Government is falling short on its commitments to the rare disease community – new report

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Rare disease community

A new report from Public Policy Projects (PPP) has found that standards of care for those living with rare diseases in the UK fall below government commitments set out in its England Rare Diseases Action Plan 2022.


  • New report calls for the government to do more to rebalance equity of care for the rare disease community  
  • The UK currently falls outside of the top 20 European countries by number of conditions for which it screens, with the heel prick test only screening for nine conditions  
  • Report is the culmination of over 10 hours of discussion between February and May 2022, among more than 60 participants, and case study submissions  

A new report from Public Policy Projects (PPP) has found that standards of care for those living with rare diseases in the UK fall below government commitments set out in its England Rare Diseases Action Plan 2022. The report also finds that, despite recent progress in developing rare disease frameworks and Action Plans, the UK is falling behind other comparable countries in the diagnosis and treatment of rare diseases.   

The report, A Fairer Future, does acknowledge recent government commitment to deepen understanding of specific conditions and increase the development of treatment and drugs. These commitments include increased funding into Genomics England’s Newborn Genomes Programme and the creation of the NHS Genomics Service.  

A Fairer Future also calls for greater attention to be given to rare diseases with non-genetic causes. While recent funding increases for genomics research is welcome, a too narrow focus on genetically caused rare disease will fail to address wider population needs on rare diseases, resulting in a standard of care below government ambitions.  

The report argues that policy must reflect the needs of all those who live with rare diseases and conditions, noting that the size of the UK’s rare disease community would collectively amount to the second most populous city in the UK. Also among the report’s recommendations are calls to widen the availability of Whole Genome Sequencing, to expand the number of conditions which are screened for, and to increase awareness among the healthcare workforce and public of the Genomic Medicine Service.   

Recommendations include:   

  1. As the Genomic Medicine Service is rolled out it is essential that healthcare professionals, including the anti-natal and neo-natal workforce, be informed on the impact this may have on newborn babies and those exhibiting symptoms. This is to ensure expecting mothers and new parents, are provided with appropriate time to familiarise themselves with the service and potential options available to them.   
  2. The list of conditions currently screened for, using the heel-prick test, should be expanded by the National Screening Committee to include those such as Spinal Muscular Atrophy (SMA) Type 1, for which a gene therapy exists. This should occur in addition to the ongoing Newborn Screening Programme. It should be a commitment that this aim be met before the completion of the Newborn Screening Programme, run by Genomics England (GEL), in 2025.   
  3. Whole Genome Sequencing (WGS) in newborns may result in a potential 3000 more patients entering the healthcare system every year. It is essential that in ongoing consultations the system be prepared to absorb those diagnosed. The implications upon clinical services to respond and develop timely care plans must be considered, to ensure newly diagnosed patients and families to not end up on disproportionally long waiting lists.  
  4. To harness widespread engagement and raise awareness of rare diseases beyond the healthcare ecosystem, the conversation must be rephrased. A collaborative and cross-sectoral recasting of public perception and understanding through the lens of ‘population health impact and intervention’, should work towards harnessing an understanding of the health impacts of rare diseases beyond those directly affected.  
  5. Universities, Royal Colleges, Health Education England, and other professional bodies and academic institutions should promote the upskilling and further education of their students and healthcare professionals. It is also essential that these be completed by key decisionmakers within the health service, for example those allocating resource for commissioning services, to ensure impact is felt across the health ecosystem. These may be delivered through virtual and in-person workshops.  
  6. Living with a rare disease places substantial strain on mental health. In anticipation of the reforming of the Mental Health Act, a focus on effectively integrating mental health services and support into rare disease services is essential. Not only for the individual living with the rare disease or condition, but for their family and carers as well.  
  7. Whole Genome Sequencing (WGS) in newborns may result in a potential 3000 more patients entering the healthcare system every year. It is essential that in ongoing consultations the system be prepared to absorb those diagnosed. The implications upon clinical services to respond and develop timely care plans must be considered, to ensure newly diagnosed patients and families to not end up on disproportionally long waiting lists.  
  8. Universities, Royal Colleges, Health Education England, and other professional bodies and academic institutions should promote the upskilling and further education of their students and healthcare professionals. It is also essential that these be completed by key decisionmakers within the health service, for example those allocating resource for commissioning services, to ensure impact is felt across the health ecosystem. These may be delivered through virtual and in-person workshops.  
  9. Living with a rare disease places substantial strain on mental health. In anticipation of the reforming of the Mental Health Act, a focus on effectively integrating mental health services and support into rare disease services is essential. Not only for the individual living with the rare disease or condition, but for their family and carers as well.  

   

Dr Shehla Mohammed, Consultant and Paediatric Clinical Geneticist, Guy’s and St Thomas’ NHS Foundation Trust, and Project Co-Chair said: “It has been a privilege to work with and learn from so many colleagues across so many disciplines over the past six months. We thank them for their enthusiastic participation and for their wise and insightful contributions. The report is a unique endeavour to articulate the key role of the patient voice in Rare Diseases. It offers a set of pragmatic and realistic recommendations which come from patients and those caring for them to ensure sharing knowledge and good practice can provide equitable access to diagnosis, management and treatment. We are optimistic that this will enable realisation of the key priorities of the UK Rare Diseases Framework which can meet the needs of those with living with rare diseases and for their families.”   

Alastair Kent OBE, Independent Patient Advocate, and Project Co-Chair said: “Recent scientific progress in our understanding of rare diseases at the molecular level has been unprecedented. Listening to the experiences of patients and families affected by these conditions has been essential., enabling new knowledge to be translated into innovative therapies and improved services and support. Putting patients and families at the heart of this process values their expertise and experience and helps speed progress.  The production of this PPP report has been led by the views of patients and families from the outset, ensuring it is realistic, relevant and robust in the conclusions it draws and the recommendations it puts forward.”   

Daniel Lewi, Business Development – Rare Disease, Cognitant; and, Co-Founder and Chief Executive, CATS Foundation said: “The report has highlighted the fact that education about rare disease should not only focus on the patient and their family, but also include health care professionals. We need to start this process collectively so that we can empower patients to take control of their own health which will ultimately enable them to become their own advocate.”   

Press release

New report calls for country to embrace collaborative primary care at scale

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primary scale at scale

A new report from Public Policy Projects (PPP) and Healthworks has called for the wholesale scaling of the provision of primary care in the UK to drastically improve patient outcomes and system efficiency.


  • The primary care sector should embrace and indeed “celebrate” the mixed economy of health and care
  • Each of the four contractor services of primary care, and their respective local commissioners, must improve understanding of what each other service does
  • Pharmacy sector must be open to a radical change of structure and mindset in order to maximise its huge potential for facilitating integrated care 
  • Local commissioners must generate greater clinical collaboration with the optometry sector, ensuring it becomes a key component of diagnostic and preventative care
  • ‘Build back better’ should be used to increase preventative and restorative dental care; dental contracts must be reformed to help further integrated with PCNs and address chronic unmet need for dental care

The report: Stronger Together: Collaborative Primary Care at Scale, relates to the four contractor services that make up primary care: general practice, community pharmacy, dentistry and optometry. The report advocates a move away from a contractual process-dominated approach to primary care to one defined by quality improvement metrics and population health.

The report also calls for the acknowledgement of the mixed nature of the country’s health economy. Three of the four primary care services, pharmacy, dentistry and optometry, rely heavily on their continued existence on non-NHS contract funding. Indeed, the gap between NHS funding and private-pay work is widening. However, there remains significant distrust and misunderstanding of “profit-driven” healthcare across the public and even amongst the healthcare profession.  

The report calls for the adoption of ‘Primary Care at Scale’ (PCaS), the purpose of which is to extend the provision of health and care services within a community setting through an integrated, team-based approach.  

The report is made up of contributions from thought leaders within the health and care sectors and representatives of the wider communities of primary care providers and professions.  

Professor James Kingsland OBE, Chair of the report, said: “It is relatively uncommon for the collective views of general practice, community pharmacy, dentistry and the optical sector to be expressed in one publication. Stronger Together tackles historically siloed approaches to addressing and reforming primary care, highlighting challenges that are both unique to each contractor service and those that are shared across the sector.” 

Michael Lennox, Member of the National Pharmacy Association and contributor to the report, said: “Primary care at scale is not just possible, but a necessary progression for the sector. We are seeing a reboot of belief for what community pharmacy can bring to the table. 

“In many ways, community pharmacy is already being delivered at scale, with over 10,000 pharmacies across the country – equating to 2 per GP practice. These services are here and they will continue to grow. The main barrier to this collaboration is people – do we trust each other? Do we have the right technology platforms to facilitate cross-discipline working? The Stronger Together report highlights the enormous benefits of generating true collaboration across each of the disciplines of primary care” 

Zoe Richmond, Clinical Director, Local Optometry Support Unit and report contributor, said: “The report highlights that we all have a duty to better understand what each of the four contractor services of primary care do. There is so much to be gained from this enhanced understanding and collaboration.  

“We need to encourage significant behaviour changes if we are to truly optimise primary care. Data sharing and increased digital connectivity has been long overdue for optometry.” 

Professor Paul Batchelor, said “Workforce problems are evident across all primary care contracting groups. What has happened in dentistry is a move away from simply NHS arrangements and the contract for which current NHS dentistry is provided is simply not fit for purpose.  

“If we are to have truly integrated care, then the dentistry sector will need to work much closer with the other contractor services that make up primary care, the sector must adopt at at-scale approach to delivery that is defined with the Stronger Together report.” 

Also commenting on the report, Dr Farzana Hussain said: “Integrating care must start focusing on integrating services, not systems, ensuring that care pathways are integrated. Changing behaviours is more than simply addressing contractual changes in the sector.   

PCNs need to rise above contractual requirements, they need to be about delivery and integrated health. We need to live these aims, not just talk about them.   

“I am very much somebody who believes care should be absolutely free at the point of need. For the first time, I am seeing my patients going towards private providers. Tt might not be sinful to think about increased private funding…if we do not think about this about that then I fear we will lose lives.”  

Read and download the report here.

Key recommendations

The authors’ recommendations are that the four primary care contractors and their commissioners should: 

  • Seek to develop a culture in which co-production of care between four primary care contractors is paramount, working towards helping ensure each sector knows and understands how best it can work to support improved outcomes for patients.
  • Confront the challenges of addressing inequalities through the adoption of population health principles and techniques.
  • Acknowledge that the mixed economy supports the NHS.
  • Adopt a more meaningful mantra than “building back better” – perhaps “achieving fair and sustainable health improvements”.
  • Note the importance of the principle of national consistency in design and delivery of some services, but also that contractors and commissioners work to “acceptable variability”, tailored at local level.

The full recording of the Stronger Together launch event can be viewed below.

 

About Public Policy Projects 

Public Policy Projects is a global, liberal public policy institute. The institute is independent and cross-party, bringing together public and private sector leaders, investors, policymakers and commentators with a common interest in turning public policy into actionable insights. Public Policy Projects does not advocate on behalf of any organisation. 

About Healthworks 

Healthworks works closely with health and care systems to improve effectiveness and efficiency for the benefit of populations. It creates pragmatic and sustainable solutions that address the most challenging problems within the NHS and social care. 

Its thinking is shaped by its people who have unparalleled experience and have walked the NHS and social care walk over many years. Its core purpose is to design, develop and deliver ideas that work. 

It is pre-emptive in its thinking and approach, in the development of powerful ideas that bodies across health and social care are actively investing in. 

In short, Healthworks is about: 

  • Truly innovative ideas 
  • Ideas that are experiential and evidence-based 
  • Ideas that will actively transform 

Media enquires 

For further information, or to request interviews, please contact:  

Press release

New report: The climate crisis and its health impacts

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the climate crisis and its health impacts report cover

World Health Organization (WHO) should declare climate change a public health emergency, says new report by Public Policy Projects, chaired by Seb Dance.


  • WHO should consider revising the narrow disease-specific definition of public health emergency of international concern (PHEIC) to include climate change 
  • UNFCCC’s National Adaptation Plans (NAP) should give a greater focus to health and support national governments with the development of their climate- and health-related plans 
  • Medical schools should include climate change and its corresponding health impacts in the medical curricula

A new report by Public Policy Projects (PPP) has called the World Health Organization (WHO) to declare climate change a public health emergency of international concern (PHEIC). The report, chaired by former Deputy Chair of PPP’s Environment Pillar and currently Deputy Mayor of London Seb Dance and authored by PPP Policy Analyst Francesco Tamilia, showcases the devastating impacts of climate change on people’s health.

According to the WHO, climate change is the single greatest threat to global health in the 21st century. Ahead of COP26, more than 45 million health workers from across the world wrote an open letter to world leaders calling for urgent climate action to protect people’s health. Over 200 health journals worldwide have also urged world leaders to take action to keep global temperature increases below 1.5C and protect health. Climate change also threatens to reverse many of the advances in global health over the past 50 years and further widen existing health inequalities.

The Office for National Statistics (ONS) has also stated that: “Climate change is the greatest long-term health threat globally and is expected to impact the UK increasingly over the coming years. We need to monitor and report those effects to inform the public and policymakers.”

Although the health impacts of climate change are already unfolding across every continent and are causing thousands of deaths every year. PPP’s report, The climate crisis and its health impacts, argues that the relationship between climate change and health is still widely underappreciated by policymakers and the public.

The PPP report also calls for national governments to develop effective strategies, as part of UNFCCC’s National Adaptation Plans (NAP), to identify, address and review the health impacts of climate change in their countries. NAPs should also place a greater focus on health and support national governments with the development of their climate- and health-related plans.

The report not only highlights the intimate link between climate change and human health but also illustrates the actions that can be taken to remedy this health crisis. The Climate Crisis and its Health Impacts outlines a series of solutions that governments and policymakers can implement to mitigate the health consequences of climate change.

Commenting on the report:

Seb Dance, Chair of the report, said: “Every day we take action to mitigate damage to ourselves. We avoid certain foods and limit our intake of harmful substances. We exercise and quit smoking and subscribe to gyms and nutritional programmes where we can to help guide us down a healthier path. But none of us can avoid climate change, much less those with the fewest resources for whom, as with every public health crisis, the options to mitigate are not always readily available. It is time to put a health warning on the biggest global challenge we face: climate change kills.”

Rt Hon Chris Skidmore MP, former Minister of State for Energy and Research Director at PPP said: “National governments must deal with the climate crisis with the same urgency and effectiveness seen during the Covid-19 pandemic. Proactive and effective actions must become the ordinary ones when tackling climate change. By taking actions on climate, such as switching to clean energy, we are also protecting people’s health. Climate change and health are two sides of the same coin.”

Elaine Mulcahy, Director, UK Health Alliance on Climate Change said: “The recent IPCC report warned of the grave threat of climate change to human wellbeing and planetary health. Already, many of the health impacts of climate change are being felt causing thousands of deaths every year with overlapping challenges of increased exposure to heatwaves and heat-related mortality, increased risk of food, water and vector borne diseases, increased mental health challenges, and the devastating consequences of air pollution. We need to move quickly to address these challenges to protect health, while also realising the significant potential health benefits that can be achieved through the actions we take.”

View and download the report here.

Key insights of the report:  

  • WHO should consider revising the narrow disease-specific definition of public health emergency of international concern (PHEIC) to include climate change.
  • National governments should develop effective strategies to identify, address and review the health impacts of climate change in their countries. National Adaptation Plans (NAP) should give a greater focus to health and support national governments with the development of their climate- and health-related plans.
  • Medical schools should include climate change and its corresponding health impacts in the medical curricula. Health professionals including doctors, nurses and midwives should undertake, as part of their studies, modules that explain the various links between climate change and health and its health consequences.
  • Increase the public and policymakers’ understanding of the multiple public health benefits of switching to clean energy, and how this will subsequently improve air quality and ultimately improve health outcomes. Such benefits should be amplified within governments’ strategies on climate change mitigation and adaptation.
  • Governments should carry out cross-sector awareness campaigns on the impacts of the heatwave on human health, targeting policymakers, health professionals and the public. These campaigns should include relevant information depending on the audience.Health professionals need more comprehensive training to help identify heat-related conditions.The public needs to know what steps and measures they can take ahead of a heatwave, so they can better protect themselves during the heatwaves.
  • Policymakers must recognise the urgency of this issue and work towards effective policy changes such as introducing strong early-system warnings. This should include a naming system for heatwaves similar to storms, to raise public awareness of this ‘silent killer’.
  • Public health communities should be incentivised to undergo training in infectious diseases. They should reduce the knowledge gap and promptly identify infectious disease cases and treat them accordingly. As first responders, this is particularly important for those health professionals in geographical areas where experts have predicted an increase in environmental suitability for certain infectious diseases
  • Early-warning systems have proved critical in tackling climate-sensitive infectious diseases. Governments should invest in these technologies and establish support groups that seek to identify emerging diseases.
  • Emerging new studies are drawing a worrying picture on how climate change is impacting people’s mental health. Governments should conduct an in-depth study to reveal the full extent of the problem.
  • Governments should investigate whether health professionals, in particular psychologists and psychotherapists, have the expertise and the means to deal with something on the scale of the climate crisis. Potential future training and continuing professional development will be required within the healthcare system to prepare for climate-related exacerbation of mental health conditions.

To access the video recording of the webinar report launch, click here.

About Public Policy Projects 

Public Policy Projects (PPP) is a global policy institute offering practical analysis and development across sectors, including net-zero and climate change. The institute is independent and cross-party, bringing together public and private sector leaders, investors, policymakers and commentators with a common interest in turning public policy into actionable insights. Public Policy Projects does not advocate on behalf of any organisation.

Media Enquires

For further information, or to request interviews, please contact:  Francesco Tamilia, Policy Analyst and author of the report, Public Policy Projects, francesco.tamilia@publicpolicyprojects.com

Press release

New report: How to re-engage patients with cancer pathways

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Long-term funding plan for workforce and capital investment needed to rapidly scale-up cancer services in response to “calamitous” pandemic impact.


  • Cancer services must be rapidly scaled-up top meet post-Covid surges in referral rates
  • Strategies to transform diagnostic services proposed by Professor Sir Mike Richards must be implemented without delay, with a detailed delivery plan that includes capital investment and workforce funding
  • “Unacceptable” variations in regional performance must be addressed through targeted actions to address inequalities in cancer services currently described as a “postcode lottery”

A new report from Public Policy Projects (PPP) has called upon government and health providers to drastically scale-up and improve cancer services across England. The report comes in response to what it describes as a “calamitous” impact upon UK cancer treatment in the wake of Covid-19.

How to re-engage patients with cancer pathways

The report: How to re-engage patients with cancer pathways

How to re-engage patients with cancer pathways, published on Thursday 27 May in partnership with MSD, outlines a series of recommendations to not only improve oncology services in response to the pandemic, but to address longstanding issues, such as poor waiting times and sub-standard survival rates by international standards.

With cancer rates rising in line with the UK’s ageing population, demand for oncology services is only set to increase in future. The report states that NHS England’s “fine ambition” of diagnosing 75 per cent of cancers by 2028 is not on track to be delivered, with early diagnosis hovering at around 55 per cent for several years.

The reasons for this lack of progress are plentiful. The UK is currently “severely compromised” by a chronic shortage of diagnostic capacity, with much of the current equipment being obsolete. Further, the workforce must be significantly expanded and reshaped to meet current and future demand – the NHS still lacks a robust plan to meet current and future workforce requirements and the government has yet to commit the funds to deliver one.

The report also finds stark variations in regional performance across the country and describes the state of UK cancer care as a “postcode lottery.” Analysis of 2017/18 data by the National Audit Office of the percentage of patients treated within 62 days of a GP referral revealed that the performance of clinical commissioning groups varied from 59 per cent to 93 per cent, against a standard of 85 per cent. The report strongly recommends that integrated care systems (ICSs) be given greater responsibility for cancer services in their area.

The report hails the work of Professor Sir Mike Richards, particularly around his emphasis on moving diagnostic capacity into the community. To this end, PPP recommends the swift implementation of all of Professor Richards recommendations in his recent report.

Pandemic disruption has had a devastating impact upon already stretched cancer services across the UK. Lung cancer screenings effectively came to a halt, urgent referrals in primary care collapsed and, while there has been a significant recovery in urgent referrals, the drop-in service means that 350,000 fewer people have been referred urgently across the UK since the beginning of the pandemic compared with a normal year.

A key recommendation of the report is to ensure the NHS takes steps to restore public confidence on the safety of cancer services by publishing steps to ensure they are Covid-free. Concerns about catching Covid became intertwined with pressure to “protect the NHS” and fear of contracting Covid led many patients to postpone seeking help or to miss appointments. This issue was compounded a lack of trust in Government information, where mixed messages only served to add to the confusion.

In addition to diagnosis, cancer treatment has also been severely disrupted, with delays to surgery exacerbating the problems of late referral and diagnosis – as patients are presenting themselves with more advanced stages of cancer. The pandemic has also led to skyrocketing diagnostic wating times, domestic tests for suspected cancer were 10 times the length in August 2019. The plunge in diagnostic activity has also led to “some cancers progressing to a stage where they were no longer treatable,” the report says.

Marginal gains will not be enough to restore services to pre-pandemic level, the report says that “the aim must be to finally deliver world-class cancer care through service transformation”.

Among a host of key recommendations, the report calls for strengthening of the relationship with key cancer charities, many of which have suffered from heavy funding cuts over the past year, a close examination as to the benefits of remote cancer care, the immediate reopening of cancer treatment trials to deliver potentially lifesaving treatments to patients, and recommends that real-time data be harnessed to revolutionise service.

Commenting on the release of the report, Professor Sir Mike Richards said: “The Covid-19 pandemic has shone a major spotlight on cancer services both highlighting weaknesses in current service provision and demonstrating opportunities for improvement. The PPP report has identified 16 recommendations. It is now vital that we take these forward in order to bring cancer survival in this country up to the best in the world.”

Baroness Nicola Blackwood, Deputy Chair of Healthcare and Life Sciences at PPP, said: “The calamitous impact of the Covid-19 pandemic on UK cancer treatment has again highlighted the urgent need for an overhaul of every aspect of our cancer services. However, these profound impacts are as much a symptom of the underlying weaknesses of cancer care as a measure of the severity of the pandemic.

“We have known for years that our diagnostic equipment is scarce and obsolete, that the cancer workforce is too small to meet even current, let alone future, demand, that there are too few intensive care beds and that people are dying because treatment comes too late.”

David Long, Business Unit Director, Oncology, MSD, said: “The way that the health community has come together to combat the Covid-19 pandemic is tremendous. This was particularly demonstrated in cancer services through efforts to keep patient pathways open and flexible to the evolving situation. It continues to be demonstrated as everyone pulls together to recover those cancer services.

However, it is well recognised that the system was by no means perfect for clinicians or cancer patients before the pandemic. That is why we welcome the opportunity to support this initiative to examine the opportunities to come back from the pandemic with a system that is better than the one that went before it – and to continue the spirit of collaboration that has achieved such significant change in such a short period of time.”

View and download the report here.

Notes to editors

Recovery and transformation

The report makes several recommendations to restore and indeed improve UK cancer services:

  1. A long-term funding plan for capital investment and workforce for next CSR to facilitate major scale up of UK cancer service capacity.
  2. Strategy to transform diagnostic services proposed by Professor Sir Mike Richards must be implemented as quickly as possible.
  3. Unacceptable variations ion regional performance must be addressed through targeted measures and ICSs need clear responsibility for driving service improvements.
  4. Cancer services must be delivered at Covid safe hubs and public confidence should be restored in cancer service safety.
  5. The NHS needs to routinely collect cancer data based on deprivation and ethnicity.
  6. Care for people with incurable cancer must be improved.
  7. Cancer screening must be restored and expanded.
  8. Involvement of cancer charities must be maintained and strengthened.
  9. New pathways adopted during the pandemic should be adopted permanently where appropriate.
  10. Benefits of remote cancer services must be evaluated.
  11. The NHS must increase capacity for harnessing real-time data on cancer, so that data can be acted upon promptly.
  12. Cancer treatment trials must be fully reopening and expanded.
Press release

New report: Practical care for effective integrated care systems

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The Health and Care Bill must clarify its position on the statutory basis of the ICS Health and Care Partnership Board.


  • Joint working between the NHS and local government must reflect a genuine partnership of equals.
  • Those working in the social care sector need to be awarded with status and pay to match that of their NHS colleagues.
  • Report launched by Rt Hon Stephen Dorrell, former Secretary of State for Health, Phil Hope, former Minister of State for Care Services and other senior thought leaders including Patricia Hewitt, Independent Chair of Norfolk and Waveney ICS

 

As Parliament debates the Health and Care Bill, a new report from Public Policy Projects (PPP) has called upon Government to place the voice of local government and social care on an equal footing to the NHS. The report comes in response to the Government’s Integration and Innovation white paper and sets out a blueprint for how integrated care reform can be delivered in practice.

Effective integrated care systems

Practical action for effective integrated care systems, published on 13th July in partnership with DevoConnect, outlines a series of recommendations to achieve parity between local government and the NHS and address social care with the same vigour as acute care.

The report, co-chaired by Rt Hon Stephen Dorrell, former Secretary of State for Health and Phil Hope, former Minister of State for Care Services, consulted with a range of key stakeholders in Integrated Care Systems (ICSs), local government, public services and across political parties. Two key findings emerged from these evidence sessions: the white paper does not sufficiently prioritise the local government voice and fails to achieve parity of esteem between the NHS and social care.

The report welcomes the commitment of NHS leadership to ensure that NHS services are joined up with other local services. However, there are strong cultural and institutional constraints to this potentially transformational development, the report warns, which needs to be addressed in a sustain way.

It is regretteble that the current draft of the legislation does not provide a statutory basis for the ICS Partnership Board. The former Secretary of State for Health stated that his objective was to strengthen national political control of NHS services. The report recommends that his successor amends the health and care bill to provide a statutory basis for the Health and Care Partnership Board and a statutory framework for partnership budgets which addresses the priorities agreed by the Partnership Board.

The Covid-19 pandemic has raise dramatically the status and value of social care in the public eye. The report recommends that the bill is amended to provide a new framework for social care which includes a commitment to increase funding for social care and arrangements for a Social Care People Plan to match the NHS People Plan.

 

The report identifies a series of key recommendations:

  • The decisions of the ICS NHS Board should be compliant with the aims and priorities of the ICS partnership board. Further guidance should be produced on how the ICS NHS board should have due regard to the ICS health and care partnership board health and wellbeing plan, and there should be a statutory duty on the NHS and local government to collaborate.
  • The ICS partnership board should be placed on a statutory footing with a duty to plan and deliver a comprehensive health and wellbeing strategy, built on local place-based strategies, to improve population health and reduce health inequalities within its health geography.
  • Action by the Government to support parity of esteem between health and social care in general, and parity of earnings in particular, is essential for ICSs to plan and manage their ICS workforce based on the requirements of the local population’s health, social care and public health needs.
  • A key step towards integration of the planning and management of local health and social care workforces by ICSs is for the Government to publish a social care people plan that mirrors the NHS People Plan. A further step would be to merge these into a single health and social care people plan to underpin local plans developed by ICSs.

Phil Hope, co-chair of the PPP report, said: “The Health and Care Bill presented to Parliament for debate provides a unique opportunity to build back a fairer health and social care system after the pandemic. But the legislation must create a genuine partnership of equals between the NHS and Local Government to deliver better health and social care services, and reduce health inequalities within our communities.

Failure to do so could lead to a more centralised NHS focused yet again on acute care in hospitals rather than on building local integrated systems which provide better care closer to home and tackle the causes of ill-health in the population.

Our report makes 31 recommendations for developing effective integrated care systems concerning their governance, collaborative working between service providers, system performance and incentives, funding flows, the workforce, digital health and the public estate. Some of these concern changes to the Bill whilst others are suggestions for good practice that every integrated care system could consider in this vital year of their development.

And it will be essential that proposals to reform and fully fund our social care services are brought forward without delay. Those who need social care, and those who provide it, deserve a fair deal and parity of esteem with our health services if we are to create an integrated health and social care system we can all be proud of.”

Commenting on the release of the report, Naomi Eisenstadt, Independent Chair of Northamptonshire ICS said: “The Government’s plans for integrating health and social care are ambitious and should be welcomed. Achieving the core aims of improving health and reducing inequalities in health outcomes is challenging. Making progress will be much more likely if the recommendations in this report are implemented. I am convinced we can improve health by public bodies and the voluntary and independent sector all working together. This wise report should help us in that task.”

Patricia Hewitt, Independent Chair of Norfolk and Waveney ICS said: “With the NHS Bill published last week, this timely report will make a valuable contribution to the debate about how each ICS should take advantage of the great opportunities presented by becoming a statutory system from April 2022.”

Also commenting on the release of the report, Matthew Stickland, Director of Strategy and Communications at TPP said: “Integrated Care Systems have the ability to enable cross-organisation working and new forms of collaboration between the NHS, local governments, and the third sector. This report highlights a number of key practical considerations to help achieve genuinely integrated care across a region.

From a digital health perspective, the recommendations outline the importance of clear digital leadership on the ICS board. In my view, careful consideration is needed when it comes to ICS board representation, in order to move toward a collective responsibility for digital maturity across the whole system.

It is widely recognised that technology can play an important role in facilitating integrated care, providing a better experience for patients, improving outcomes, and supporting the workforce. We need digital systems that genuinely assist staff and facilitate high quality care across an entire ICS. These systems need to interoperate, so that vital data is always available at the point of care. They also need to support data flows for population health and for improved planning. Any systems deployed must be cost effective and leave enough room in the IT budget for investment in people. This is key to ensuring the success of ICSs.”

This programme of work has been written in partnership with DevoConnect. Sponsorship for this report has provided by TPP and Cerner. Public Policy Projects have retained full editorial control.

View and download the report here.

Press release

PPP report proposes ‘Personal Asset Protection guarantee’ to fix social care crisis

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Personal asset protection

LONDON, July 19, 2021 – Public Policy Projects (PPP), the global policy institute, has today published a report that unveils realistic and transformative solutions in four key areas of social care policy: integration, innovation, infrastructure, and funding.


PPP report proposes ‘Personal Asset Protection guarantee’ to fix social care crisis

 

  • Puts forward recommendations for a nationally funded, but locally delivered model as an alternative to national Dilnot proposals or local council tax
  • Damian Green MP welcomes the conclusions

 

A succession of Governments have promised reform over the past 25 years, but they have not been able to reach a solution that is backed by Parliament and the electorate. ‘The Future of Social Care: Turning Rhetoric into Reality’ aims to fix that dilemma for the new Health & Social Care Secretary.

The proposed model for state funding is based on analysis of the Dilnot Commission, but with a different funding mechanism. This is because the Commission’s proposals were too complex, had an inherent geographical bias and required constant review of the asset and cap limits. Moreover, their implementation would have rendered the business model of many care providers obsolete by reducing the number of self-funding private payers who are a necessary part of a sustainable model.

The mechanism proposed is called the Personal Asset Protection (PAP) guarantee: when an individual has spent a certain percentage of their assets, they qualify for local authority support in the ordinary way if they meet the eligibility criteria. The authority will pay for a person’s long-term care costs once the person has spent that defined percentage of their assets on care.

The modelling on this report is based on a person being eligible for state-funded care when they have spent 30% of their assets on their care. At this level, the total net cost to the British taxpayer would be an increase in spending of just over £2 billion per annum, and the rate could be flexed depending on the will of the Government and on political agreement.

The advantages of the PAP system are that it is easy to understand and mitigates some of the inequities inherent in the Dilnot Commission’s proposals. This £2 billion is the minimum extra funding required, and many commentators think that the figure of £7-8 billion is a more reasonable figure to re-establish the level of access to state-funded services compared with before the financial crisis of 2008, to ensure appropriate remuneration for care staff and embed sustainability in the system.

The former First Secretary of State and Minister for the Cabinet Office – who at the time had responsibility for the Government’s social care policy – now Chair of the All-Party Parliamentary Group on Adult Social Care and Deputy Chair of PPP, the Rt Hon Damian Green MP, said:

“This report comes after 15 months of lockdown, during which many people have been deprived of the community support that would normally be available to them. As restrictions are eased from tomorrow, carers in the community and in residential facilities will be expected to ratchet up their levels of care to help people return to their normal lives.

“The proposals put forward in this paper are aimed at setting up a care system that is resilient and adaptable, supported by a funding system based on fairness and equity. I hope my Right Honorable Friend, Sajid Javid MP, reads, considers, and accepts PPP’s recommendations in full as he writes both the white paper and the plan for social care that is due to be published by the end of this year.”

Notes to Editors

The report draws on existing literature and pilot programmes as well as two PPP roundtables and a symposium on international models of care funding, where representatives from Japan, Denmark and the Republic of Ireland presented alternative systems of social care.

Participants in the roundtables came from local authorities, care providers, community innovators, technology companies and, importantly, users with lived experience of caring. The 21 case studies in this report were also sourced from the roundtable participants.

The report was produced in partnership with Casson Consulting and Care England. It is sponsored by Anchor Hanover, Hammond Care and Nourish Care; however, PPP doesn’t advocate on behalf of any organisation.