Written evidence submitted by Age UK (ICS0023)

Age UK is the country's largest charity dedicated to helping everyone make the most of later life. The Age UK network comprises of around 150 local Age UKs reaching most of England. Each year we provide Information and Advice to around 5 million people through web based and written materials and individual enquiries by telephone, letters, emails and face to face sessions. We work closely with Age Cymru, Age NI and Age Scotland. Local Age UKs are active in supporting and advising older people and their families in the care market.

Introduction

Age UK routinely gathers insight and data on the experiences of older people, many of whom have regular contact with NHS services and have care needs (which may or may not be met), are cared for informally by family, friends or neighbours or draw on paid care services. In responding to this call for evidence we have drawn upon some of the findings of the most recent, unpublished wave of research and the responses from our surveys. [1]

Our population is ageing and over the next 25 years it is predicted that there will be 2.6 million older people aged over 85 living in England[2]. Two-thirds of people aged 65-69 have one or more long term condition, and a further 13% struggle with at least one ADL (activities of daily living). The prevalence of both multiple conditions rising with age and ADL limitations rises significantly with age. By the age of 85 more than two fifths of people report ADL limitations and around nine in 10 live with one or more long term condition[3].

People living with long term conditions account for 50% of all GP appointments, 70% of bed days and 70% of the total health care spend in England. Poor management, and difficulties accessing appropriate social care support in the home also increases demands on urgent and acute care, with people living with four or more conditions 14 times as likely to have unplanned, preventable admissions.

Supporting people living with long term conditions and/or frailty to the end of their life already represents the most significant responsibility of the NHS and social care system, and the new integrated care systems will need to plan services carefully to meet this growing need in the context of workforce and funding pressures.

How best can a balance be struck between allowing ICSs the flexibility and autonomy they need to achieve their statutory duties, and holding them to account for doing so?

As we age and develop long term conditions, we become increasingly reliant on health and care services, but the impact of ill health is unevenly distributed. Across all age groups, 28% of people living in the most disadvantaged areas have four or more long term conditions, compared to 16% in the most advantaged. People living in the most deprived areas will need to manage ill health for a longer period in their lives, developing multiple long term conditions an average of 10-15 years earlier in the most deprived areas2. Allowing flexibility for integrated care systems, places and neighbourhoods to develop an offering that is best able to respond to those differing levels of need is important.

Health and care should be designed with an understanding of what outcomes are important to the individual service user, measuring success through monitoring a person’s ability to manage their health and care needs, to live well and, towards the end of life, to experience a good death in a place of their choosing.

Clarity around expected outcomes is important. Systems should therefore have the freedom to focus on achieving positive, person-centred outcomes, optimising the health and wellbeing of individuals. How they achieve that goal will vary depending upon the needs of the population but sharing of good practice within and between systems will help all areas to improve.

However some trends, and therefore service requirements, are universal. Every ICS will see an increase in the numbers of people ageing with more complex health and care needs over the next decade[4]. Individuals and communities in areas of greater disadvantage may age more quickly, but they age nonetheless. As a result managing frailty, multiple conditions and cognitive decline will need to be priorities for all integrated care systems, and we were pleased to see the belated addition of palliative care services to the statutory guidance for ICBs[5].

Similarly, there are some population-level health interventions that will benefit populations wherever they are. There are a number of population-wide interventions to promote wellbeing or prevent disease or ill-health, that can be particularly effective for older people. For example, promotion and provision of interventions that support and encourage appropriate and inclusive physically activity can improve health and resilience at a population level, as well as preventing falls amongst older people.[6] NHS health checks and screening act as effective detection of health conditions, as well as opportunities to have conversations with patients about developing and maintaining a healthy lifestyle for healthy ageing.

The CQC will have an important role in holding both integrated care systems and local authorities to account. The new framework should improve consistency, and we’ve been encouraged by the CQCs engagement with the voluntary sector as they have been developing their new processes. The CQC can also perform a role in identifying data gaps so that these can be closed and systems can plan based on evidenced need. While assessment is important, the ICS oversight and local authority assurance should not overlap, duplicate or become burdensome to the extent of pulling precious resource away from the frontline.

Are central targets consistent with local autonomy in this context?

While we acknowledge that these are frequently missed in the context of current pressures, central targets are important in some areas. Nationally agreed targets are important for tackling known under provision – for example just 5.6% of IAPT referrals in 2020-21 were for over 65s, despite the target set in 2011 being 12%.[7]

National waiting time standards should also be preserved[8] , and tools to manage patient expectations around wait times such as the ‘My planned care’ portal[9] should be regularly updated for accuracy, with clear alternative routes to accessing information being made available for the digitally excluded and for those for whom English is not their first language. Locally produced materials may work best to bridge the gap, and ICSs should draw on the lessons learnt during the pandemic, working with VCSE partners, HealthWatch and housing providers to produce tailored messages and information for harder to reach communities.

There is also an important role for national programmes and leadership in addressing emerging challenges and driving improvement and innovation in areas of underperformance. We would certainly hope to see the objectives of the NHS Long Term Plan (LTP) in respect of driving a step change in ageing well services and universal personalised care[10] retained in the forthcoming LTP refresh process and firmly embedded into the plans of ICSs.

Improvements in data collection are also needed, otherwise progress against any target, whether centrally or locally set, will be difficult to measure. Good data for the social care sector is certainly thin on the ground and there are considerable gaps in the data that is collected around older people’s mental health. For example, the lack of data on older people’s use of NHS eating disorder services has hidden a need that clinicians on the ground know exists. It is difficult to plan services when no data on need and provision is collected.

To what extent is there a risk that ICBs become an additional layer of bureaucracy if central targets are not reduced as ICBs are set up?

As long as targets are focused on outcomes, and local flexibility is encouraged, this should not be a problem. The test will be whether money really flows from integrated care boards to places to deliver community-based, preventative services to meet the needs of local populations. CCGs and local authorities have been working with a pooled budget to deliver localised initiatives through the Better Care Fund[11] it is hoped that, where evidence shows positive progress for populations and individuals, this work will continue. Integrated Care Boards, Integrated Care partnerships and place-based boards should work in partnership to ensure effective monitoring against national standards and local targets.

Differing political priorities between local authority leaders within ICS footprints could create more complexity, and board members who are chiefly remunerated for their role at place (for example LA CEOs or NHS trust leaders) may at times find themselves conflicted. CQC quality assurance processes will need to be effective at monitoring the quality of leadership.

What can be learned from examples of good practice in established ICSs?

There are a number of good examples of good strategic partnership working developing between ICSs and the VCSE helping to ensure that: systems benefit from the insight and expertise of the sector; there is a clear route to enable organisations to advocate on behalf of their populations and communities; and engage in delivery challenges. In many cases where partnership is working well, systems have invested time and resources into VCSE forums and platforms that enable the sector to come together and take on a strategic leadership role. ‘Third Sector Together’[12] in Northwest London is one such example.  

Additionally there are many examples of good practice engaging the VCSE in the design, development and delivery of key services. For example, Age UK Bradford’s work with their integrated care system to develop personal support navigator roles is one such example, focusing co-producing plans that matter to the individual who would be drawing on those services. We hope that this type of good practice and innovation will transfer to the new, larger structures without the sort of operational or contractual disruption or delay that too often sees services lost.

How can it be ensured that quality and safety are at the heart of ICB priorities?

Over the last two years the deterioration of older people living with multiple long term conditions, and of those who care for them, has been significant. Long waits for assessments, electives and diagnosis has meant that the complexity of cases is increasing. According to the BMA’s analysis of NHS England Consultant-led Referral to Treatment Waiting Times statistics, figures for May 2022 show: a record number of over 6.6 million people waiting for treatment; 2.41 million patients waiting over 18 weeks for treatment; 331,623 patients waiting over one year for treatment - 13 times the number waiting over a year in May 2020; a median waiting time for treatment of 12.7 weeks – significantly higher than pre-Covid duration. In addition to this, there is a hidden backlog that consists of patients who require care but have either not yet presented, or who have had referrals cancelled due to the impact of Covid-19 on the NHS; patients who, in normal times, would have been referred for treatment, received elective care and attended outpatient appointments, but who for a number of reasons relating to the pandemic have not yet found their way into the health system.[13] ADASS recently reported that Directors of Adult Services are having to prioritise assessments for adult social care because of a severe shortage of capacity and unprecedented demand. Furthermore when need is identified, it cannot always be met. There is a very real risk that quality and safety are already being compromised in many areas.

Maintaining quality and safety is going to be an ongoing challenge in such an overburdened system. Services should be commissioned with a focus on high standards and rights[14] of both service users and staff[15], and there need to be effective pathways for service users, carers and staff (as well as advocacy organisations representing their interests) alike to raise concerns and complaints about when treatment and care falls below the standards they should expect. As services and systems work towards greater degrees of strategic and operational integration, it will be critical to ensure that problems in care do not become ‘no one’s responsibility’ from the perspective of service users and their families and carers.  

More broadly, the development of ICSs provides a renewed opportunity for benchmarking outcomes and sharing of best practice across and between ICS areas. There is variation in the population density of older people, within ICS geographic footprints.[16] Similarly, there has been variation in the provision and quality of services for older people in different geographic areas.[17] The development of ICSs provides an opportunity to provide a more comprehensive service offer to those areas previously less well served, in order to provide equitable access to health and care services across the ICS geographical footprint.

How can a focus on prevention within ICSs be ensured and maintained alongside wider pressures, such as workforce challenges and the electives backlog?

Current pressures and the electives backlog will not be addressed without upstream prevention, but the need for central Government to make more money available to systems, local authorities and providers to both carry out prevention work and tackle recruitment and retention issues in the workforce is inescapable. 

We support the recent recommendations of the Health & Social Care Committee on workforce[18]. Public health funding constraints are also a problem at systems and place level.[19] Maintaining health protection capacity, (and restoring it where it has been lost) is important too, if resources are to be safeguarded from unmanageable future pressures in primary, acute and social care due to new outbreaks of covid, flu, or future pandemics. Older people living with multiple long-term conditions have lower resilience to disease and, as we have seen over the last two years, are more likely to require hospitalisation if they do become sick.

The elective care backlog is just the tip of the iceberg, and long waiting times at A&E are a symptom of a system that has reached breaking point. There are now high levels of unmet need manifesting across primary and community care, in social care and mental health. With insufficient social care capacity to support older people in the community post-discharge, they remain patients in hospital for longer than clinically necessary. This challenges not only the health and care system, with beds not available for new patients, but also damages the older person’s health and recovery.

Recent Age UK research has found that[20] :

• 1 in 4 older people report they have lost mobility and 1 in 5 say they are less steady on their feet.
• 1 in 4 older people report being in more pain.
• 1 in 5 say they find it harder to remember things than they used to.
• Around a quarter of older people reported feeling more anxious, difficulty in sleeping and low motivation.

Anticipatory care is a vitally important element of prevention, helping people living with frailty and/or multiple long term or complex conditions to stay as well and independent as possible for as long as possible. We believe that Long Term Plan commitments around the delivery of anticipatory care[21] must be preserved in the refresh and embedded in ICS plans. Supporting older people with medical and social care at home not only has better health and quality of life outcomes for the individual, but also prevents avoidable hospital admissions and all the potential knock-on effects on the health and care system.

Overwhelmingly older people told us that they wanted improved access to GP and community-based services, to help manage their conditions; better holistic support in the community; and for those who are caring, much more help for services to manage their responsibilities. Collectively reducing the risk of unplanned, urgent or chaotic care by spotting and responding quickly to changes in an individual’s condition or circumstances, and putting plans in place to manage, for example, a flare up of their condition or if their carer should become unwell, should be priorities for all integrated care systems.

At population level, Anticipatory Care plays an important role in reducing health inequalities, as those who are least advantaged are more likely to (1) experience frailty and/or multiple long term conditions at an earlier stage in their life and live with them for longer; (2) experience the most significant barriers in accessing the right professional care; and (3) may be in greatest need of wider forms of support to maximise their health, wellbeing and independence.

Aug 2022