remuneration (such as the hospitality sector) as staff retention will suffer if workers can earn a similar or larger salary elsewhere, in less emotionally demanding environments.
    
4. It is vital that the health and social care sector commits to continue to review pay structures that distinguish health and social care as a career choice and not just a ‘vocation’. This includes increasing public awareness of the social care sector as a meaningful career choice within school career options, and commitment to career development opportunities that support staff retention within the sector.
    
5. Recommendation: the implementation of a long-term funding settlement to enable the palliative and end of life care sector to attract and retain a workforce sufficient to enable palliative care provision, and ensure that no-one misses out on the care and support they need.

Modelling and workforce planning

6. Health and social care workforce planning models currently underestimate the sector’s future workforce requirements. As a result of the UK’s ageing population, the number of people dying with a need for palliative care is projected to increase by up to 42% by 2040[3]. Given the importance of charitable providers in delivering palliative and end of life care, workforce planning models must ensure that they include the voluntary sector health and social care workforce (plus additional modelling for private sector settings).
    
7. New models of care will need to be developed to reflect future health and social care needs, and these will bring new and different challenges around workforce supply. If everybody who needs it is to receive palliative care from specialist teams, a significant increase in the training of specialist nurses and physicians will be needed immediately. Generalists such as GPs and district nurses will likely need to continue playing a major role in providing palliative and end of life care, especially in community settings, with support from specialist teams for patients with more complex needs[4].
    
8. Specialist palliative care services still predominantly treat patients with cancer, and the demand for palliative treatment of cancer patients is likely to remain significant given the high prevalence of pain and other symptoms experienced by people with advanced cancers. However, the growing number of deaths from dementia, which is now the leading cause of death in the UK, and other non-cancer conditions, means that an increase in both specialist and generalist health and social care support for people with dementia and other non-cancer conditions will also be required.
    
9. The Covid-19 pandemic has shown that increased mortality rates result in increased demand for both specialist and generalist staff with training, skills and experience in palliative and end of life care. If everybody who needs palliative care is to receive it from specialist palliative care teams in future, a significant increase in the training of specialist palliative care nurses and physicians will be needed immediately.
    
10. This will require a radically different workforce skill-mix in future, and the transition towards this new skill-mix will need to be properly funded with training budgets accessible to all sectors involved in the provision of care.
     
11. Blended staffing models with increased opportunities for advanced practice for Allied Health Professionals (AHPs) and Registered Nurses (RNs) blended with the medical workforce will be needed in future, with changing workforce needs over time properly mapped and evaluated, accounting for the different health and social care needs of urban and rural populations.
     
12. Recommendation: Health and social care workforce planning must include the voluntary sector. The charitable sector is the largest provider of specialist palliative and end of life care within the UK therefore it is essential that the voluntary sector is accounted for in this capacity.
     

Education/skills

13. Workforce standards, mandatory qualifications and training for all levels of practice need to work across the health and social care sectors, with further and higher education settings supporting integrated care systems in a capability-driven, outcome linked way.
     
14. Further education and higher education departments providing health and social care qualifications could be incentivised to contract with providers, so trainees are supported into jobs and encouraged to make a long-term contribution to health and social care sector as they exit from training.
     
15. Opportunities for apprenticeships and trained volunteers to support the work of qualified and registered professionals should also be provided, with increased entry opportunities into support roles.

Integration in the Health and Social Care Sectors

16. In the social care sector, the prevalence of private sector providers means that social care staff often do not have access to the same level of pay, conditions and career progression opportunities as other health care staff. Greater integration between health and social care will be supported by ensuring greater parity of remuneration and workforce training between the health and social care workforces, at a level that meets the required regulatory standards in community and home settings. A review that promotes fairness between the health and social care sector is needed, in the first instance.
     
17. At present, service models within the health and social care sector are developed with emphasis on keeping people out of hospital where appropriate, and this therefore means that the workforce in community settings needs to have the right level of knowledge, skills and capability to manage the care of patients outside of hospital. This means service and workforce models must be more integrated and better promote working in partnership, for example through ensuring generalist staff in community settings are supported by specialist palliative care workers. This could mean moving previously hospital-based roles into the community (such as palliative care consultants and specialist nurses) or having them work across both hospital and community settings.
     
18. Workforce planning must support emerging new service models which should be designed around patient and population need, as opposed what has traditionally been a number of doctors, nurses, Assistant Healthcare Providers, pharmacists planned in isolation. This approach has resulted in a siloed workforce without the capability to move into new service models that better meet the need of patients and populations.

2. What is the correct balance between domestic and international recruitment of health and social care workers in the short, medium and long term?

• What can the Government do to make it easier for staff to be recruited from countries from which it is ethically acceptable to recruit, with trusted training programmes?
   

19. It is extremely challenging to estimate the correct balance between domestic and international health and social care workers without detailed demand modelling. This modelling would need to be dynamically flexible to enable it to be tailored to regional labour markets and regional demand.
     
20. Exchange programmes could be more formally developed so that health professionals from other countries could be on formal exchange in the UK for a rotational period of two years before returning to their country of origin. This would support wider opportunities and a faster route to international recruitment without depleting the workforce in other countries where there is less incentive for people to gain experience than in the UK or other countries where health care systems are better developed. This approach would need to be based on co-operation and agreements between countries. The longer-term aim must be to train enough people in the UK to serve the needs of the population as far as possible.

3. What changes could be made to the initial and ongoing training of staff in the health and social care sectors in order to help increase the number of staff working in these sectors? In particular:
    

• To what extent is there an adequate system for determining how many doctors, nurses and allied health professionals should be trained to meet long-term need?
   

21. The current system of determining the long-term demand for workforce training is not holistic and does not include social care, voluntary sector and private sector workforce demands. It generally underestimates workforce demand and supply, and tends to be separated by profession as opposed to being skill-set orientated.
     
22. A more systematic and integrated approach is needed to ensure an adequate supply of health and care workers skilled in palliative and end of life care (PEOLC) in all settings over the next 15 years. Clause 33 of the Health and Care Bill, currently before Parliament, places a duty on the Secretary of State to publish, at least once every five years, a report on the system in place for assessing and meeting workforce needs in both the health and social care sector. This is insufficient to meet the challenges faced by the palliative and end of life care sector. More regular, long-term and independent assessments of health and social care workforce projections, and a requirement on Government to respond to that assessment with a full costed plan for how these workforce needs will be met over the next 15 years, will be needed.
     
23. More incentives are also needed to retain staff for longer in clinical practice. For example, more flexible working patterns and contracts to this effect would help facilitate a working environment more conducive to the older working age workforce currently in the palliative and end of life care sector.
     
24. Recommendation: The Health and Care Bill should be amended to introduce a statutory duty for a more regular, long-term and independent assessment of health and social care workforce projections, and a requirement on Government to respond to that assessment with a full costed plan for how these workforce needs will be met over the next 15 years.
     

• Do the curriculums for training doctors, nurses, and allied health professionals need updating to ensure that staff have the right mix of skills?

25. Experience during the Covid-19 pandemic has shown that increased mortality rates result in increased demand for both specialist and generalist workers with training, skills and experience in palliative and end of life care. The Covid-19 pandemic has demonstrated what death and dying will look like in the future, with increased mortality rates and more people dying at home, a trend which was sustained outside of pandemic peaks. As a result, specialist palliative care teams in all settings reported increased activity and were often stretched to and beyond capacity. These teams dedicated significant resources to supporting, educating and upskilling other health and social care professionals, such as primary care teams, who managed both increased volume and increased complexity of palliative and end of life care during the pandemic.[5]
     
26. If everybody who needs palliative care is to receive it from specialist palliative care teams in future, a significant increase in the training of specialist palliative care nurses and physicians will be needed immediately. This will require a radically different workforce skill-mix in future, and the transition to this skill-mix will need to be properly funded with training budgets accessible to all sectors involved in the provision of care.
     
27. Current recommendations for the number of palliative medicine specialists equate to only 0.8 workers (FTE) per population of 100,000 people in the UK, compared to 2.2 workers in Ireland and 1.5 in Australia. Recent changes to the GP contract have made it harder for GPs to develop a specialism in palliative and end of life care, yet they and district nurses are having to deliver more palliative and end of life care in the community. The nursing workforce is also facing significant challenges around recruitment and retention.[6]
     
28. Every health and social care worker is likely to be involved in caring for people experiencing dying, death or bereavement at some point in their career, but palliative and end of life care training is not currently a compulsory part of either initial training or continuing professional development for most workers. Barriers also exist for workers seeking to work flexibly across different settings, such as inconsistent requirements in areas such as safeguarding.
     
29. Curriculums for training health care staff need updating to ensure staff have the right mix of skills. Curriculums should be more blended and support the breaking down of silos between professions, with more opportunities to work across settings in order to ensure that workforces are able to meet the needs of their population.
     
30. Curriculums need to be updated to reflect culturally appropriate health and social care. Research by Marie Curie[7] and others indicates that certain groups face significant barriers in access to palliative and end of life care including people who are living in poverty, alone, or with dementia – as well as people with learning disabilities[8], those who are homeless, poorly housed[9]  or in prison[10], BAME groups[11]  including Gypsies and Travellers[12], and LGBTQ+ people[13]. By integrating cultural awareness into training, the health and social care workforce will be more equipped to provide culturally appropriate care.
     
31. Recommendation: We recommend the introduction of palliative and end of life care training as a compulsory part of initial training and continuing professional development for all health and social care workers, not just those in regulated professions, for example through inclusion on the General Practitioner and Nursing curriculums.
     

• Could the training period for doctors be reduced?

32. Instead of training period reduction, focusing on expanding the role of generalists and reducing the number of specialisms and sub-specialisms would be more impactful. This would help to focus on what is needed to deliver most care provided in the community, with less emphasis on hospital-based care which is expensive and often not the most appropriate place for people to be cared for.

4. What are the principal factors driving staff to leave the health and social care sectors and what could be done to address them?
    

33. Caring for people experiencing dying, death and bereavement can be distressing and very challenging for staff. The traumatic nature of death and dying tests staff’s resilience, and to provide palliative care full time requires support from employers and professions. An increasing demand for palliative care, that has not been met by sufficient increases in palliative and end of life care (PEOLC)-trained staff, has increased this impact on the workforce. Our survey in conjunction The Association for Palliative Medicine (APM) of palliative care specialists across the UK and Ireland in December 2021 and Early January 2022 found that only 19% of practitioners felt there had been sufficient capacity overall to deliver high-quality specialist palliative and end of life care in their locality in the last year. Two thirds of practitioners (66%) felt there had not been sufficient capacity overall to deliver this.[14]
     
34. End of life care can also involve working in a range of settings, from individual homes to hospital wards, which is also very demanding for staff. This pressure has only been exacerbated further by the pandemic, with both increased workload and the emotional toll of witnessing the deaths of increased numbers of patients, as well as many staff experiencing bereavement themselves. Staff require additional support for their emotional and physical health in such a demanding field. This must involve a proactive approach to staff wellbeing, and should include fast-track access to mental health support.
     
35. In addition to staffing demands caused by the pandemic, there are well known seasonal staffing pressures in both the health and social care sectors. Proactive recruitment initiatives to address these peaks must be planned.
     
36. Gaps in the social care workforce are already significant and are widening, with increased demand for services during the pandemic. In 2019/20, the estimated staff turnover rate in the adult social care sector was 30.4%, equivalent to approximately 430,000 leavers over the year. It is estimated that 7.3% of the roles in adult social care were vacant, equal to approximately 112,000 vacancies at any one time. Around a quarter of the workforce (24%) and almost half (42%) of the domiciliary care workforce were on zero-hours contracts.[15] This can be attributed to the lack of career progression and poor remuneration within the social care sector.
     
37. Alongside turnover and workers leaving the sector, research carried out by the Association for Palliative Medicine found that over 75% of the palliative care workforce were aged 40 or over. The ‘mean intended age of retirement’ for palliative care consultants is 61.2 years, and data indicates that over the next 10 years approximately 207 consultants in palliative medicine, representing 33% of the workforce, are likely to retire and exit the workforce.[16] More creative contracts including part-time and flexi working arrangements would benefit older staff, help to create a more favourable work life balance and family-friendly sector. Urgent consideration must also be given to how the sector can attract more professionals earlier in their career to replace those who will be retiring over the next decade.

5. Are there specific roles, and/or geographical locations, where recruitment and retention are a particular problem and what could be done to address this?
    

38. Access to palliative and end of life care in rural areas is often particularly challenging due to people living a significant distance away from services and difficulties faced by community service providers often travelling significant distances in order to provide care to people[17].
     
39. The workforce supplying this care in rural areas must be flexible to the needs of the local population, which presents unique challenges as properties are often further away and can take longer to travel to.
     
40. Efforts to improve recruitment must be increased in rural areas, as well as concentrating on creating competitive pay, terms and conditions for existing staff to improve staff retention.

6. To what extent are the contractual and employment models used in the health and social care sectors fit for the purpose of attracting, training, and retaining the right numbers of staff with the right skills?
    

41. Contractual and employment models will need to be more creative and support innovative approaches, with less reliance on siloed specialisms and more emphasis on widening the skill-mix of generalists, as well as expanding the remit of generalists. In palliative care, specialist practitioners should work predominantly in community settings, within reach of hospital settings to be able to support generalist staff.
     
42. Contractual and employment models in the sector are too rigid, with a continuing focus on organisation fixed contracts which are often too inflexible to address local workforce needs, rather than place-based, skills-based or partnership-led contracts.

7. What is the role of integrated care systems in ensuring that local health and care organisations attract and retain staff with the right mix of skills?
    

43. Most specialist palliative and end of life care services are provided by the charitable hospice sector.  Workforce planning should be inclusive of all providers involved in health and care services for the population served. Working together with providers in areas with large skills gaps is vital to find solutions and give equal access to training and development funding, regardless of provider. Lead-providers could be incentivised to involve others and ensure the skill-mix and staffing levels are available across the sectors.
     
44. Integrated Care Systems (ICSs) have a commissioning responsibility and therefore can use the NHS standard contract to manage this. Commissioners can engage with providers to review strategy, planning and evidence, and similarly decommission services that do not have safe levels of staffing if possible. They have a responsibility to feedback to NHSE on workforce issues if necessary.
     
45. It is vital that the needs of the local population are considered in workforce skills planning. This means adapting swiftly to local need and having shared contracts to enable place based teams to work together more effectively, recognising the contribution that is made by all and utilising the skills available accordingly.

For more information please contact:

Becca Hammond

Policy and Public Affairs Officer, England

Jan 2022