MARIE CURIE – WRITTEN EVIDENCE (PSR0092)

The House of Lords Select Committee on Public Services: lessons from coronavirus

ABOUT MARIE CURIE

Marie Curie is the UK’s leading end of life charity. We deliver palliative and end of life care directly to people across the UK, both in their own homes and in nine hospices. We run an information and support service, and we are the largest charitable funder of palliative and end of life care research in the UK, as well as a leading voice calling for improved access to and quality of palliative and end of life care for all people affected by dying, death and bereavement.

SUMMARY

•  Marie Curie staff are on the frontline in the fight against Coronavirus – providing care for hundreds of dying patients every day, some who are Covid-19 positive, in their own homes and in our hospices. We are providing vital support to the NHS by keeping these patients out of hospital and reducing pressure on acute and critical care capacity.

•  Covid-19 has had an impact on some patients’ willingness to engage with health services, with some patients delaying seeking care until they reach a crisis due to concerns about the virus; we are seeing a greater proportion of rapid response visits as a result.

•  At the beginning of the crisis, Marie Curie’s services faced a critical shortage of Personal Protective Equipment (PPE) despite following the correct access processes, numerous pleas for help and efforts to identify alternative sources. These issues had a direct impact on patient care – with some visits to dying patients having to be cancelled because we did not have the PPE to deliver care safely.

•  We have made significant changes to the way hospice services are delivered to ensure compliance with guidance on social distancing and restrictions on movement. Working in partnership with the NHS and other providers across the UK, we have also significantly adapted and innovated our services to serve the Covid-19 needs and wider end of life needs in each jurisdiction.

•  We have also innovated several of our services with digital technology during lockdown and expanded the range of services available via our Information & Support service, to ensure dying people and their families and friends receive accurate information and support at these challenging times.

•  The Covid-19 pandemic has had a devastating impact on our income generation and exposed that palliative care funding models based on charitable donations face significant challenges and might not be sustainable in the long term. Palliative care should be better integrated into local systems to ensure vital services can provide continuous care to patients and their families despite crises and loss of charitable income.

GENERAL

What have been the main areas of public service success and failure during the Covid-19 outbreak?

The two principal public service failures for people at the end of their lives during the Covid-19 outbreak have been access to health and social care services and the delivery of Personal Protective Equipment (PPE) for healthcare staff. Palliative care and support to people dying with Covid-19 or other illnesses have been limited due to numerous services being put on hold, lack of PPE for staff, fear of accessing services due to the pandemic and regulations on isolation and visiting restrictions.

Providing high-quality palliative care to dying patients is crucial, especially at these times as data shows the number of people dying in the UK is reaching record levels – registered deaths in England and Wales in the week ending 5 June 2020 were 10,709, 7.3% (732 deaths) higher than the five-year average[1] for the same period. Data shows that most excess deaths are occurring in older populations, with three quarters of all deaths in England & Wales[2] and Scotland[3] from Covid-19 being people aged 75 and over. Under normal circumstances, research shows that around 75% of people who die could benefit from a palliative care approach[4].

Covid-19 fears are having a big impact on patients’ willingness to engage with health services. Marie Curie’s community nursing services are delivering fewer planned visits and we are conversely seeing a rise in rapid response visits, as some patients are choosing to delay seeking care until they reach a crisis due to fears about the virus. In the early stages of the pandemic many patients expressed concern about having healthcare staff coming into their homes, although this has now been addressed and most patients are engaging with virtual support. Our hospices are also seeing fewer referrals, which may be caused by patient unwillingness to be admitted to an inpatient unit and be cut off from their loved ones due to social distancing and visiting restrictions. In our Marie Curie Hospice Glasgow, for example, occupancy was 40% of its usual levels. This means that many terminally ill people are not accessing the levels of care and support that they usually would, or are having to access support in a different way.

We have observed that some patients and families may be trying to manage without engaging with health and social care services, and some families are coming into our services only once they have reached crisis point. The drop in the number of people attending Emergency Departments since the onset of the pandemic is important in this context. The number of A&E attendances in May 2020 was 41.9% less than the same month last year[5]. We know that terminally ill people may experience frequent visits to Emergency Departments in the last 12 months of life[6].

Social care is an integral part of the palliative and end of life care terminally ill people receive to help them live as well as possible right up until their death. Long-standing, fundamental issues in social care across the devolved nations including lack of sustained financial support, workforce challenges and compromised systems have been laid bare as a result of this pandemic. As a result, this has significantly impacted on the care terminally people receive. We believe this crisis has emphasised that central and devolved Governments must urgently review and reform current systems to become more integrated and proactive.

In Scotland, this has been supported by The Scottish Advisory Group on Economic Recovery which published a report and recommendations for the coming months, including the future of the care sector. The report recommended that the Scottish Government should accelerate work on social care reforms and urgently review structure, funding and regulation of the care sector to ensure sustainability and quality going forward. It also referenced workforce issues, and the need to recognise and support the contribution of unpaid carers.[7]

In addition to the above, at the beginning of the crisis, Marie Curie’s frontline services faced a critical shortage of PPE. Marie Curie staff are directly providing care for patients with Covid-19 and also continuing to support hundreds of terminally ill people in their own home and in our hospices. The shortage of PPE in the early stages of the pandemic had a direct impact on patient care Marie Curie was able to provide. Several Nursing Service appointments in patients’ homes had to be cancelled because of the lack of PPE.

We placed large orders of PPE through different channels, such as the NHS supply chain, the National Supplies Distribution Resource Team (NSDR) and Local Resilience Forums (LRFs) but deliveries were delayed, some cancelled, sent in very small amounts or out of stock. It appears there was a total lack of organisation in the early stages of the pandemic and, consequently, confusion in both central and local Government about who should be supplying PPE to non-NHS frontline services. For the PPE we did receive through these channels, Marie Curie had to rely heavily on its internal structures to support direct provision to our frontline staff; an unnecessary diversion of resources which were already under intense pressure.

We made efforts to buy the equipment we need from alternative sources, but this had mixed results. Some suppliers were profiteering – charging substantially more for items such as face masks – but faced with such an enormous shortage we had little choice but to buy at inflated prices.

The challenges obtaining PPE were also extremely time-consuming, taking staff away from other important work, and despite shortages and administrative confusion easing in recent months it continues to be time-consuming to access PPE. This has influenced teams' ability to plan care provisions for patients, as staff did not know if they could accept patients because they were not sure what PPE they would be receiving.

While issues obtaining standard PPE have now been resolved and we are no longer experiencing significant shortages of face masks, visors or other standard PPE, our services in some areas are still facing challenges obtaining specialist PPE to allow us to visit patients who require aerosol-generating procedures.

Due to the lack of PPE and difficulties to access health and social care services, many dying patients missed out on the essential care they need. In some cases, this may have meant patients dying alone, without proper pain or symptom management, with obvious implications for them and a potentially long-term scarring effect on their loved ones – a situation that is totally unacceptable.

RESOURCE, EFFICIENCY AND WORKFORCE

Did resource problems or capacity issues limit the ability of public services to respond to the crisis? Are there lessons to be learnt from the pandemic on how resources can be better allocated and public service resilience improved?

Did workforce pressures preceding the crisis, such as difficulties in the recruitment or retention of workers, limit the ability of public services to meet people’s needs during the lockdown? How effectively, if at all, have these issues been addressed during the Covid-19 outbreak? Do public services require a new approach to staff wellbeing?

Why have some public services been able to achieve goals within a much shorter timeframe than typically would have been expected before the Covid-19 outbreak – for example, the increase in NHS capacity? What lessons can be learnt?

A good example of public service efficiency during the pandemic is Fast Track NHS Continuing Healthcare (CHC). Fast-track CHC has been delivered to dying patients in a much shorter timeframe than before the Covid-19 outbreak.

Over the last three years, Marie Curie has been highlighting the excessive waits that dying patients face when trying to be discharged from hospital into their own home or a care home via fast-track CHC. CHC guidance states the care packages should be put in place within 48 hours. Prior to the Covid-19 crisis only 22% of CCGs in England were able to meet this deadline[8]. 

We will not be able to assess CHC data from the crisis period for some time, however, in the areas where we are involved in the delivery of fast-track CHC we have seen significant reductions in delays to putting care in place. In one area the average waiting time between referral and a care package being put in place has dropped from 1 week to an estimated 3 hours.

Part of the reason for this change has been that we have taken a more assertive attitude to delivering care. When a District Nurse has called us to let us know a patient needs care, we have moved to put that in place immediately rather than waiting for the referral go through the usual bureaucratic layers before reaching us. Moreover, additional Covid-19 funding made available has also eased the approval process that CHC applications need to go through. In Scotland, a new Rapid Response service has also been established through our Edinburgh Hospice, which allows urgent home assessment and intervention to support unstable patients on the same day as referral.

These are positive changes that have had a huge impact on the quality of life for patients. However, we are concerned that these positive changes will revert to business as usual once the crisis is over and terminally ill people will once again face long delays getting out of hospital or receiving urgent home assessments that cause real grief for people and their families, especially when someone dies while they are waiting for care to be put in place.

While additional funding has helped much of this change to happen, a greater sense of urgency to do what is necessary to get care to patients quickly has been central. What this seems to suggest is that there are layers of pre-crisis bureaucracy and process in the NHS and social care that are detrimental to our key mission of getting the right care to people at the right time.

It should also be noted that improvements have not been universal and some issues remained for hospices. Non-acute trusts were not included in the initial changes and some areas were unable to commission care to facilitate discharges from hospital into hospice settings.

TECHNOLOGY, DATA AND INNOVATION

Has the delivery of public services changed as a result of coronavirus? For example, have any services adopted new methods of meeting people’s needs in response to the outbreak? What lessons can be learnt from innovation during coronavirus?

At Marie Curie, we have adopted new methods to meet people’s needs in response to the outbreak, such as new ways for dying patients to talk to their loved ones despite visiting restrictions and encourage people to express and document in advance their preferences about how they wish to be cared for as their illness progresses. We have also put in place virtual consultations with medical staff, nursing staff and AHPs instead of outpatient consultations.

In line with Government guidance, we have introduced visiting restrictions in all our hospices.  We have tried to be as flexible as we can be with these restrictions, reviewing our decisions frequently as we move through the pandemic and aligning to the different decisions made by trusts in local areas. While we believe these visiting restrictions are the appropriate course of action, our patients naturally want to spend as much time as possible with their loved ones as they approach the end of their lives. Reducing this contact can be incredibly distressing and will often compound the grief and emotional impact on bereaved loved ones after the person dies.

In order to continue to provide the best possible emotional support for hospice patients and their loved ones, Marie Curie has quickly put in place virtual visits. The technology has been introduced within a week in our hospices and requires minimum training for hospice staff so that virtual meetings could be arranged quickly and simply. Dying patients are therefore able to virtually see and speak with their loved ones at this critical time.

A virtual ward was established at our Marie Curie Hospice Glasgow which enabled support for up to five patients with more complex needs being cared for at home. This worked well and included daily input from medical and community clinical nursing teams, Marie Curie Fast Track Service and District Nurses to ensure patients and their families received the support they needed.  This innovation will help explore and inform future models of care.

Our specialist doctors at the Marie Curie Hospice Edinburgh were able to prescribe anticipatory medicines to patients at home for the first time, also enabling medication to be stored in the hospice which could be used by the hospice medical staff for these patients receiving end of life care at home.

A Community Hub was also created through our Glasgow Hospice service, which has further expanded external relationships with primary care. Virtual daily briefings were held from our hospice with Marie Curie Fast Track, Glasgow Royal Infirmary HPCT, District Nursing and Care Home liaison staff. The collaborative approach was highly successful and ensured person-centred care continued to lead decision making. As a result of the positive impact of the Community Hub on patients, their families and staff, it will become a permanent feature of our Glasgow Hospice services as new levels of normality start to emerge.

Due to the new circumstances brought by Covid-19 and the increase in number of dying patients in our hospices and in the community, we have also encouraged people, including Covid-19 patients, to plan ahead and decide on their advance care planning (ACP). ACP is a way for someone to express and document their preferences about how they wish to be cared for as their illness progresses. It includes key issues about where they want to be looked after and what treatments they want and don’t want.

ACP is critical to ensure the wishes and care preferences of people, whether they are terminally ill or not, are respected. The ACP also releases pressure on the patient and his family and friends who may not otherwise be aware of the wishes and preferences of the person.

Did public services have the digital skills and technology necessary to respond to the crisis? Can you provide examples of services that were able to innovate with digital technology during lockdown? How can these changes be integrated in the future?

We have innovated several of our services with digital technology during lockdown to ensure dying people and their families and friends receive accurate information and support at these challenging times.

Since the lockdown, the Marie Curie Support Line has been extended and is open seven days a week, to give people trusted information on everything from staying safe and well in isolation, to planning ahead and emotional and bereavement support. Our staff have been responding to numerous queries about coronavirus, especially about visiting and supporting people who are vulnerable. Calls requesting information and guidance about travelling to visit a loved one remain the highest coronavirus-specific enquiry to the Support Line as of June 2020, while calls from people seeking emotional support and advice on funeral arrangements have also increased.

The need for these online services is increasing during the pandemic due to social distancing and government advice to stay home, as it is reflected by the number of calls we receive - we saw a 30% increase of calls to our support line between April and mid-May.

Many people approaching the end of life, and their families, will be finding it difficult to get the support they need right now and this feeling can compound feelings of loneliness and isolation. We have therefore launched a check-in and chat service, where people can be befriended by one of our volunteers. Check-in and Chat matches callers with a Marie Curie volunteer, who can give ongoing support and be a friendly ear for people when they just need to talk.

In addition to this, Marie Curie has also launched a new bereavement service​, to support people when they need it the most. People affected by the death of a loved one can now access up to six sessions of telephone support to help them explore their grief, which can feel even more isolating with current social distancing measures.

These new services are important as there will be a surge in need for high quality bereavement services as we progress through the Covid-19 crisis. Since lockdown measures were introduced and up to the week ending on 5 June, 168,396 deaths occurred in England and Wales[9]. Marie Curie estimates that over 840,000 people in England and Wales have been affected by a bereavement[10], the majority of whom will not have been able to grief in the normal way because of social distancing restrictions.

INTEGRATION OF SERVICES

Were some local areas, where services were well integrated before the crisis, better able to respond to the outbreak than areas where integration was less developed? Can you provide examples?

Are there any examples of services collaborating in new and effective ways as a result of Covid-19? Are there lessons to be learnt for central Government and national regulators in supporting the integration of services?

Marie Curie has been working collaboratively with other service providers throughout the Covid-19 crisis. We supported the NHS in preparing the London Nightingale hospital in the first weeks of the pandemic and Marie Curie nursing staff were assigned to Nightingale to provide end of life care should it have been needed.

In Liverpool, we have worked with other providers to establish a ‘Pan-Liverpool’ consultant on call rota to cover palliative care services in specialist inpatient units, hospitals and the community across the city. This ensured that the service was sustainable in the face of possible sick leave due to Covid-19. This has allowed the redeployment of resources or staff to support areas which were struggling due to shortages or sickness. It has allowed a disparate group of professionals to view themselves as a single team and has reduced bureaucracy and duplication.

Similarly, the Hospices of Birmingham and Solihull (HoBS) project has brought hospices in the area together to develop a responsive call centre manned by specialist end of life Clinical Nurse Specialists and specialist allied health professionals, supported by a 24/7 Palliative Consultant and pharmacy on call rota. Staff changed working hours, working patterns and roles to ensure that the local community would have access to good quality EOLC in the wake of a Covid-19 pandemic, as well as a single point of contact for immediate advice and support for those with palliative and end of life care needs, whether from Covid-19 or any other cause.

We have set up a formal link with the bereavement charity Cruse Scotland for provision of information services in Scotland, and have worked with Carers UK to provide information and support around employment rights and shielding of carers at the end of life. We have also proactively contacted care homes to offer our information and support services and are beginning to see an increase in demand for these services from care homes.

THE RELATIONSHIP BETWEEN CENTRAL GOVERNMENT AND LOCAL GOVERNMENT, AND NATIONAL AND LOCAL SERVICES

How effectively were public services coordinated across the borders of the devolved administrations? Did people living close to the border experience difficulties in accessing services?

Can you provide any examples of how public services worked effectively with a local community to meet the unique needs of the people in the area (i.e. taking a “place-based approach” to delivering services) during the Covid-19 outbreak?

Would local communities benefit from public services focusing on prevention, as opposed to prioritising harm mitigation? Were some local areas able to reduce harm during coronavirus by having prevention-focused public health strategies in place, for example on obesity, substance abuse or mental health?

We have not been made aware of any significant issues for patients living close to borders with the devolved administrations in Wales or Scotland.

In terms of place-based initiatives, in Birmingham the Birmingham and Solihull CCG commissioned grief and bereavement counselling providers in Birmingham and Solihull to develop a single point of access for bereavement support for any resident (both adults and children) living in the area.

Birmingham CRUSE were commissioned to be the central point of access for all enquiries and once triaged would either be offer level 1 advice and signposting, or refer onto a partner to provide more specialist support. Marie Curie Hospice West Midlands has been commissioned to deliver the counselling support for children and young people in Solihull. While the project has only been running for three weeks, it has already enabled us to build stronger working relationships between the different organisations and assist to manage capacity and demand for the region as a whole group, reducing waiting times. Relationships have been built with education providers and joint training packages are being developed to ensure equity of training delivery at schools across the region.

ROLE OF THE PRIVATE SECTOR, CHARITIES, VOLUNTEERS AND COMMUNITY GROUPS

What lessons might be learnt about the role of charities, volunteers and the community sector from the crisis? Can you provide examples of public services collaborating in new ways with the voluntary sector during lockdown? How could the sectors be better integrated into local systems going forward?

While coronavirus introduces an element of uncertainty to future health projections, we still expect the number of people living and dying with chronic and terminal illnesses to continue to grow in the years ahead, so it has never been more important that the palliative care sector is given the support it needs to continue providing high-quality services.

Marie Curie provides essential palliative care services and support to people at the end of their lives across the UK. Last year, we cared for more than 40,000 people in their own home and in our nine hospices. We also helped more than 50,000 people through our Information & Support service and Marie Curie Helper volunteers.

Nonetheless, palliative care funding models face challenges and might not be sustainable in the long term. Marie Curie is funded through a mixture of statutory commissioning and charitable donations. This public giving is critical, providing up to 50% of the funding needed to deliver our community nursing services and 65% of our hospice funding. Our Information & Support service, Research and Policy and Public Affairs activities receive no statutory funding and are 100% reliant on voluntary income. In total, nearly three quarters of our income comes from the generosity of the public.

The Covid-19 crisis has had a devastating impact on our income-generation, with the vast majority of our fundraising activities ground to a halt due to our reliance on retail and public events and activities. As the Covid-19 crisis has shown, the funding model based on charitable donations is not sustainable and has a direct impact on the quality of care and support people receive at the end of their lives.

We are committed to our NHS partners and the dying patients who rely on us. But the stark reality is that these services cannot survive without financial support. We believe that the care we receive at the end of our lives should be as critical as the care we receive at the early stage of our lives. Palliative care should therefore be better integrated into local systems to ensure vital services can provide continuous care to patients and their families despite crisis and loss of charitable income.

7 July 2020