Written Evidence Submitted by Marie Curie

(CLL0102)

 

 

Background and summary

 

  1. Marie Curie is the UK’s leading charity for people affected by terminal illness. We deliver palliative and end of life care directly to people across the UK both in their own homes and in our nine hospices and we run an information and support service which helped over 50,000 people last year. We are also the largest charitable funder of palliative and end of life care research in the UK and we campaign to improve access to and the quality of palliative and end of life care.
     
  2. The Covid-19 crisis has had significant impacts on Marie Curie and the patients we care for. We have had to innovate in how we provide services and restrict visitors to our hospices, while concerns over the virus have impacted on some patients’ willingness to engage with healthcare services; we have seen more families getting into crisis as a result. We have also observed significant numbers of excess deaths in private homes during the pandemic and are concerned that people dying at home may not be getting all the care they need.
     
  3. Many people who have lost somebody, either to Covid-19 or to another cause, over the last year will be grieving in isolation. Formal bereavement services are stretched at precisely the time people are being cut off from family and other informal support networks; this is likely to lead to an increase in the number of people dealing with complicated grief, which will have significant long-term impacts on their mental and emotional wellbeing.
     
  4. The vast majority of our fundraising ground to a halt in the early stages of the pandemic due to our reliance on retail and public events and activities. The impact on our income generation was significant and while cost-saving measures and additional funding provided by government have been welcome in stabilising the situation, these issues have highlighted concerns over the long-term sustainability of funding end of life care largely through charitable donations.
     
  5. At the beginning of the crisis, Marie Curie’s frontline services faced a critical shortage of PPE. Obtaining sufficient PPE through formal channels was initially challenging and, in some cases, we were forced to source equipment privately often at inflated prices. Resolving these issues was extremely time-consuming and took up resources that could otherwise have been spent on caring for our patients.
     
  6. Repeatedly throughout the pandemic, interventions from Government have been made targeting healthcare workers on the frontline which have initially applied only to NHS staff. At every turn we have had to fight to ensure Marie Curie and other providers like us are able to access PPE, get access to testing and benefit from other measures.
     
  7. There have been numerous important lessons learned from the Covid-19 pandemic in relation to palliative care, and several key recommendations:

Impact on Marie Curie services and patients

 

  1. Marie Curie supported interventions like lockdowns and social distancing to reduce transmission of Covid-19 both during the first wave and the second phase of the pandemic in the autumn. These measures led to challenges, however, both for how we deliver our services and raise the funding needed to keep them going, and for our patient population and their families.
     
  2. The Covid-19 crisis had significant effects on our hospice services. Several of our nine hospices have had cases of the Coronavirus during the first wave, and we were forced to close our Cardiff hospice for new admissions in April due to the number of cases there. In the early stages of the pandemic, the lack of an effective testing regime meant that Marie Curie was admitting patients who had suspected or confirmed cases of the virus.
     
  3. In line with Government guidance, we have introduced visiting restrictions in all our hospices. We are facilitating limited visiting during the last hours and days of life and have introduced virtual visiting. These innovations and others have been vital in maintaining patient support during the Covid-19 crisis.
     
  4. 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. This is very likely to be especially acute in the context of wider restrictions on attendance at funerals for family members over the past months.
     
  5. Covid-19 fears had a big impact on patients’ willingness to engage with health services. Marie Curie’s community nursing services delivered fewer planned visits during the initial lockdown and we saw rise in rapid response visits, as some patients were choosing to delay seeking care until they reached 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.
     
  6. Our hospices also saw fewer referrals, which may have been 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 in the spring. This means that many terminally ill people were not accessing the levels of care and support that they usually would or were having to access support in a different way.
     
  7. Since the beginning of the pandemic there have been nearly 30,000 excess deaths at home over the five-year average, according to the ONS[1]. While most people would prefer to die at home given the choice, dying at home relies on specialist care and support if people are to die with comfort and dignity and without pain. We are concerned that during the pandemic the increase in funding care providers in the community have received has not been sufficient to reflect the increased numbers dying at home, and that people may not be receiving the symptom control, pain relief and hands-on care they need.
     
  8. A recent survey by Marie Curie of bereaved people whose loved one died at home during the pandemic highlights these concerns – 7 in 10 said their loved one did not receive all the care and support they needed before they died, with more than a quarter (29%) saying they needed more support managing the dying person’s pain and nearly a third (31%) saying they struggled to arrange out of hours care. We have urged the Health Secretary to further investigate the quality of care dying people are receiving at home.

 

Service innovation

 

  1. As outlined above, we have had to introduce visiting restrictions and other measures to comply with lockdown and social distancing rules. This has necessitated significant service innovation; in particular the use of digital technology to maintain patient contact and enable family members to virtually visit their loved ones.
     
  2. Remote consultations have become essential to delivering palliative care with all hospice clinicians adapting to providing care remotely. While this was initially an unfamiliar experience for both patients and staff, remote consultations have proven effective in maintaining support for patients despite the restrictions imposed by the pandemic. Remote consultation has been particularly effective in increasing access to palliative care services for some patients and increasing patient choice over how they access care, as well as enabling more flexible carer support.
     
  3. While face-to-face consultations will likely remain preferable for establishing the therapeutic relationship and discussion of key issues like Advance Care Planning as well as bereavement support even after the pandemic, staff are open to the continued use of remote consultation for routine follow-up, emotional support and conversations on practical issues related to care.
     
  4. Similarly, several of our hospices have expanded their bereavement offers during Covid-19; for some this was through local commissioning partnerships and others through grant funding. All are working in close partnership with other palliative care and bereavement service providers in their localities to ensure a coordinated, system-wide responses, and these changes have meant that these hospices are now providing bereavement support for people within their catchment areas who may have missed out on support previously. Technology has supported the breaking down of geographical barriers, with one example being a hospice providing virtual support to a bereaved relative living in Switzerland.

 

Bereavement

 

  1. As outlined above, many people approaching the end of life, and their families, will have found it difficult to get the support they need over the last year and this feeling can compound feelings of loneliness and isolation. These feelings of isolation will be especially pronounced for people who have lost somebody – not just to Covid-19 – over the last few months and who are grieving in isolation.
     
  2. Marie Curie has 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.
     
  3. 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 first introduced and up to the week ending on 5 June, 403,457 deaths have been registered in England and Wales[2]. Marie Curie estimates that more than 2 million people in England and Wales have consequently been affected by a bereavement[3], the majority of whom will not have been able to grieve in the normal way because of social distancing restrictions.
     
  4. We are greatly concerned about the impact this will have on the nation’s mental health long after the immediate crisis has passed. Formal services are stretched at precisely the time people are being cut off from their informal support networks due to lockdowns and social distancing measures. We know that being unable to grieve appropriately risks leading to complicated grief reactions and can have significant emotional impacts on the people left behind.

 

Income generation and funding
 

  1. Lockdowns and social distancing rules had a devastating impact on our income generation. The vast majority of our fundraising ground to a halt in the early stages of the pandemic due to our reliance on retail and public events and activities. The situation was unprecedented, as we have never had so many of these activities effectively stop all at the same time.
     
  2. This occurred in March, the month of our annual Great Daffodil Appeal – one of the most high-profile fundraising events of our year; we estimate the impact of cancelling all GDA events from 17 March was a lost £1 million in income. More widely, we were forced to close all our charity shops (over 160 shops throughout the UK), which generated c£1.5m per month in the prior financial year.
     
  3. This significant drop in fundraising income necessitated a number of saving and efficiency measures including use of the Coronavirus Job Retention Scheme and taking measures to adjust other costs. While these measures and support from the government have stabilised our financial position, the financial impact from the pandemic is likely to have long-term impacts.
     
  4. Additional funding of £200m provided to the hospice sector by HM Treasury both in the summer and a further £125m via the Covid-19 Winter Plan has been greatly welcomed as a short-term measure to address the impact of the crisis on the sector, however the Covid-19 crisis has shone a light on a longstanding challenge to palliative and end of life care sector caused by its funding model.
  5. A funding model based on charitable donations is not sustainable in the long term 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.
     

Access to PPE

 

  1. 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.
     
  2. 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. 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.
     
  3. We made efforts to buy the equipment we needed 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.
     
  4. 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.
     
  5. 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, the initial lack of PPE and difficulties to access health and social care services meant many dying patients missed out on the essential care they need. It is vital that lessons are learned for the future and adequate PPE is made available to healthcare workers not just inside the NHS but in the independent sector.
     

Role of the third sector in providing end of life care
 

  1. As outlined above, it appears there was a lack of organisation around the delivery of PPE 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. Resolving these issues and ensuring that Marie Curie did not fall into the gaps between provision by the NHS and Local Resilience Forums and got the PPE we needed to protect our staff and patients, took significant time and attention.
     
  2. When testing capacity developed to the point that it was possible for NHS Test and Trace to provide regular asymptomatic testing for Covid-19 to healthcare workers, this was initially offered only to NHS staff. In all four nations of the UK, Marie Curie and other providers in the charitable and third sector had to engage with decision-makers in order to obtain access to regular testing for healthcare staff working in the hospice sector – this has only recently been offered to hospice staff in England as of the first week in December. As hospices and community services play a vital role in not only caring for a very vulnerable patient population, but also in supporting the NHS by allowing people who do not need to be in hospital to be cared for in the community, the benefits of safeguarding the sector through ensuring the regular testing of staff should have been better appreciated initially when allocating testing capacity.
     
  3. In combination these issues speak to a lack of appreciation of the role of non-NHS providers in the third sector in providing palliative and end of life care. Repeatedly throughout the pandemic, interventions from Government have been made targeting healthcare workers on the frontline which have initially applied only to NHS staff. At every turn we have had to fight to ensure Marie Curie and other providers like us are able to access PPE, get access to testing and benefit from other measures.
     
  4. While we clearly appreciate that the NHS is the largest provider of healthcare services in the UK, providers like Marie Curie have played a vital role on the frontline of this crisis, both in providing care to our patients and in supporting the NHS by helping to keep patients out of hospital. This must be better appreciated in future, and it must be ensured that providers in the third sector are included in the scope of interventions to support the health sector.

 

 

(December 2020)

[1] ONS data: Deaths registered weekly in England and Wales, provisional

[2] Ibid

[3] Research suggests that each death leaves an average of 5 people bereaved – see Shear, K et al (2005). Treatment of Complicated Grief: A randomised controlled trial