Written evidence submitted by National Voices (DEL0329)

 

Dear Rt Hon Jeremy Hunt MP, 

Thank you for inviting us to give evidence to your committee’s hearing on 16th June 2020. We were delighted to have the opportunity to share our insights with you, drawing on the experiences of our 60 health and care member charities. We particularly appreciated your giving the floor in both sessions first to a person with experience of service delay or cancellation to really bring to life the impact of the suspension of core NHS services on actual people living with long-term conditions. As you heard, that impact has been severe, and needs urgent attention as we enter the recovery and restart phase. 

With that in mind, we have developed five principles to guide health policies and service delivery over the coming months – a recovery centred on people and their needs. We are pleased to be able to share those with you now. We have also shared these principles with Government ministers in health and social care, work, employment, education, and more, as well as with the health agencies and various other organisations. The response has been overwhelmingly positive. For example, the Royal College of Physicians decided to sign up to these principles straight away, we are also responding to one large ICS and one AHSN about how these principles could inform their practice.

In addition, mindful of the time constraints during the oral hearing, which meant that not all of the issues and questions you had in mind could be covered, we set out and summarise our answers to the questions that your clerk, Previn Desai, kindly shared with us beforehand. They span cancer care, mental health services, maternity services, shielding, Government messaging, VCSE sector, leadership, and digital innovation.

Running through all of these areas, though, is an urgent need to actively engage service users, leave no-one behind, confront inequality head-on, recommit to person-centred care – not as a ‘nice to have’ add-on, but as central to safe and good quality healthcare – and value health, care and the VCSE support offer equally. 

We hope these summaries provide useful additional evidence as you and your colleagues continue your vitally important work to support and scrutinise the delivery of core NHS services.

 

Charlotte Augst

Chief Executive, National Voices

July 2020

Cancer services             

Cancellation of cancer services, and the impact on patients

An estimated 2.4 million people in the UK are waiting for cancer screening, further tests or cancer treatment, according to Cancer Research UK, of which 2.1 million are people left waiting for breast, bowel or cervical screening. During this time, 3,800 cancers would normally be diagnosed through screening. Urgent cancer referrals, often known as the two week wait, have been severely impacted - we estimate with up to 290,000 people missing out on further testing, which would normally catch up to 20,300 cancers in the same time period. 

In the wake of Covid-19 there will be a backlog of treatment to catch up on, with up to 12,750 fewer patients receiving surgery, 6,000 fewer for chemotherapy and 2,800 fewer receiving radiotherapy since lockdown began. Importantly individuals who may already be stressed and anxious about their health will have the additional worry about the impacts postponing testing or treatment could have. 

“Living with cancer is bad enough but complications in my oesophagus plus the corona virus pandemic have made things a lot more trying.... what alarmed me most was when the doctor told me that his hospital could possibly stop treating cancer patients needing chemotherapy because of the immune system breakdown it causes and covid 19. As a cancer patient who is still alive because of chemotherapy, that is a truly frightening thought. I only hope this doesn’t happen!”

A person living with cancer

Are certain groups more impacted? 

At every step of the cancer pathway, the most deprived populations suffer more. The lower a person’s income, the more likely they are to get, and die of, cancer. In fact, deprivation is linked to more than 15,000 extra cases of cancer, and more than 19,000 extra deaths, in England alone each year.  

The scale of disruption caused by Covid-19 is yet to be fully understood but it is likely this disruption has and will exacerbate these pre-existing inequalities. Where a person from a deprived area might experience later diagnosis already, this may be worsened by longer waits as a result of the backlog created by Covid-19.  

Are Cancer hubs the solution? 

It is too early to know whether Cancer hubs are working. These will be part of the solution to get treatment back on track but require adequate staffing, Covid testing and PPE to be effective. Especially so that people affected by cancer can be confident that they are safe from Covid-19. Additionally, more Cancer hubs are needed to be accessible to the people who need them, especially if there are challenges with travel or mobility. 

What needs to be done to get services back to delivering quickly? 

Covid-protected safe spaces will be a crucial part of addressing the growing backlog and ensuring more people can safely receive treatment or be diagnosed quickly. But this will only be possible if all cancer patients and healthcare staff – whether symptomatic or asymptomatic – are tested regularly for Covid-19. Cancer Research UK has estimated that to test patients ahead of hospital appointments and cancer staff weekly, between 21,000 and 37,000 Covid-19 tests must be done each day across the UK. A clear national plan for testing is needed to support the effective recovery and restoration of cancer services. 

This point will apply to all service recovery, across condition groups. Our ability to reliably, responsively and quickly conduct all necessary tests impacts substantially on our ability to get services started again. 

Mental health 

Have things got worse for mental health patients because of Covid-19?  

Much has been said about the wider mental health impacts of lockdown. But the impact of the pandemic has been particularly acute for existing users of mental health services. In a survey by Rethink Mental Illness of 1,434 people severely affected by mental illness over April and May, 79% of people said their mental health had gotten worse or much worse because of the pandemic. Sudden, sharp changes to routine and removal of coping mechanisms, like seeing friends and accessing peer support, has hit people hard. Though the nature of delivery of NHS services has changed for very good reasons, 42% said the decline in their mental health was because they were getting less support from mental health services.  

“I had been struggling with my mental health for the past year. Things had been deteriorating before lock-down, but I feel the isolation has definitely not helped. All contact with services is now by phone and I can’t see friends. The mundane routines of meetings and appointments that meant I had to keep functioning on some level are no longer there and it feels even harder to see life as worth living. I’m worried that when this isolation is over, I will have sunk to a place that I can’t get back from.” 

A person shielding with deteriorating mental health 

Has Covid-19 created ‘new’ mental health needs? 

It seems Covid has indeed generated significant additional mental ill-health, which needs sufficient support. NHS services need to be prepared for the additional mental health support needs of patients, families and carers. There is need for trauma-informed support and care for patients, families, and for NHS staff. Similarly, NHS staff who have witnessed a huge amount of distress will need to be supported. Those with long-term conditions have often been in ongoing acute pain with no access to support services (not even mental health ones). Those in care homes have not been able to see loved ones. Those caring for children with special educational needs have been under immense pressure.   

NHS Providers CEO Saffron Cordery has acknowledged that Trusts will face and increased demand for services and need support to meet it: Trusts need support now to navigate the next stage of the pandemic and meet the pressures their services will continue to face in the weeks and months ahead, given the predicted surge in demand for mental health care as lockdown eases.” 

What about digital and remote ways of delivering mental health services?  

Many recognised the reasons why services had changed and a small number had adapted well, but it is clear that the majority of services users are struggling with remote delivery. Face to face in mental health support is very important. Services users said it was easier to be dishonest about their health or not tell the whole truth, and that it meant the person treating them was unable to read their body language, which was an important cue.  

“All hospital appointments have been cancelled, meaning I have had just two telephone consultations with my psychiatrist and no contacts for my diabetes or liver disease. The stress and worry around this has been harrowing and crippling for much of the time. I feel so alone, with little support, and don't think hospital appointments will return to normal anytime soon. I am left with massive anxiety and am unsure that I will cope for much longer without treatment. Life is pretty unbearable!”

A person living with a number of physical and mental health problems 

The nature of the support many people receive has also changed. We heard of many examples of appointments being shorter in time, but also that the nature of support people received has changed, focusing more on welfare check ins rather than therapeutic assistance they have received previously. Others have been unable to get through to helplines when they have reached out.  

By definition, people who are the most digitally excluded were unable to participate in the online survey. Research is needed into the extent of digital exclusion among people severely affected by mental illness and their experience of remote delivery during the pandemic. It is vital that mental health is prioritised by Gov and NHS so services can respond to restrictions in the best way possible and return to face to face support as soon as it is safe to do so. 

Maternity services 

What are patient concerns about the delivering of maternity services?  

According to our member charity, Birthrights, pregnant and birthing women and people are concerned about restrictions on their birth choices, partners not being allowed to accompany them for antenatal care, scans, during inductions or in the postnatal ward, and those with particular needs not having these being met.  

Despite the cutting down of appointments, they have not seen a rise in adverse outcomes though there has been a rise in unassisted births.    

On birth choices, Birthrights explains that home birth, birth centres, and water births have all been limited. There has been a knee-jerk reaction from services to centralise where midwives are. Birth partners can often only attend in established labour, but questions remain about induction, video conference during scans, particularly if a woman has experienced a previous loss, and the need for additional support on the postnatal ward. 

What concerns do those supporting pregnant women have? 

Organisations like Birthrights, who support pregnant women, are concerned about whether women will have access to the full range of choices of place of birth options; access to the full range of pain relief (including birth pools and epidurals); and whether partners can support them at scans, in labour and postnatally. There are also worries about whether Trusts and NHSE&I are learning from what has happened during the crisis so far, in order to do things differently if a second wave hits. There is a question about when NHSE&I will be able to resume a focus on achieving the aims and outcomes of the Maternity Transformation Programme, which charities in the sector are keen to see happen as soon as possible. 

Shielding  

What are the key issues for affected people?  

National Voices has heard from many people who have been shielding through our online #OurCovidVoices platform, as well as through two focus groups we convened recently to better understand the broad concerns of those who have been shielding, and what pragmatic assistance would help them. They told us that they feel extremely anxious and abandoned. They reported ongoing problems with communication and guidance, which continues to confuse rather than clarify the situation for them.  

They also have specific concerns about work, money, the return to school, and access to food and medicines, especially after the shielding programme is paused from 1st August. There is a lack of employment protections for those who have been shielding, and the reliance on employers to do the right thing does not reassure those shielding that they will be sufficiently protected. That is why we, and many other charities supporting those with underlying conditions, have backed a TUC campaign to extend the furlough scheme to those who are extremely clinically vulnerable and cannot return to a safe work environment or get to work safely. https://petition.parliament.uk/petitions/330279 

“I feel really frightened about how it is being handled, frustrated at not getting replies to my questions all that has made me ill physically so I have to stop sometimes and take time out.” 

A person on immunosuppressants shielding with their husband  

“Whilst I appreciate how much everyone is stretched dealing with this crisis it seems strange not to have anything in place where people can ask questions and especially if the system isn’t working. It was only through my own network of friends and the disability community that I was able to get any advice at all to add to my own online research.” 

A person shielding 

“It is not effective to have schemes running that people don’t know about or which don’t co-ordinate with each other. In 2020 with the range of communications we have available this is not helpful and has caused me additional stress and worry. Consultation, coordination and two way conversations are needed now and in the foreseeable future.” 

A person shielding 

How can we safeguard the mental and physical health needs of those shielding?  

To improve the situation for those who have been shielding, we need to proactively engage with them, listen carefully to what they say, and respond to their expressed needs. In practical terms, this means: make every contact count, design services with the needs of the most vulnerable in mind, consider the benefits of approaches adopted in other countries, such as Spain, which set aside time for shielded people to exercise. A petition has been launched here in the UK by someone who has been shielding with Crohn’s Disease, Natasha Howard, asking for a similar ‘shielding hour’ here in the UK, as well as support bubbles for those shielding. If we personalise risk assessment and take into account social determinants and protected characteristics, we need to also then step up protection for those people who face the biggest disadvantage. 

“My partner and I both lost our jobs, as neither can be carried out in a Covid-Safe way. Now that shielding will be lifted; we won't have financial help or public support. We'll have the added anxiety of constantly having to explain our decisions to keeping safe to others about why we still won't be going out or socialising - it was easier with government backing, the explaining was already done.”

A person shielding with her partner 

What might be the long-term effects of shielding? 

Andy Bell from the Centre for Mental Health has described Covid-19 as a collective trauma, but points out that the impact of this trauma will be greatest for those most effected by the virus, the lockdown and the recession, as well as those with pre-existing mental health conditions or at the sharp end of inequality and discrimination. Those who have been shielding are a case in point. The impact on their mental health of long-term extreme self-isolation is likely to be immense – triggering or exacerbating anxiety and depression. If their legal rights are not bolstered, and they lose their jobs as a result, they are likely to then also experience a loss of income, possibly their homes, relationships or worse, in a spiral of decline.  

In health service terms, those who may have been fit for treatment pre-Covid may not be not sufficiently fit, or may not be able to self-isolate for 14 days pre-surgery without losing their jobs, so their physical and mental health may deteriorate further. The particular needs of the extremely clinically vulnerable need to be at the centre of policymakers’ minds as they restart services, so that everyone can access the care they need without risking their health or job.  

“Now I can’t see how I can go back to work in August as I work in a charity shop and I don’t believe it will be safe just yet. But I am confused by the new rules. Could they continue my furlough for a while? Will I have to resign? Will I be seen as a trouble maker? What if I get sick? How will I cope with the way other people are not respecting any rules? It has been so frustrating the way the government has talked about anything but us shielders. 2m rule, football, schools are all more important.”

A person shielding with MS

Value of the voluntary sector 

What role can the voluntary sector play to support NHS and social care to recover? 

The voluntary sector can play a valuable two-fold role in supporting NHS and social care to recover: It can support people directly by providing information and advice, as well as befriending and peer support; but it can also advocate on behalf of those people to decision makers, drawing on deep insight and understanding about where the real pressure points are, what people’s urgent needs are, and so on. At the same time, the voluntary sector is confronting a sudden and significant loss of funding.  

What is the financial impact on the voluntary sector?   

Health charities in particular are very dependent on community fundraising. Some very few charities in health earn significan commissioned income, but the vast majority are entirely dependent on the fundraising efforts of the communities they support. Covid-19 has had catastrophic impacts. According to research lead by NCVO, 30% of respondents expected a 25-40% reduction in income, 25% expect a drop of more than 40%, and 50% of respondents had furloughed staff. Crucially, then, there is an urgent need to increase funding to the health and social care voluntary sector so that charities can continue to provide a lifeline to those they support as well as communicating to decision makers the insight from those living within ongoing health and care needs.  

How accurate is messaging from the Government that the NHS is “open for business”?  

It is inaccurate and doesn’t reflect the reality of people’s experiences. It is really worrying that so many people are not using services and important to get messaging right. It might be tempting to go for a big communications campaign, but what we really need are locally agreed plans that every part of the system and pathway is sighted of and can operationalise, which then need to be communicated locally, ideally led by clinicians themselves.  

“I had a 6 monthly review of my diabetes scheduled at the start of lockdown. I knew that my doctors surgery was closed except for urgent appointments but as I hadn't been told that my appointment had been cancelled. I assumed that given the poor control of my diabetes that they still wanted to see me - I even got a text reminder to attend the morning of my appointment. As the door was locked, it rang the reception to ask to be let in, only to be told that my appointment has been cancelled. I received no apology from them for not informing me that my appointment had been cancelled.”

A person living with diabetes 

How do you rate NHSE’s leadership during the pandemic?  

It is important to recognise the enormity of the challenge. We know and work with a lot of very committed and hard-working colleagues in NHSE. A command and control approach might have been entirely appropriate for some aspects of this crisis. But now we need to rebuild services, we need to trust and support local leadership. It is also now urgent to go back to engaging properly with system partners and VCSE colleagues. 

Digital alternatives: what are the benefits and patient safety concerns?  

We will only understand what worked and what doesn’t by listening to people who use services. Increased flexibility and having more channels of communication open are clearly positive. But we also hear from patients who are confused as to how to contact primary care or who feel seriously put off by messages about ‘do not come in, do not call.’  

Crucially, we need to worry about whether Covid-19 is widening the digital divide, and of the impact of the sudden switch to online healthcare in exacerbating existing health inequalities. Some people are already excluded or find it difficult to access digital care due to financial constraints (expensive phone tarriffs, 25 million people, 1.9 million households no access to the internet, lack of a smart phone, choosing between food and mobile data) or language barriers or software that is insufficiently adapted to people’s learning difficulties or physical disabilities. Understandably, some people do not trust software companies or health authorities to keep their data secure or worry about who they might intentionally share it with. That might put them off using digital services. So alternatives need to remain for those who cannot use digital services.  

Together with Traverse, and Healthwatch, National Voices has run an insight project that looked into the experiences people now have of remote delivery models for the care they need. We are launching the report The Dr Will Zoom You Now this coming Friday, but here are the headline findings: 

  1. Quality personal communication matters – online, on the phone and face to face 
  1. Boundaries - respecting peoples' time and where the appointments fit in with their lives 
  1. Preparation and information – providing guidance and setting expectations 
  1. Choice of phone, video or text/email and face to face, to meet the needs of people – what is right for the person and what is right for the situation  
  1. Test, learn and improve – designing the experience with patients  
  1. Meeting the needs of people for whom remote is not possible or appropriate 
  1. Opportunities such as: interaction with patient notes, recording of appointments, education and training and the use of PPGs and other patient groups to provide local support networks to increase confidence and access.


Nothing about us without us: 

Five principles for the next phase of the Covid-19 response 

The Covid-19 crisis has been incredibly challenging for all of us. Leaders have had the unenviable task of having to make difficult decisions, with life and death consequences, in an unprecedented situation and with limited data. The stakes could not be higher. Meanwhile, all of us have had to live with the consequences of those decisions, including the loss of basic rights and freedoms. For more than 2 million people in the “extremely vulnerable” category, that has meant “shielding” through self-isolation within their households; many others considered “vulnerable” are self-isolating - seemingly indefinitely.

Until now, policymakers have been operating in crisis mode, as is necessary and understandable. But as the mists start to clear, and we shift from responding to an acute crisis into ongoing management, a transparent, accountable, and consensual approach is crucial. Nothing about us without us has never been more important, not least because, without it, trust is eroded, undermining long-term compliance with any new rules and recommendations, and in turn public health.

As a point of principle and accountability, decision makers must engage with those citizens most affected by both the virus and lockdown restrictions and understand how lives are lived by those who have ‘underlying conditions.’  We at National Voices, the leading coalition of health and care charities in England, have heard from hundreds of charities and people living with underlying conditions, and developed these five principles to underpin and test any policy change. They put people and their rights at the centre.

 

1. Actively engage with those most impacted by the change  

People have a right to be consulted about changes that profoundly affect their lives. People most affected by service cuts, lockdown, self-isolation, and difficulties with accessing food and medicine, need to be heard and their experiences and concerns acted on. Policymakers must base their decisions on a deep understanding of how people and patients are affected. Proper coproduction must be the cornerstone of policy design and development as we are making decisions for the longer term.  

2. Make everyone matter, leave no-one behind   

Everyone matters – all lives, all people, in all circumstances. Whether your life is normally unaffected by health issues or you struggle every day with your ill health or disability – your life matters equally and needs to be weighed up the same in any Government policy. It is essential that decision makers signal that they want people living with ill health or disability to lead full lives and remain an active part of society. Even if some people need to live with more severe restrictions, we must take steps to ensure they are able to work, earn money, access clinical care and socialise. We must move through this crisis together, and leave no one behind.

 

3.  Confront inequality head-on    

We’re all in the same storm, but we’re not all in the same boat. Mortality and morbidity are higher for those living in poverty and working on the frontline. People from Black, Asian or minority ethnic backgrounds are disproportionately affected. Life in lockdown is harder for those living in overcrowded or insecure housing than it is for those in spacious homes with outside space. There has never been a more urgent moment to confront the social determinants of ill-health as we build back better. All policies to manage the next phase must recognise these stark inequalities, taking a proportionate universalist approach. 

4. Recognise people, not categories, by strengthening personalised care     

We need a personalised approach to how people want to live. Vulnerability should not mean blanket bans. Having a learning disability does not in itself mean people will have a short life expectancy or poor quality of life, people in care homes are not simply waiting to die. Not everyone over 70 privileges safety over family contact. The category of ‘vulnerable’ needs to be rethought and broadened beyond narrow clinical criteria to include more holistic circumstances that can make people vulnerable, such as domestic violence, poverty, disability or overcrowding. Personalised care is essential to safety and dignity.

5. Value health, care and support equally      

People living with ill health or disability need more than medicine. They need care and support, connection and friendship.  Social care, charities and communities are part of this vital, life enhancing fabric of life. The siloing, underfunding and neglect of social care, its workforce, users and purpose as a life enhancing public service has to end. Charities and communities need to be enabled to take part in the design and delivery of future care models. Any policy efforts to rebuild services need to actively address and dismantle barriers between sectors that only ever mattered to funders and regulators.

 

The future will be different. Let’s make sure it will also be more compassionate and equal, with people’s rights at its centre. The many people who died, who lost loved ones or whose lives have been made immeasurably more difficult deserve nothing less.

 

Notes

National Voices is the leading coalition of health and social care charities in England. We work together to strengthen the voice of patients, service users, carers, their families and the voluntary organisations that work for them. We have more than 160 members covering a diverse range of health conditions and communities, connecting us with the experiences of millions of people.